My Breast Cancer Story

I was diagnosed with breast cancer in 2011. It was found by accident on a chest x-ray, and I was shocked. There was no history of breast cancer in my family, and I never thought it could happen to me.

Cancer patients are supposed to be upbeat; we are supposed to relax and trust that our doctors will provide the best possible care. I had never had a serious illness before, so I was naïve about what to expect from the medical establishment. I wanted to feel that I was safe and in good hands, and that I could simply follow my doctors’ advice. Unfortunately, that was not my experience.

Our physicians are usually our primary source of information, but the fact is that medicine in the USA is a business. Physicians are paid for their time, so unless a patient is a family member or a VIP, most physicians will not allot a patient any more time than the number of minutes that is the “standard of care.” Some doctors are more caring than others, but the for-profit system that we have in the United States rewards oncologists financially if they squeeze in as many patients as possible. A surgical oncologist will want to do surgery; a medical oncologist will want to do chemotherapy; a radiation oncologist will want to do radiation. This is what they know and what they are paid to do; and most oncologists want to get on with it as quickly as possible.

What they will usually not do is spend extra time consulting with specialists and/or looking in the medical literature for newer and better ways to treat their patients. They will generally not become knowledgeable about any kind of treatment outside their specialty, such as nutrition or any type of complementary medicine. I suspect that most oncologists would be willing to spend the time if they were paid, but insurance in the United States will usually not reimburse for these kinds of activities. In fact, the extra time that an oncologist would have to spend would actually cause them to lose income.

It seemed to me they just wanted me to follow their program, but I knew from even a very quick survey of the literature, that cancer decisions are not easy and simple. The treatment is often unsuccessful, and the side effects can be life threatening. Every patient’s case is different, so the “one-size-fits-all” approach on which traditional cancer treatment is based may not be the best way to proceed. Every year 40,000 women in the United States die of breast cancer after getting the standard of care. I did not want to be one of those statistics.

Because I have an academic background, it was natural for me to jump in and do a lot of research. I went to books, journals, and the Internet. I also got a huge amount of help from other patients. I told lots of people that I had breast cancer, and I gave them permission to tell anyone they wanted. My thought was that the more people they told, the fewer I would have to tell. But I had a huge side benefit—because breast cancer is so common, lots of former patients offered advice and support. I also joined a local breast cancer support group and an online support group at breastcancer.org. These patients were incredibly valuable to me. They referred me to doctors, including an integrative oncologist; they told me how to save my hair through chemotherapy; they told me about a program to reduce side effects through fasting; I was able to avoid neuropathy, mouth sores, and much more.

As of now, I have no evidence of breast cancer, but I am at high risk for recurrence or metastasis, so I am not able to simply return to the life I had before. Conventional cancer care offers periodic tests to see whether the cancer has returned, but it does not offer anything beyond hormone therapy to prevent the cancer from returning. The problem is that if it returns it will likely no longer be curable. I had to go outside of conventional oncology, where I found a lot of evidence that changing one’s “terrain” can keep the cancer dormant. Working with an integrative oncologist, I follow a program of diet, supplements, exercise, mental/spiritual practices, and avoidance of environmental carcinogens.

I learned a great deal from my cancer experience that most people don’t know, and I wanted to share my experience. I wrote a book that I hope will help other patients take charge of their care, to help them make the best medical decisions and to stay in remission afterward.

Notable News: August 2018

The death of legendary singer Aretha Franklin received a lot of attention this month, but the cancer that killed her is in need of more awareness, say experts in a huffingtonpost.com article. The five year survival rate for pancreatic cancer is a very low eight percent. The disease often has no symptoms in the early stages, spreads early, is resistant to treatment, affects vital functions and, despite being thought of as rare, is increasing in frequency. However, there is some promising new research in the detection of pancreatic cancer (you’ll read about it in the next paragraph). Heightened awareness, funding, and research are needed to help combat this deadly disease. You can start by learning more here and, in case you missed it, you can find this month’s profile in which Alison Greenhill tells the story of her late husband’s experience with pancreatic cancer here.

The promising news is that a blood test could offer early screening for pancreatic and other cancers, according to research reported by dailymail.co.uk. In one study, scientists discovered that they can detect 95 percent of cancers through one blood test thanks to a protein produced by malaria parasites. When ten cancer cells were exposed to the protein, nine of them successfully attached to it. The test can also detect the cancers at any stage and help identify the aggressiveness of the disease. Among the cancers the test can detect are liver and pancreatic. Pancreatic cancer tends to have a low survival rate because it is often not found until the late stages of the disease. This blood test could allow for earlier detection. More can be learned about the potentially life-saving test here.

Another blood test has been found to detect melanoma with an 80 percent accuracy rate, says sciencealert.com. Caught early, the melanoma survival rate is 95 percent, but if it’s not detected early, chances for survival are below fifty percent. The test works by detecting antibodies that the body produces when melanoma forms. Currently, melanoma is detected through biopsies which are invasive and have a slightly lower accuracy rate than the blood test. The researchers hope to take the test to clinical trial and ultimately hope it will be used to detect the disease prior to biopsy in high-risk patients: those with fair skin, a lot of moles, and/or a family history of melanoma. More about this blood test can be found here. There is also a better way to determine which melanoma patients may benefit from immunotherapy. You can learn about that at axios.com here.

Another immunotherapy update comes from a recent study that may offer new insight into immunotherapy treatments, says geekwire.com. While immunotherapy has been a game-changer in treatment for many cancer patients, it doesn’t work at all for others and it can also come with some life-threatening side effects. Researchers set out to better understand the therapies and discovered how the components talk to each other in a process called signaling. It appears that the speed and strength of the signaling affect how the body responds to the treatment. It is the difference in the signaling that may help researchers find a way to reduce or eliminate the dangerous side effects and may also lead to making the treatments more effective. More information about this promising research can be found here.

As important as treatment is, keeping on top of when to be screened can be crucial to successful diagnosis and treatment. There are now more cervical cancer screening options for women aged 30 to 65, and you can learn about those at cnn.com here.

With all the positive research and advances in detection and treatment, it’s important to be aware that not all cancer patients have equal access to the best healthcare. It turns out that the disparities in minority health that we told you about here during National Minority Health month also apply to children. African American and Latino children are more likely to die from cancer, reports npr.org. Race and socio-economic status are factors. A comprehensive look at the research about the inequities in healthcare and survival rates for minority children can be found here.

Hopefully, the healthcare gap and survival rate can be narrowed because a new study shows that life is pretty good for most patients and survivors. The majority of current and former cancer patients who are 50 or older are happy, reports sciencedaily.com. The study showed that two-thirds of cancer patients fit the researchers description of complete mental health which was characterized by high levels of social and psychological well-being and being happy and/or satisfied with their daily lives. The cancer survivors were even happier with three-quarters of them meeting the complete mental health criteria. Learn more about this very happy study here.

Patient Advocacy: 15 Winning Ways to Attract More Readers to Your Blog

Have you ever had the sinking feeling of pouring your heart and soul into writing something you felt sure people will want to read, only to find this isn’t the case? That, apart from your Mom and your best friend, it feels like no one else is reading your blog?

Having your own blog is a powerful way to boost your online advocacy. Blogging shows your commitment and passion for your cause. It’s also an extremely effective way to build a community and engage more people in your cause. However, it can be disheartening to find yourself with so few readers.

If you want more than a handful of people to discover your valuable content, then this post is for you. I’m going to show you how to find more readers for your blog and promote it to a wider audience. The following tips come from my own experience as a blogger over the past nine years, along with tips from some of the smartest patient bloggers I know. I feel sure you’ll find their advice helpful as you focus on growing your own blog and building your readership.

Let’s get started right away with our first tip.

1. Optimize Your Blog’s UX

Let’s begin with how your blog looks. What is the user experience (UX) like for your readers? How easy is it to navigate around your blog? Susan Rahn gave her blog, StickIt2Stage4, a complete overhaul this year. “I updated the template to something that was more aesthetically pleasing and easier to navigate,” she told me when I asked her for her best tips on creating a better blog.

You should check also to see how easy your blog is to read on mobile devices. Does your site load quickly? A good site will load in 2 seconds. If your blog is taking longer than that, consider that around 40% of people will leave a site if it doesn’t load in 3 seconds (check your blog’s loading time with a tool like Load Impact).

2. Provide Helpful Information for Readers

While your blog may contain personal stories about your experience and that of others, it’s also a good idea to provide helpful resources for your readers. “Having pages that have helpful information such as organizations that offer conferences, support or help in some way – either financial or trips is very useful”, says Susan, “especially if you can personally recommend them.” Susan also suggests including a list of other bloggers that you read and can recommend to readers.

3. Make It Easy For Readers to Find Information on Your Site

Providing helpful information is great, but you also need to be sure that readers can find that information. By adding categories and tags to your posts, you make it easy for readers to find the information they need when they come to your blog. It also increases views on your other posts tagged with the same keywords.

4. Hook Your Readers with a Great Headline

When it comes to writing your posts, spend some time creating a great headline. Your headline is the first (perhaps only) impression you make on a prospective reader. A good headline frames your content. No matter how amazing your content is, few people are going to click through to read it if they’re not immediately captivated by your headline. The kind of headlines which perform best include:

  • “How To” – e.g. “How to Prepare for Surgery”
  • List-Style – e.g. “5 Tips for Dealing with Chemotherapy”
  • Questions – e.g. “What is Chemo-Brain?”

Try adding “power” words and phrases to your headline, (such as best, tips, empowering, challenging) to create more engagement. Download a list of 90 headline power words here.

5. Keep Readers’ Attention with Your Introduction

When you have hooked readers with an irresistible headline, you want to keep them reading. Start by asking a question, or share a striking quote, a startling statistic or a personal story. Don’t make the intro over-long or your readers will quickly lose interest. Aim for around the 100-word mark. Make every word count. Establish your rhythm and pace with those first words – you can slow the rhythm down in the body of your post later if you wish.

6. Add Visual Appeal

We live in a visual world. If content is king, then visual content is queen. And when it comes to creating visual content, don’t be tempted to reach for the nearest stock photo. These days there’s no excuse for using boring stock images. In this post I share some of my favorite places to source images for free to enhance your social media posts. A good tip is to create your own graphics with the title of your blog and/or your name and include it each time you share a link to your blog on social media. People will soon start to recognize your own unique “brand.”

7. Maintain a Consistent Posting Schedule

To create and maintain interest you need to post consistently to be able to stay in front of your audience’s eyes. Dee Sparacio, who blogs at Women of Teal, says it’s important to maintain “a pretty regular schedule so your followers are not visiting your page and seeing an old post.” Barbara Jacoby, of Let Life Happen, told me that the only thing that she has ever done to promote her blog was “to consistently write and post a weekly blog and research and post a daily ‘In the News’ article.”

Nancy Stordahl, the creator of Nancy’s Point, also advocates for consistency. “Try to post consistently if you want to develop a loyal readership,” she says. “This takes commitment (work), which means posting on a regular schedule that works for you. This might be weekly, every other week or monthly. This way readers know what to expect, plus it keeps you focused. I post weekly (usually the same day) because that’s what works for me. Consistency is key.”

One of the best ways to keep a consistent schedule is to create recurring content on your blog. Readers will then come to expect and look forward to this content each week. Examples could be creating a weekly round-up post as I do on Journeying Beyond Breast Cancer, or a Monday Motivation post.

8. Leverage Guest Blogging

Whether you invite a guest blogger to blog on your site, or you guest blog for someone else, guest blogging is one of the most effective ways to increase your blog’s traffic. Not only do you get the opportunity to build your authority and increase your visibility, you can also leverage the social following of your guest blogger when you mention them on social media. Beth Gainer, who blogs at Calling The Shots, endorses this strategy. “Offer to guest post for others’ websites,” she recommends. “I have published several guest posts, and my posts have been shared. It’s a great way of having others notice your blog.”

9. Respond to Comments

Have you ever taken the time to leave a comment on a blog and had no response? It’s disappointing and may well discourage you from commenting again. An active comments section is a sign to others that your blog is a community that cares and wants to help each other. Susan Rahn believes that this kind of interaction is important. “It lets readers know you are paying attention and you care that they are reading,” she says.

Take time to comment also on others’ blogs. “By leaving a meaningful comment on a post, you not only build community with others,” says Beth Gainer, “but others can link to and get to know your blog. I try to leave thoughtful comments on others’ blogs because I am a part of a larger community of writers, and it helps to reach out. As an indirect result of my posting comments, bloggers have visited my site and left comments.”

10. Share Your Content on Social Media

Whether it’s a Twitter, Facebook, Snapchat, or an Instagram account, being active on social media is the best way to share your content with a wider audience. Dee Sparacio first set up a Twitter account with the name of her blog, @womenofteal to share her content. Then she started a Facebook page, again using her blog name. Dee advises setting up a specific page for your blog (and not just sharing via your personal Facebook account). “By having this blog page, I have people who follow me for my advocacy work follow that page and not my personal page.”

Susan Rahn also recommends connecting your blog to all your social media accounts. She has added a blog link to her Instagram bio too. “So all I need to do is create an Instagram post and direct followers to the link in my bio.”

11. Re-Share Older Blog Content

According to Susan, “re-sharing a blog post from time to time that is relevant to current events or conversations has been helpful” in growing her blog. “New followers may not have gone back through archives to read past posts so it’s new content for them,” she points out. This is a super tip. I’d add to this by saying that it’s a good idea to go back to the original post and see if it needs updating in light of current news or developments. Do you need to update a statistic or fact? Is there new research you can add to the post? Or a quote or comment to make it even stronger second time round?

12. Make It Easy To Share Your Content from Your Blog

When more people share your content, you increase the chance of driving more visitors to your blog. Make sure your social sharing buttons are clearly visible. By making it easy for visitors to your site to share your content, you increase the likelihood that they will take this action. To generate even more shares, install Click to Tweet, a handy tool which generates one-click tweet boxes or links that can be shared throughout your blog or via email.

13. Grow Your Online Followers

“Seek and ye shall find,” recommends Terri Coutee, founder DiepCFoundation, a non-profit organization providing information on options for breast reconstruction after mastectomy.   “I hold fast to this mantra even after blogging for over 3 years,” she says. “Just as with any business, bloggers must find who is interested in their content. Look for social media communities talking about what your blog content focuses on and cast a wide net. Don’t rely on just a few hashtags and groups. Visit those hashtags, those groups and see who they are connected to. Friend, like, re-tweet, and follow these people. Share your content across more than your own “wheelhouse” because when you least expect it, someone in one of those groups may need what you’re blogging about.”

The more people who follow you on social media, the more you can amplify your content and increase your social shares. Dee Sparacio recommends @mentioning (tagging) a person or an institution whenever you reference their research on your blog. This not only brings their attention to your blog, but it’s also a way to grow your followers. The key here is to find followers who share your interest and will be most likely to share your content. A great way to find like-minded followers is to join a Twitter chat related to your disease or condition, such as #gyncsm, #lcsm, #bcsm, etc. If you’re new to Twitter chats, you can learn more about how to take part here.

14. Use Relevant Hashtags

Hashtags are a powerful way to maintain your visibility on Twitter and Instagram and boost engagement with your followers.  According to Twitter’s own research tweets with hashtags show a 100 percent increase in engagement (clicks, retweets, likes and replies). Hashtags can also expand the reach of your message beyond just those who follow you to help you grow your network. Be sure to include the relevant hashtags when you share a link to your blog on social media. For more information on using hashtags strategically, read Everything You Ever Wanted To Know About Hashtags in Healthcare…But Were Afraid To Ask!

15. Send an e-Newsletter to Subscribers

Newsletters can help keep your blog top of mind with readers. Use it to send an email digest of your most recent blog posts or notify your subscribers when you publish a new post. “I would advise anyone who wants to increase readership to her/his blog to consider sending out a monthly or weekly email with links to new posts and possibly one or two older ones,” recommends Nancy Stordahl. “I became very frustrated with Facebook’s algorithms because it seemed no one was seeing posts I shared. Having your own email list puts you and your readers in control. In my emails, I also share a couple of articles that have been in the news, or that I think might be of interest to my subscribers. Sometimes I share something personal and I often bounce around ideas. I love my subscribers and always value their input!”

Both Susan and Nancy use MailChimp as their email list provider. “I added a MailChimp widget that would popup to invite readers to subscribe (even though they are very annoying),” explains Susan. “Through that widget, I was able to set up an email blast at a predetermined time after a new blog was posted.”

Some bloggers are reluctant to set up a mailing list because they think it’s going to be a lot of hard work. Nancy has this advice to share: “Mailchimp is an easy setup and it’s free up to 2,000 subscribers. And don’t worry about how many subscribers you have. It takes a while to build a list of readers that truly want to read your posts. The ones that stick around are gems. It’s worth the extra work, for sure.”
If you’re interested in setting up your own email list, read How to Build Your Email List The Right Way to learn more.

Be Real, Be Authentic, Be You!

A final piece of advice is to be yourself and write from the heart. In Susan’s words, “Just be authentic. Be true to who you are. Let readers get to know you through your blog as if they are sitting down having coffee and conversation with you.”

Catherine Foy, who blogs at My Triple Negative Life, echoes Susan’s advice. “Be yourself when writing (as if you are talking/giving advice to a friend),” she says. “Don’t concentrate on follower numbers. Engage with like-minded people through social media or chats, follow people or organizations that you admire. Always be true to yourself and treat everyone online with respect.”

While it may be gratifying to have lots of blog readers, those numbers aren’t really what count. “We write for a reason and purpose,” Terri Coutee reminds us, “Telling your story should ultimately have the end goal of making a difference in someone’s life.” Even if you have only a handful of readers, you still have an incredible power. You have the ability to connect directly with every one of those readers and impact their lives. Perhaps it’s one piece of information which you share that’s the missing puzzle piece that someone needs right at that very moment of reading it.

If telling your personal story is the lifeline that even one reader needs to be able to hold on to hope, then your blog will be a precious gift to the patient community. As writer, Connie Rosser Riddle told me, the thing that sustains her blogging is writing from her passion. “Throughout life, I’ve been fascinated by stories, whether they were ones I read in books, or those of real life unfolding,” she explains. “Sometimes my blog posts concern my experience having triple-negative breast cancer. Those stories come from cancer intersecting with daily life, finding meaning in the moments of coping with reality and discovering beauty along the path.”

If you’d like to learn more about setting up your own blog from scratch, check out this guide.

Family Member Profile: Alison Greenhill

Family-Member Profile
Alison Greenhill
Pancreatic Cancer

It’s been little more than a year since Alison Greenhill lost her husband Richard to pancreatic cancer. Richard was 47 at the time of his death and the couple had been married for 18 years. They had a tortoiseshell cat named Nibbles. Richard was a Registered Nurse and Alison worked for and continues to work for a major airline. Despite a history of Crohn’s disease, Richard was a generally healthy guy so when he started complaining of stomach pains in September 2016 he was referred to a gastroenterologist.

The couple had just returned home from a cruise and Richard’s stomach pains were severe enough to send him to the hospital, but all the test results done by the gastroenterologist were negative. The doctors didn’t know what was causing the pain, but it continued through December when Richard was diagnosed with chronic pancreatitis as a possible result of Crohn’s disease. Crohn’s is an inflammatory bowel disease that can cause abdominal pain and lead to a host of other issues so the diagnosis made sense.

But, in January Richard was back in the hospital with jaundice and he received a couple of stents to relieve bile duct blockage. He also had a number of tests done including an MRI and several lab and blood tests, but there still seemed to be no definitive answer as to what was causing Richard to be so sick. Alison recalls being frustrated that they still didn’t have more answers and says she felt like things were moving at a snail’s pace. Richard, she says, thought his symptoms indicated cancer, but on his birthday, also in January, they were told that Richard did not have cancer. “When they said it wasn’t cancer, it was his birthday,” says Alison. “We couldn’t have gotten better news.”

Ten days later Richard started vomiting and was back in the hospital with a blood infection. Alison says he recovered from the infection, but that it had almost killed him and that doctors were still saying they weren’t sure what was wrong. Finally, at the end of February Richard got referred to the Mayo clinic. Alison says they got there on a Thursday and by Friday evening the oncology department had been added to Richard’s daily report. Richard had stage four, pancreatic cancer that had metastasized. “It was the worst possible diagnosis with the worst possible cancer,” says Alison. “We were just numb.”

The Mayo Clinic oncologist suggested Richard start chemotherapy and referred him to a local oncologist who took over his case. Two weeks later, in March, he started chemo. During chemo, Alison says his numbers were going down, but Richard had a bowel blockage, another bout of jaundice, and an infection that interrupted his chemo. They learned that the tumor was covering his pancreas and he had another tumor on his liver. By the end of June he was in Hospice care. Richard remained positive through it all, says Alison. “My husband was like a rock. I don’t know how he did it,” she says adding that Richard made peace with his diagnosis. “We decided were were going to handle things the best we could.”

After his death, Alison says she had a lot of ups and downs and a lot of anger, but that, through Hospice, she got a grief counselor who helped her through each step of her grief. “She was wonderful from the beginning,” says Alison who focuses on remaining positive rather than letting herself get caught up in questioning why they were told Richard didn’t have cancer and why his cancer wasn’t found sooner. “I wish we would have known more. We didn’t know what we were working with,” says Alison, but she knows they did the best they could at the time. “I can’t keep going backward,” she says. “I would never be able to move forward.”

Along with the grief counselor and exercise, which she says helps her to stay positive and outgoing, Alison says she learned to accept help from others. “You have to let people do things for you. As time went on I realized I can’t do this by myself,” she says. Alison received a lot of help from her parents and had a strong support group. “Lean on your family. Let people help you,” she advises. Although it’s been difficult reaching each milestone or holiday throughout the year she says, “I’m better than I was a year ago.”

Now, Alison says it is important to her that others might benefit from what she and Richard went through. “I pray every day that no one else has to go through this,” she says. Richard also hoped his story might help others. “He said that he hoped one day we could help someone else,” she says. “He said people can learn from this.”

Alison wants people to hear her story and know they aren’t alone, but more importantly she wants people to do whatever it takes to get answers.“You’ve really got to speak up for the patient,” emphasizes Alison. “If you don’t have the answers and the doctors don’t give you the answers, don’t take no for an answer. Take it to the next level.” Alison says that patients and caregivers shouldn’t be afraid to ask questions and to push for more information. She says, “Keep fighting for your person.”

Exercise and Nutrition Before and After Myeloma Treatment: What You Should Know

Living Well with Multiple Myeloma

Exercise and Nutrition Before and After Myeloma Treatment: What You Should Know from Patient Empowerment Network on Vimeo.

Downloadable Program Guide

Exercise and nutrition are important components to long-term health for everyone. But as a myeloma patient, are there specific tips for exercising safely? Can incorporating simple lifestyle changes improve and maintain good bone health? This webinar, featuring physical therapist Melanie House and dietitian Alexa Welch, both from University of Iowa Hospitals and Clinics, will provide guidance for individuals looking to increase their overall health through diet and exercise.


Transcript:

Andrew Schorr:
Greetings. I’m Andrew Schorr coming to you from Quebec City, Canada. I’m delighted to be here, and hopefully some of our Canadian friends are on with us. We’re going it go around the US as well with some leading experts in this important Patient Empowerment Network program produced by Patient Power. And the program is Exercise and Nutrition Before and After Myeloma Treatment, What You Should Know.

And we have some very knowledgeable experts who will fill you in, so take notes, with stuff you can discuss with your caregiver if you’re a patient, with your family members and for you to know so you do as well as you can living with myeloma whether you are going through treatment like transplant or on multiple drugs. Okay.

Lots to talk about, and we have received many of your questions already, but if you have a question send it in to myeloma@patientpower.info, myeloma@patientpower.info. I want to thank the companies that have provided financial support for this program. We’re very grateful to them. They have no editorial control, but they want to support the myeloma community. Those sponsors are AbbVie Incorporated and Celgene Corporation and Takeda Oncology. So thanks to them. All right. Ready to get started?

Let’s go first to Cleveland, Ohio, where he is joining us by phone, and that is my friend Jim Bond. Welcome back to our program. Thank you for being with us, Jim.

Jim Bond:
Oh, you’re welcome. Thank you for having me. It’s good to be here.

Andrew Schorr:
So, Jim, you were diagnosed with multiple myeloma. What is it, like 26 years ago?

Jim Bond:
Yes, in 1992.

Andrew Schorr:
Okay. You’ve had a variety of treatments and clinical trials, and you’ve had transplant, and then you also developed a second very serious cancer, AML, so you’ve had altogether I think four transplants. Is that right?

Jim Bond:
That’s right.

Andrew Schorr:
Whoa. Okay. Now, we should mention that in a couple of days, Jim, you are going to once again be on your bicycle four days riding 328 miles. What is that ride that you’re doing now for I think the 12th time?

Jim Bond:
It is the 12th time, and it’s the American Cancer Society Pan Ohio Hope Ride, which my wife Kathleen founded and leads. She got me to ride, and I’ve been able to do it 11 straight years and I’m done training. I trained an hour this morning and I’m ready to go, so in two days we start from Cincinnati and four days later 350 of us will arrive in Cleveland, Ohio.

Andrew Schorr:
Okay. Well, we’re all riding with you, Jim. Exercise and physical fitness has played a big role for you, and we’re going to come back to that in a minute, and you’re going to tell your story how your commitment to exercise has really helped you survive myeloma and also get the treatment you needed for acute myeloid leukemia, they call it. So we’ll be back to you, but I want to introduce our other experts.

So let’s go to our experts, medical experts who are in Iowa City, Iowa, at the University of Iowa Hospitals first bringing back to one of our programs oncology physical therapist, a veteran in the field, Melanie House. Melanie, welcome to our program today.

Melanie House:
Thank you, Andrew. It’s great to be here.

Andrew Schorr:
Okay. Thank you. And, Melanie, just to understand, you’ve been working with oncology patients including on the transplant unit there for about how many years?

Melanie House:
Well, oncology patients actually for most of my career. Probably in the early 90s I started working on some of the oncology floors, but I’ve been specific been overseeing the bone marrow transplant unit since January of 2010.

Andrew Schorr:
Okay. And they have some myeloma patients who come through there, right, who have transplant?

Melanie House:
Yes. Actually, that’s a significant part of our population, is the folks with multiple myeloma.

Andrew Schorr:
Okay. We have a lot to talk about. Okay. But you have a colleague I’d like to introduce who is a dietician with oncology patients and also works on the same floor as there with people who are going through a lot including transplant. So Alexa Welsh, thank you for being with us also from the University of Iowa Hospitals.

Alexa Welch
Glad to be here today.

Andrew Schorr:
How long have you been in the dietician field?

Alexa Welch
I have worked as a the dietician for three years, and then I have worked on the same floor as Melanie with the bone marrow transplant patients now for two years.

Andrew Schorr:
Okay. Wow. All right. So let’s start with exercise, Melanie. So, you know, I’ve interviewed a number of myeloma patients over the years, and there are some people who find out they have myeloma when a family member gives them a hug and then they have like cracked ribs, and they never knew that they had this illness they never heard of. They never knew that their bones were at risk, and then they go in and they get this diagnosis. And it’s terrifying. So you think, well, gee, if somebody giving me a hug can crack my ribs and I have myeloma how on earth can I exercise? What do you tell people related to these bone issues?

Melanie House:
Well, I always take time to educate my patients on where their lytic lesions or pathologic fractures may be located. In my experience that’s actually an area where patients often don’t realize, perhaps they’ve never viewed their imaging. And I encourage my patients to better understand that because if you don’t realize where those lesions are then you wouldn’t have good information to guide other activities or precautions that you might need to take.

Andrew Schorr:
Okay. So at step one, know where you have lesions. Step two‑‑but that would freak me out. I’m a leukemia survivor myself and I haven’t had those bone complications, but if I did I would be just terrified to do stuff. But yet, exercise is good for us, right?

Melanie House:
Well, I think‑‑yes. Exercise is good for you as long as it’s in the proper dose, right? And so it needs to be the right intensity, the right frequency, the right load. And so that’s where you really need to work with a professional who has good understanding of where your lesions are and understands the different biomechanical principles. You know, how the muscles might pull on that bone, that could be good or bad. How posture or lifting technique might impact your fracture risk.

So it’s important that there is a professional who’s knowledgeable working with you, a physical therapist that has access to those films or those scans to help inform them giving you the proper prescription for exercise.

Andrew Schorr:
A couple more questions for you now. So some of us know my friends Jack Aiello, who was treated with transplant years ago. He’s doing great. Also like you, Jim, a long‑term survivor of myeloma, but he was left with neuropathy, so he walks with a cane, sometimes he uses a scooter. But yet, you know, he’s aging like all of us and he needs exercise for his body. So what about if you have that complication of neuropathy, which some people do with myeloma?

Melanie House:
As far as exercise, we can find some form of exercise that’s safe anywhere along that spectrum. That all depends on the person’s balance response, their tolerance for weight bearing through their legs because some people have not only those sensory changes but they have more painful kinds of sensory changes with weight bearing.

So, again, it’s very specific to the patient, but the one thing I do want to emphasize about neuropathy is it is not a‑‑I have a lot of patients who say to me, well, I know my balance is bad because I have neuropathy, end of story. And I say to them, well, actually, you know, we have the potential to improve your balance because fortunately your brain is still connected to your muscles through your nerves, and we can recruit other muscles and help them work more efficiently together to improve your balance response.

And so I actually train my patients with neuropathy so that they can improve their balance and have heard countless reports back from patients who were discharged from the hospital and gone on to do outpatient therapy and recovered balance that they never thought they could.

Andrew Schorr:
Wow. How do you do that? Is it like practicing standing on one foot, or give us a clue?

Melanie House:
Well, that is actually‑‑I’m a very practical person, and I work with people that are laborers. You might work with a truck driver or somebody who is a farmer, and these aren’t individuals that are typically going to see (?) a gal at tai chi or something like that, and it is that simple. But if you can challenge yourself in single‑limb balance and do it safely that is really going to force your nervous system to have to respond more quickly and efficiently.

That is actually the test that I do and the exercise that I prescribe, but I set them up to do it safely. So if you can do this test and this exercise standing in a corner in your home where two pieces of dry wall come together with a chair in front of you then you’ve got the walls that can catch you behind and to the sides with the chair in front of you so that you can catch your balance if you need to and when you need to.

Yes, single‑limb balance is a great way to challenge ourselves. And you might get the feedback, well, I never stand on one leg, and to that I say, actually when we walk we’re standing on one leg over and over. So it does prepare a person to be better on uneven surfaces, slopes and conditions like that.

Andrew Schorr:
Okay. And we were talking about bone complications, and obviously if you’re worried about these lesions and you fall, which you might if you don’t have the best balance‑‑

Melanie House:
Right.

Andrew Schorr:
‑‑and that triggers more bone issues.

Melanie House:
Correct.

Andrew Schorr:
So we don’t want to really understate balance is important, and many of us and the people typically, not always, with myeloma are older, where balance isn’t as good anyway. So balance, we got to think about balance, right?

Melanie House:
Very important. Very important.

Andrew Schorr:
Okay. All right. Let’s talk a little bit about nutrition, Alexa, for a minute. So there you are in the transplant unit, and Melanie was mentioning a number of patients who come through are people being treated for myeloma. When you get blasted or even with less intensive transplant there are a lot of issues about feeling like you can eat. Maybe you have mouth issues, pain, etc.

So first let’s talk about somebody getting ready for transplant because that’s still used in myeloma in some quarters. How can somebody fortify themselves if they’re told, well, transplant is what we’re recommending for you?

Alexa Welch
So one of the most important things we want patients to be aware of before transplant is maintaining your weight. Try not to lose any weight. We don’t want you losing muscle or losing strength at all before transplant. So eating a well‑balanced diet while you can, while your appetite is still good. Eat from all the food groups. Get your fruits and veggies in. Get your proteins in. Keep your muscles strong. Keep your weight up. That’s pretty much the coming into transplant being prepped and as strong as possible.

Andrew Schorr:
Okay. But you’re sick going into transplant, so is this like I don’t want to say force feeding, but mean if there’s a care partner there, are they saying, George, eat your vegetables. You’re 72 years old. I mean what‑‑is it‑‑you have to make an effort I guess.

Alexa Welch
Yes, so actually most of the time when I see patients present on day one of hospital admission they are usually feeling pretty well and have been eating well at home and actually have not been losing weight usually. So sometimes when they’re first diagnosed they’ve lost some weight. They weren’t eating well. They were tired, they didn’t know why. That is usually behind them before they come in for transplant.

So typically actually when they get here they are feeling pretty good and have been eating pretty well. It’s going into their admission where they’re getting the chemo and they’re getting transplant that they start to not feel very well again.

Andrew Schorr:
Okay. Let’s talk about that. So people‑‑and of course we have groups in myeloma going through different kinds of treatment. Let’s talk about transplant for a second. If they’re on your unit how do you help them with their diet when, let’s face it, this is rough business. And Jim’s been through it four times. We’ll talk to him about it. But from your point of view how do you help people stay strong?

Alexa Welch
Yes, nutrition is very individualized just like Melanie was saying can for exercise. You just kind of have to figure out where the patient is and what they’re struggling with most. Some of the most common side effects are going to be loss of appetite, mouth sores, nausea, vomiting. We kind of take each of those individually.

So loss of appetite, typically we recommend doing smaller meals more often throughout the day instead of forcing yourself to eat three big meals. When you don’t have an appetite and you’re not hungry and you’re forcing food down sometimes it’s easier to force a smaller amount and try that every couple hours instead of sitting down to a big, overwhelming meal that you can barely even get three bites down and then you just feel hopeless because there’s no way you can finish all that food at once.

So sometimes just having snacks like peanut butter and crackers or fruit and cottage cheese or something small like that and breaking that up throughout the day helps get in enough calories and protein so that you’re not losing weight or losing strength. So usually that is what we do for loss of appetite when you are kind of force feeding. And then when you get to that point we’re not really super worried about eating from all the food groups, so if you’re not able to get your fruits or your veggies in for those few days I’m not going to be super concerned. Or a milkshake is the only thing that sounds good, then absolutely we want you getting your calories and getting your protein that way.

Andrew Schorr:
I’m glad to hear you say that because my‑‑my little kid when I went through chemo would bring me a great chocolate milkshake and I didn’t feel guilty at all. So that’s okay. You’re giving us permission.

Alexa Welch
Absolutely, yes. Absolutely. And I think most of my doctors and team agree with that, that if that’s the only thing that they can get down, then we’re definitely not telling them that they cannot have that.

For nausea and vomiting, usually our pharmacists and our doctors have medications that they can get on board to help, antinausea, antivomiting medications that help control that. And then from my end I just make sure my patients know that right after they get a dose of that medication is when they should try to order some food or eat some food so that that’s fully kicked in and they can try to get as much food down and keep it down as possible. Obviously, if you’re force feeding yourself and it’s going to come back up, it doesn’t do any good. So medication does usually help control the nausea. We’ve just got to make sure that we find the right cocktail for them.

Andrew Schorr:
All right. Post‑transplant, and this may be for people who are on these two‑, three‑, four‑drug combinations now for myeloma, what are you recommending now for a healthy diet? We’re doing some recipes on our website and people say try this, try that, but what are you recommending so that people can regain their strength or be as strong as they can because they’re probably getting some ongoing medicine?

Alexa Welch
Yeah, so appetite usually is kind of slow to come back after transplant. I do hear from my patients who have left and then either come back for a second transplant or hear from our outpatient dietician that works with them that going home just helps your appetite too. Being able to eat your own food in your own home helps a lot. Usually as soon as appetite comes back patients are able to kind of eat, you know, back to normal, back to three meals a day instead of snacking throughout the day.

Recovering, honestly, is still just adequate calories, adequate protein so that they’re still not losing weight. I still never encourage weight loss even after transplant is done because that can be muscle loss and can affect your strength overall. We want you to not be losing weight after transplant as well. And then in general I do a food safety education with patients before they leave the hospital, so making sure‑‑you know, because after transplant your immune system is still not perfect, and we want to make sure that we are eliminating as much bacteria from the food you’re eating so that doesn’t cause any issues, you don’t get any food‑borne illnesses. So we go over that kind of stuff.

Besides the food safety and then adequate calories, adequate protein, you know, weighing themselves, making sure they’re not losing weight. That’s pretty much it. We just want you to stay strong and make sure you’re eating well. And then once you are feeling a little bit better focusing again back on that balanced nutrition, so eating from all the food groups and getting your fruits and veggies in and all that.

Andrew Schorr:
One last question for you now. So there are these products you can get at the supermarket, you know I don’t know the different brands, Ensure and I’m sure there are other brands, high calorie. Do you recommend that to people if they’re not eating a plateful of food?

Alexa Welsh:
Yes, absolutely, especially when they’re in the hospital and their appetites are bad and they’re not eating very much food or they can’t force down solids sometimes liquids do go down better. We use Ensure here. That’s just who our contract is through, but Boost is an equivalent. Equate, or the Walmart brand make their own. That’s an equivalent. I think Costco and Sam’s will have their own.

They all essentially serve the same purpose, which is higher calorie, higher protein in a smaller amount and so that you’re not again having to force feed yourself all day long when you don’t feel well. I would say those are indicated again when your appetite is not very good or you’re having issuing with nausea and vomiting and maybe that’s the only thing that stays down. But once your appetite is back and you’re eating better those aren’t really necessary as soon as you’re able to maintain your weight on just food.

Andrew Schorr:
Okay. We have a lot more to talk about about food and exercise, but Jim’s lived this. So, Jim, you’ve been through transplant. You’ve been 26 some‑odd years. You’re riding a bike, but you’ve been in and out of hospitals and you’ve had your highs and lows. First of all about exercise. Jim Bond, what would you say to people about the benefit of exercise when you have this diagnosis?

Jim Bond:
I’d say it’s one of the key reasons that I’m alive today. And, Alexa, I agree with everything you said, and I’d just like to add a couple personal notes on my diet. I have gone through four stem cell transplants, and what I made myself do is get out of bed, starting with the first one, and it was hard because I was knocked down with the drugs they gave me. But I found that by getting out of bed and then when I was able take a few steps, and then walking around the floor pulling my IV behind me, it gave me‑‑it gave me‑‑it would tire me out, keep me from sleeping in the afternoon, and it actually helped stimulate my appetite. So I would recommend that you try that as much as you can.

If you can’t get out of bed yet just make yourself‑‑I made myself sit up in the bed as long as I could, and that sounds trivial but at times it was not trivial. And, Alexa, my wife, Kathleen, who is my caregiver, she found a high‑calorie, high‑protein drink that she brought in, and I found different flavors work for me. Orange was my favorite. But that was‑‑to me is what was key.

I found what appealed to me food‑wise, and I just ate as much of that as I could. I didn’t worry too much about three food groups. I was too sick. But when I found something that worked for me I would do it. I would also order all three of my meals when I woke up in the morning, and when they arrived that gave me the motivation to, okay, try something. If I put off ordering, then I might not even have the desire to order. So that was a little bit helpful for me.

But exercise has been key throughout my battle with cancers. In fact, exercise saved my life, as you referred earlier. I was‑‑I was 64 years old. I had lived with myeloma successfully for I don’t know many years, and then I got leukemia. And it was the kind of leukemia that’s treatment related and they said, hey, Jim, the only way you can live is by getting yet another transplant.

So they threw me in the hospital for what turned out to be three months solid. They got my leukemia down. They found a match on the matching database, and they came in my room, and I was thrilled. I said, great. When do I get the stem cells? And they said, well, we’re not sure you can live through another transplant, and I said, but that’s the only way I can live. And they said, but we can’t kill you.

So I pleaded my case. They came back and they said, Jim, the doctors who were voting against you on our committee, they changed their mind and voted yes when they heard that two months ago you cycled 328 miles, four days in the American Cancer Society Pan Ohio Hope Ride a month ago. So the exercise of not only training and riding in the bike but just every day doing something, that saved my life because they were not going to give me that‑‑turned out to be a German woman’s stem cells. They said I was not a good risk until they heard what exercise did for me.

And that’s really been true all through this thing. By exercising, doing something every day, I think it made my body able to take more and more treatments because, as we know, today myeloma is still not curable so when it comes back I want to be as strong as I can to make myself tolerate another one. Now, each day what I think of as my mantra is to be on my feet not on my seat. And right now I’m standing up talking to you because I think even standing is better than sitting. And Melanie’s great guidance at a seminar we were at helped me understand that walking is really good for us and standing is better than sitting. Sometimes it’s hard, but I make myself do that.

Andrew Schorr:
Right. Oh, boy, what a great story. And now let’s go to the guru here, Melanie. So, Melanie, I got as a Father’s Day gift a Fitbit. Somebody may get a bigger one, a smaller one, an Apple watch or just count their steps somehow. So today Esther and I are in Quebec City, where we are partly on vacation. We did 11,000 steps. And I’m a two‑time cancer survivor, chronic lymphocytic leukemia and myelofibrosis.

So, Melanie, just walking, is that good? I mean, I didn’t jog and I didn’t lift weights today, but I walked.

Melanie House:
So that is a huge accomplishment, especially when you think about what you achieved by walking. Something that people don’t realize is that‑‑earlier you mentioned the importance of load bearing to the bones in order to stimulate bone density. Well, people don’t realize that when we’re walking because of our body weight and the influence of gravity when your foot hits the ground your bones actually experience about one and a half times your body weight. So you are actually doing an appropriate dose of loading in those long bones in your legs, for example. So you’ve gotten some weight bearing in. You’ve gotten some endurance exercise in. Helps to build your cardiovascular system.

And the other thing is that walking I do want to mention because a lot of my patients, they’re very fixated on walking and I applaud them, but if we are trying to prepare people to be able to do other things like climb their stairs, then we do have to add a different type of exercise to prepare them for that.

Andrew Schorr:
Okay. What’s that? So how do I‑‑or our friend Cindy (?) Chimileski and some of the other myeloma patients have even done these mountain climbs, which have been incredible. But how do you prepare for climbing? Steps or mountain?

Melanie House:
So as it turns out, you practice for the test for most things. So if what you need to be able to do is climb stairs we need to either be climbing stairs while you are in the hospital, or in our case because we know that our patients are prone to getting low blood pressures while they’re here, it’s usually I think a side effect of the chemotherapy, then we have gone to what what’s called the NuStep. That’s the name of an exercise machine that is basically a seated stepper. So that is one way that we’re able to get people working on their stair climbing muscles in a safe with way while they’re hospitalized.

But even an exercise like bridging that’s something that can be done lying in the bed. For my patients that can’t get in the hallway we’re doing a bridging exercise which is working all of the same muscles at zero percent risk of falling down because they’re already laying in bed.

And some people like to do squat exercises which can be done and should be done over a chair or over the bed. But the one precaution there if you are dealing with fluctuations in blood pressure is if you’re doing that sit‑to‑stand motion repeatedly that could bring on that sense of light‑headedness or weakness because of the drop in blood pressure.

Andrew Schorr:
We talked about bone complications, and we were talking about people going through transplant, different medicines. So we have highs and lows with any of these blood cancers. So you and I were talking before the program and you were talking about people being aware of their numbers, their blood test numbers.

Melanie House:
Right.

Andrew Schorr:
So talk about that a little bit as to us having a clear idea of where we are, not just do we have a lesion in a bone somewhere but about our blood.

Melanie House:
So the most common complaint that I hear people say is I’m just so tired, or I get short of breath when I’m doing stairs or walking, and I think there were each some participants today that sent in some questions asking about what can I do to address my shortness of breath. And the first thing that I think about as a clinician is where are your numbers at for your hemoglobin or your red blood cell count, because our red blood cells, they are the vehicles that actually deliver oxygen to our muscles and to our brain.

And one of the most important muscles that must get oxygen is actually your heart, and so it is important to recognize whether you’re anemic. If you’re anemic I can tell you right now there is not a single reference that I could find that would support you or support me prescribing you vigorous aerobic exercise because anemia means you’re at about half of your normal amount of red blood cells yet you’re trying to do vigorous exercise. The muscles that are doing the work are going to aggressively be pulling those oxygen molecules off of the red blood cells, but you only have half the number of red blood cells that you should have to deliver oxygen.

So it doesn’t matter if your oxygen saturation probe says you’re 100 saturated. That just means that those half of your red blood cells that you have happen to be fully loaded, but there’s not enough of them to safely do vigorous aerobic exercise, and your heart could suffer the consequences. I’ve had patients who actually did induce a heart attack just from walking at a time when their hemoglobin was very low and when their blood pressure was low.

Andrew Schorr:
Okay. So let’s go over a couple things we talked about with you. One is related to bone complications, understand where you have bones that are at risk.

Melanie House:
Correct.

Andrew Schorr:
Right? Okay. That’s the first thing. And hopefully there are bone‑‑there are medications now that some people have discussed with their doctor that can try to slow the progression of those bone complications. Okay. So that’s part one. Part two is you talked about balance. That’s so important. Even if you have neuropathy don’t be freaked out that you can’t develop balance. And then related to knowing your blood counts so that what you’re pushing your body to do is healthy.

Melanie House:
Correct. Right.

Andrew Schorr:
Okay. All right. Got it. We’re going to come back for some more. I want to get some specific exercises. So walking is good. Climbing, if you have stairs in your house, those kinds of things, or if you’re training for one of these myeloma challenge trips, whatever it is, we’ll talk about that more in a minute.

Alexa, so we talked‑‑you keep saying, you know, fruits and vegetables and balanced diet and all that, but patients we have are friends in the myeloma community say, well I’m going to do this special diet in their effort to take back to control where cancer has kind of tried to take control away from them. So how do you feel about special diets, whether it’s meat, vegan, you know? How do you feel about that?

Alexa Welch
So some of those diets just end up being overly restrictive or totally cut out certain food groups, which is not‑‑I mean, there is just not enough evidence out there to support any of those restrictive diets actually really helping. Cutting out food groups like that sometimes results in weight loss, which, as I have mentioned a few times before, that’s definitely not the goal. We don’t want you losing weight. Don’t want you losing muscle.

And a lot of times when you’re sick and you have cancer and you’re going through treatment, any time you’re losing weight unfortunately it’s muscle loss. It’s not fat loss. And so then again that results in weakness and poor outcomes as far as response to treatment and recovery. So, yeah, some of those special diets, I mean, I would have to take it patient by patient if they feel very strongly about it, but, yeah, a lot of times they’re just really restrictive on certain food groups that they can’t have or should cut out totally. So I don’t usually recommend those.

Andrew Schorr:
Okay. So a couple of questions. Maybe these are myths or not. So some people have wondered, does sugar intake feed the cancer cells?

Alexa Welch
So a lot of the foods that we eat, all carbohydrate food, so whether it’s fruit, grains, rice, milk has carbohydrates in it, any carbohydrate that we take in will break down to a molecule called glucose, which are‑‑all of our cells in our body need glucose to function properly. It’s the energy that they use. So whether those carbohydrates are coming from sugar, artificial sugars or added sugars or natural sugars from fruits, they all break down to glucose.

We cannot control which cells get the glucose that we take in. Once we eat it, our body does with it what it will, so the cancer cells just happen to be very glucose hungry all the time, so they will take up and use a lot of that glucose. That being said, if you’re not eating enough glucose or not eating enough carbohydrates in general your body will break down your muscle stores to get that glucose.

And that is why you don’t want to be restricting certain food groups, especially carbohydrates because the rest of your body still needs the energy to carry on the normal functions of everyday life. So you shouldn’t be cutting out some of those food groups like the carbohydrates that are fueling the rest of your body too.

Andrew Schorr:
Okay. Another question, juicing. So people have all kinds of‑‑there are juicers you can buy, and your best friend down the street will say, oh, you’ve been diagnosed with cancer and you should be juicing, carrot juice and this juice and that juice. Any comment about that?

Alexa Welch
Yeah, so I just don’t see the issue with eating the whole food is. The whole fruit or the whole vegetable that you’re juicing, you’re taking out a lot of the fiber. You’re taking out a lot of what keeps you full, the substance to it, so then you’re having to spend a ton of money on groceries relies to get less benefit, if you ask me, because you’re taking out, again, that fiber that’s very beneficial for keeping you full, helps cholesterol.

So those are not things that you want to be leaving out of those foods that you’re taking in. You still get all the vitamins, all the minerals from those fruits and vegetables, but, yeah, eating the whole thing is more beneficial.

Andrew Schorr:
Okay. You were being conscious of our diet at the grocery store. What about the health food store, the pharmacy about dietary supplements? Comments about that?

Alexa Welch
Yeah. So one thing to be careful about any over‑the‑counter supplements like that are not FDA regulated. So you want to be careful that if you’re taking any dietary supplements, herbal supplements, any extra vitamin, C, A, whatever, that you’re clearing that with your doctor, your physician, your oncologist, your pharmacist, talking to your medical team about that and making sure that they are okay with you taking those extra supplements. Again, they are not FDA regulated, so just because they say something is in it, that hasn’t been tested. So you want to be very careful about that.

And some of those supplements can interact with certain chemo drugs. There are certain medications that you might be on every day, so you want to again clear that with either a pharmacist or a physician to make sure that it’s okay if you’re going to take any supplements like that.

Andrew Schorr:
Okay. So when I go to the gym they have a little store in the front, and they have those huge jars of protein powder. So you’re saying even that, check with my doctor.

Alexa Welch
Yes. Especially‑‑I mean, you want to make sure that if you’re going to do the protein powders like you want to make sure that it’s a brand that you trust. So in general bigger brands like Walmart’s brand or some of the‑‑like Abbott, who we get Ensure from, they have their own brand of protein. Some bigger brands like that are going to be ones that you can trust because if they were putting‑‑you know, you hear myths about people having like actually sawdust in their protein instead of real protein powder.

So those are the kinds of things you want to avoid. Usually big companies like that are more trustworthy because if they were found to have bad ingredients in their protein powders they would have more to lose essentially than some of the little companies you’re buying online that you don’t want to necessarily trust. Generally, if it says 100 percent whey protein 100 percent soy protein, those are a little bit more trustworthy.

And always, again, good idea to just run it by your doctor make sure they’re okay with it, or ask the dietician to read the label for you. Some grocery stores have dieticians that work there. Some gyms have dieticians, so use your resources.

Andrew Schorr:
Right. I will mention to people now, so we go to this ASH, American Society of Hematology medical meeting, thousands of doctors talking about myeloma among other cancers from around the world, and so now we’re talking about often four‑drug combinations for people with myeloma. So if you go into a store they don’t know that you’re taking drug A, B, C, D. They probably never heard of them nor know the profiles of those drugs and how it will line up with something they’re going to offer you. You’re not just a super healthy person who is taking no drugs coming off the street, so you have to check.

Okay. So, Jim, you’ve been listening, and you’re about to ride in a couple of days again 328 files. Now you’re of course just a subject of one, but, Jim, what do you eat? What is your diet, whether it’s when you’re doing these rides or just day in day out?

Jim Bond:
I get asked that a lot, and there’s a lot of people that really do focus on special diets. I do not focus on anything special in my diet. I focus on trying to maintain my weight. I do exercise, and for some reason since I’ve had cancer and the transplants I really have to make myself eat as much what I consider healthy food. For example, my lunch today consisted of a meat sandwich, potato chips and an apple. And that’s typical. And for breakfast I eat eggs, meat, toast and potatoes, which is‑‑turns out to be my best meal. It’s my best appetite. And a normal dinner, you know.

Yeah, we have vegetables. We have meat. I love corn on the cob in Ohio. It’s great. But I don’t worry about anything really special. I want to keep my weight up. So when I go in, and I do go in monthly for a bone strengthener I’ve been getting for 24 years now, the biggest surprise for me is, okay, how did I do on weight this month. And when it’s higher I’m happy. And typically the nurses frown at me because they’re trying to lose a little weight, but I’m always trying to maintain or keep my weight.

Now, another reason‑‑I do pound a lot of liquids. My kidneys, I was told, because of the type of myeloma I had, I was told, look, Jim, your kidneys and your bones are at risk. So they said drink, keep yourself well hydrated especially when you’re riding your bike in the summer in July in Ohio. So I drink a lot of water with something in it, you know, a Gatorade or something flavored, not just pure water. But that’s really important to me.

And yeah, it’s inconvenient. Gets me up a lot at night, you know, going to the bathroom, but I believe it’s worth it. And it drives my sodium down. When I get my chems every quarter my glucose and the rest of them are fine, but it’s all I can do to get my sodium into the normal range. So, believe it or not, even with the doctor’s okay they said, Jim, eat more salty foods, which I know is kind of weird, but that’s the way I roll, and so I really don’t worry about that.

It’s the bones though. I do worry about my bones. I’ve had a lot of bone involvement. I’ve got metal holding some of them together, but I’m lucky enough to be able to walk on my own, ride my bike. But it’s taught me, Jim, cut down on the risk. Stay off ice. Stay off step ladders, stay off stools. It’s just not worth it. So I try to do that.

But one comment you made is be sure to check with your doctor on what seems like it’s something that’s not worth it. Green tea is a good example of something a friend of mine who is a myeloma patient had no idea he should have cleared that with his doctor. Because he thought green tea, that’s fine, only to find out from his doctor, no, the medication he was taking was actually nullified by the green tea. So it’s really a good idea to run what you think is not very harmful, run those things by your doctor or nurse and make sure they’re okay with that.

But every case is different, like you said, (?) Jack, and for some reason it’s worked out pretty well for me. But I do take a few‑‑I do take a few vitamins that leading hospitals have recommended, and they’re for neuropathy and hopefully to keep the myeloma away. And I’m happy to share things, but you can get me‑‑you can find me on the internet or through somebody.

But the thing is you can’t just willy‑nilly take things. You’ve got to run them through your medical team because your case is, you’re own case, each case is different, and, sure, it’s great to talk to people but just run it by somebody.

Andrew Schorr:
Right. All good points. Okay. We’ve been getting in questions, and if you have a question now send it in to myeloma@patientpower.info, myeloma@patientpower.info.

Here’s a question we got in from Laurie. Laurie says, my husband has 13 vertebral fractures from his myeloma. He’s not a candidate for the various surgeries (?) Inaudible, kyphoplasty, etc., to do repairs, so he’s been doing plank exercises for two years, and he has a brace and support.

So one of the things he’s wondering is could tape, Melanie, like athletes do, kind of some kind of taping when he does exercise be supportive for him? Would that be a good idea, like athletic tape?

Melanie House:
Well, actually it’s a little bit different. I think the tape we’re referring to is a little different than athletic tape. It’s called Kinesio tape, and it’s been around since the 70s actually, and it is something that has been shown to help with musculoskeletal types of pain, so it could be worth exploring. If this is the same question I’m thinking of, this individual complains of the pain that radiates around the bottom of the ribs.

Andrew Schorr:
Correct.

Melanie House:
That sounds like it’s probably one of the intercostal nerves that could have some compression on it perhaps due to where the vertebrae has lost its height and therefore the rib is getting compressed and maybe pressing on a nerve. So yes, there’s some potential there. If there could be some lift appreciated on one of the ribs or just to create a little more space there.

The other thing that I thought about is when we’re laying flat‑‑I hear this all the time. I just had a patient today say to me, well, I was six‑foot‑three but not anymore, and this individual just had some back surgery done, fused his lumbar spine. And so I explained to him that it’s best if we put his back brace on when he’s laying down because that’s when the vertebrae are off‑loaded so your disks are at their maximal height, and if you can put a brace on laying down and put it on so it’s comfortable but snug, once you sit up you’ve done the supporting that you’ve needed to before everything tries to collapse.

Andrew Schorr:
Okay. Good points. Mike Furlow sending this question. He said he discovered myeloma when a plasmacytoma broke my humerus near my shoulder. My bone scan and CT scan showed no other significant lesions, but he later found significant damage to my right ankle during the surgery. So he’s wondering, is it safe to assume I have damage elsewhere? He just doesn’t know what to do. And so do I have to be particularly careful about bone injuries going forward. He’s worried. What do you say?

Melanie House:
Yeah. This sounds like a classic case where you know there’s got to be‑‑there could be some other problem in there but you can’t see it, you don’t know about it, so that fear creeps in, and that could paralyze somebody really from doing exercise that could be benefitting them.

So I would definitely recommend that he meet with his doctor or primary care provider who has access to his films, his recent scans, so like a whole‑body MRI or the PET scan, and go through, where are the lesions that I should be concerned about, and how would that guide my exercises or working with a physical therapist to come up with a safe program. Because if you don’t know where they are and you fear that there’s something electric there, I’m going to do the same thing. I’m going to think it’s safest to stay in my recliner probably.

Andrew Schorr:
Okay. So Jim mentioned a couple‑‑he mentioned a lot of significant things a minute ago, but he was saying that he knows given his bone complications there’s certain things that he’s going to avoid. He lives in Cleveland. In the winter he’s going to be real careful about ice. And if his wife says, gee, can you change a light bulb up there and it means going up on the step ladder, he’s not doing it. Okay?

Melanie House:
(?) And she probably wouldn’t ask.

Andrew Schorr:
She won’t ask, right. So the point is what about changing sort of activities in daily living so you can be active but be safe?

Melanie House:
Well, the first thing that comes to mind, and this is again going back to where I am most concerned for my myeloma patients, and that is the vertebral fractures because I‑‑it’s just‑‑it’s so sad to me when I see folks losing, progressively losing their height knowing it’s because these vertebrae are literally collapsing, and the biggest force that causes the collapse is flexion.

So when you think about in your daily life how often do you have to flex. Oh, I have to bend over to put my shoe on, I’m pulling my sock up. Oh, I dropped the paper, or maybe I’m picking something up off the floor that normally sits there like the food bowl for my cat. And so these motions can result in significant pressure forces going down the front of the vertebrae that actually lead to their collapse.

So one way that a person can change the way they’re moving throughout the day is hamstring stretching is a good start because the longer your hamstrings are the less you have to flex through your lumbar spine. But for others it’s beneficial to even use adaptive equipment. Like our occupational therapist will train people on how to use something called a reacher, and that just allows you to be able to bend over safely but not bend too far and still pick an item up so you’re at less risk of losing your balance and falling but also less risk of causing those flexion compression fractures of the spine.

Andrew Schorr:
Well, so you’re saying don’t bend down for the cat’s bowl. Maybe there’s some grabber or something will help you do it?

Melanie House:
Well, in that case‑‑I mean, there’s different ways to approach it. If you can squat rather than bend. The thing is that we all have our habits, and we don’t even realize what we’re doing until we see a video of ourselves or someone points it out. But if you know you’re at risk for compression fractures in your spine, going through some training to actually learn what ways could I move differently, what strategies could I use that are safe and still let me do the things I need to do, there’s always a way to accomplish it. It’s just that it’s very individualized for each person.

Andrew Schorr:
Okay. Remember, send in your questions to myeloma@patientpower.info.

Here’s another one again for you, Melanie, from Paula. Any thoughts on interval training or other techniques to help my body use oxygen more efficiently? So interval training, that would be like running for two minutes and then walking and running or longer. If you kind of start, stop, right?

Melanie House:
Yes. And interval training, I use interval training for patients in the hospital who can only walk 10 or 15 feet and have to sit and rest. We can call that interval training. Or, like you just said, it could be something like being on a bike or walking or jogging where you’re just doing that higher intensity and then you do the lower intensity.

So for each individual you have to find that right combination of exercise that’s still safe for you, but the first thing that I would think of in this question is again back to, okay, what are your lab values? If you’re hemoglobin is low, if you happen to be anemic, then you really do have to listen to your body. If you’re feeling short of breath, you should not be pushing through that.

So, yes, interval training would actually help you to build your endurance and your total distance that you could walk, and that to me suggests that you’re listening to your body and you’re slowing down when your body is telling you need to.

Andrew Schorr:
Okay. Alexa, lab values are not just about hemoglobin, but they’re also about creatinine. Jim was talking about kidneys. Certainly patients are at risk for kidney problems. My doctor says every time I see him, Andrew, drink more water, drink more water, drink more water. Jim was talking about that too. And also looking at whether we’re getting enough of different minerals as well. So that can show up in our lab values too. We should be aware of those, right?

Alexa Welch
Absolutely. Your doctor can test you for any vitamin deficiencies as well. Yep, your labs are very telling for, you know, if you’re hydrating properly, if you’re well nourished. But yeah, so definitely I think you’re doing the right thing staying hydrated and making sure you’re getting enough liquids. That’s definitely the best thing, one of the best thing for your kidneys.

Andrew Schorr:
There you go. I’m going to drink some more in a second. But I‑‑so, Alexa, and this is for you, Melanie, as well, but first you, Alexa. So what do we do? So you all are at the big university medical center, but even at clinics they often have a dieticians. Increasingly now some of the larger clinics have a physical therapist or maybe consulting one nearby.

Should we consult with you, not just if we’re having a transplant but we’re there for a clinic visit? Can we say, I’d like to see the dietician? I’d like to see the physical therapist because I want to be strong, I want to exercise, I want to eat right. I mean, that’s something we can request, correct?

Alexa Welch
Absolutely. I know here we have a dietician who works out patients specifically just for our cancer patients who are here for clinic visits. Usually her schedule is pretty flexible, and she is able to add patients on same day. So obviously I don’t know how it works everywhere, but every patient should be an advocate for themselves and how they want their treatment to go. So if they’re losing weight and they know they’re not supposed to, then you meet with the dietician and see what they can do differently for calorie boosting, for protein boosting, and same thing I’m assuming with physical therapy as well. You need to be an advocate for yourself. Ask for those consultations if you’re not offered them.

Andrew Schorr:
Melanie, you’d say that?

Melanie House:
Yes. I would agree. And the other thing is actually for physical therapy in most states it is a direct access option for you so you don’t often‑‑depends on what state you live in, but you don’t always have to have a doctor’s referral to be seen by a physical therapist.

That said, you’ve heard me say over and over, if I’m recommending that you see a physical therapist I want that therapist to actually be well informed of your past medical history, any of your lab values, any of your films and your imaging. So some facilities will still request PT counsel just so they have that physician connection and can get all those types of things that they need to know.

Andrew Schorr:
Right. Right. So, again, wherever you may be in the sound of my voice, if you will, all physical therapists are not equal. Melanie is an oncology physical therapist now, and she’s going to understand the risks you have in myeloma. We talked about bone, balance, the lab values, etc., maybe even complications from treatment you’ve had or medicines you’re taking. So somebody needs to see the whole picture. Same with a dietician, right?

Alexa Welch
Yes.

Andrew Schorr:
So trying to see people get the whole picture is important. You’re not going to have that at the health food store. You probably won’t have that at the pharmacy. You need to seek out somebody who’s knowledgeable about this.

So, Jim, a little bit about cancer patient consumerisms. You’ve had to really speak up for yourself. First of all, play a role in your care and speak up for yourself so you get the care you need and deserve. What you would you say to our listeners today so that when you think about diet, exercise, and going on with their life, which many people, and you’re a great example, now with myeloma can, what would you say to them so that they advocate for themselves to get consultants like these on their team?

Jim Bond:
Everybody’s different, and I believe everybody should handle their case the way they’re comfortable. Here’s what my wife and I are very comfortable with. I want to be an equal partner with my medical team. I don’t want to be the boss, and I don’t want to be bossed around. I want to have an equal vote.

And a good example of that is at about the 10‑year mark I was told here in my home town, Jim, you’re done with any treatments available. So you have to go to a hospice. You’re all done. And I said, no, I’m not going to a hospice. I said‑‑and that made the doctor leave the room, angered, but before he left I was able to say I know of a clinical trial that I had gotten word of in an out‑of‑town second opinion in those 10 years, and I said, I’m going to try to get in that clinical trial. And he told me I was wasting my time. I got in it. I was lucky enough to get in it anyhow. Had the leave town.

And I think that’s one of the great examples of being an equal partner. Okay? The doctor had certain advice, and it’s happened before in the 26 years. But I spoke up with my wife’s support, and I said, look, what if we tried it this way? What if we tried that three‑drug mix but without the steroid because I don’t really like to take steroids once I learned it caused one hip to have to get replaced. And the doc says, you know, I’m really not that keen on that, Jim, but I’ll go along with you if you want to run the risk. I said, yeah, I really do, and if it doesn’t work, if the numbers go up, we can always add the steroid later. And, you know, two months later the very popular myeloma doctor called me back and said, Jim, good call on your part. It worked fine without the steroids.

So advocate for yourself. Don’t be afraid to get educated. There’s lots out there. But if you don’t want to that’s okay too. If your way of handling it is different than that, I believe that’s‑‑your way is right for you.

One thing I’d add to the stretching and the back stuff. I’ve got severely curved spine. I’ve lost at least three inches of height, and I’m sure I’m at risk for something back there. But they don’t tell me, Jim, don’t bend or don’t do this. Well, I do stretch my hamstrings daily. That’s very important to me. And what I’ve learned to avoid is lift‑‑I don’t lift heavy objects. So how do you go along with your life? Well, you figure out ways. You know, it’s great that we have luggage that has those rollers on them. I have a briefcase that has rollers on it because I feel the pain. If I lift I’ll feel the pain the next day. So I stay away from lifting.

But, no, I just go ahead and do things. And I try to ask the doctors and nurses, tell me what I should not do, and I listen real carefully and being an equal partner I got to weigh all that, and I let them know where we’re coming out on things. But it’s fine to advocate for yourself and the longer each of you live with myeloma the more you’re going to realize, hey, there’s a lot of flexibility here. No one’s got the answer or we’d have a cure. So there is some flexibility, but you’ve got to use your good judgment and that of your medical team.

Andrew Schorr:
Great advice. So, Melanie, what do you want to leave people with on the importance of exercise wherever you are in your myeloma journey and having the right consultation so you can do what’s wise and what’s safe?

Melanie House:
The most important thing I can say is there’s no better time to start than now, and finding those things‑‑you know, think about what is it that’s important to me? What am I missing out on in my life that I want to get back to, and consult a professional to help them‑‑they will help you achieve those goals to get back to doing those things as best and as safely as possible.

Andrew Schorr:
I’d agree. You know, I have to get immunoglobulin treatment once a month for my‑‑related to my leukemia. Some other people may get that too. And yet in those times like now, in between, I travel. And, you know, so I’m going on with my life and thank god have energy and can do those steps I talked about. So I would urge you to go live your life. And your healthcare team will help you. You can do this exercise or that. And there’s Jim who’s not going to get up on the step stool, but he’s going to do that 328‑mile bike ride for the 12th time. Okay.

So, Alexa, a final comment from you about what you’d say to people about proper nutrition wherever they are in their myeloma journey. What would you say to them?

Alexa Welch
I would say listen to your body. If your body is telling you I’m hungry, eat. If your body is telling you I’m not hungry, maybe not eat but also recognizing that if that’s all day long that you’re not hungry maybe you need to set an alarm on your phone to make sure you’re eating properly. Wherever you’re at in your journey it’s important to listen to your body until your body can’t tell you what it needs anymore, and then after that then you need to start kind of taking over‑‑your mind has to take over and listen to what you need.

Maintaining your weight. And then, like I said, whenever you can eat from all the food groups, and then in the meantime when your struggling to maintain your weight or eat enough overall you want to use those supplements when necessary while talking to your medical team. And supplements I mean by the high‑calorie, high‑protein shakes, not necessarily the herbal supplements.

Andrew Schorr:
All right. Great information. And one great thing I take away from you too is should I need a transplant some day or I’m going through chemo again a chocolate milkshake is okay.

Alexa Welsh:
Yes, absolutely.

Andrew Schorr:
All right I won’t feel guilty about the ones I’ve had in the past. So, Jim, we’re going to leave it with you. So you have this bike ride coming up, the 12th one, for fund‑raising for the American Cancer Society that you wife started in Ohio, god speed to you, Jim. Are you feeling pretty good?

Jim Bond:
I am. I am. I had to shake off a bout of pneumonia a month ago, but I got the clearance to get back on my bike about three or four weeks ago. And they said, take it easy, and if you get tired, you know, get off your bike‑‑and I will‑‑and, you know, I’ve proven I can do it, but, you know. I think we have to all use our common sense on this stuff and live your life like you said. And we can do it. We can be long‑term survivors.

Andrew Schorr:
All right. Well, all the best to you. We are all riding with you, Jim Bond, okay?

Jim Bond:
Thank you.

Andrew Schorr:
All the best. Well, I want to thank Jim joining us from Cleveland getting ready for the bike ride in a couple days. Alexa Welsh joining us from the University of Iowa Hospitals in Iowa City, thank you so much, Alexa. And also Melanie House, joining us once again also from the University of Iowa Hospitals. Great information. Thank you so much.

I want to thank the Patient Empowerment Network for letting these programs flow and what a wonderful service it does to our myeloma community. And I want to thank the companies that have helped fund this program, AbbVie, Takeda and Celgene, thank you for being supporters of the myeloma community.

Remember, there’s a replay that will be available to you soon. Share it with others you know in the community. There will be video clips and sound clips with Jim that will be coming up. There will be a transcript, all coming your way. And discuss it and make sure that you connect with not only other people in the community but people like Alexa and Melanie who are very specialized, who can help you have the right diet and the right exercise for you.

In Quebec City, Canada, I’m Andrew Schorr. Thanks for joining us. Remember, knowledge can be the best medicine of all.


Please remember the opinions expressed on Patient Empowerment Network are not necessarily the views of our sponsors, contributors, partners or PEN. Our discussions are not a substitute for seeking medical advice or care from your own doctor. That’s how you’ll get care that’s most appropriate for you.

Talking To Your Family About Clinical Trial Decisions

Hearing your name and the word “cancer” in the same sentence is a world-shaking moment. After getting a cancer diagnosis, telling your family about it is another big step, one that can be fraught with as much emotion as hearing that diagnosis yourself.

Once the emotional dust has settled, talking with your family about treatment options, including clinical trials, can raise the emotional temperature again. If your family is like mine, everyone has an opinion, and is more than ready to share it. Even in families where everyone is calm about big issues like this – I question that those families exist, but I’ve heard they might – talking about clinical trials as a treatment option means being ready to field questions, and guide the conversation.

The American Cancer Society has a great set of resources for people who are assessing whether clinical trials are a good option for their treatment. I’ll use some of those as a framework for a discussion guide you can use to walk your family through your decision to explore clinical trials for your cancer:

  • Why do I want to participate in a clinical trial?
    • Your reasons can be anything from “I want to try cutting edge treatments” to “my cancer is advanced stage, and I want to throw everything but the kitchen sink at it.” The key here is to have an answer ready to this question when you discuss treatment options with your family.What are the risks?
  • What are the risks?
    • Here’s another question you’ll want to gather answers for, for yourself, before opening a conversation with your family about enrolling in a trial. Your oncology team can help you put together a risk profile for trials, and further help you target the right trials via molecular profiling of your cancer.
  • Will my insurance cover the trial?
    • Federal law requires that most insurers cover routine costs of cancer trials. However, like so much about US health insurance, the answer can still be “it depends.” There’s a great tip-sheet on the National Cancer Institute’s site that addresses this topic. You, and your family, and your oncology team, will be working together to make sure your costs are covered, either by your insurer or the trial sponsor.
  • What happens if I’m harmed by the trial – what treatment will I be entitled to?
    • Here’s another “it depends” situation. Addressing harm to trial participants is an ongoing ethics issue in the US. The key here is to review all trial enrollment documentation fully – with help from a medical ethicist or legal eagle who’s not involved with the trial, or your oncology team – and have any potential harm scenario fully spelled out, including who will address the remedy for harm, and how that remedy will be delivered.

Having solid family support is a key factor in managing cancer treatment, and in thriving as a cancer survivor. Getting your family involved in your care by talking through your options and decisions with them will give them a sense of involvement in your care, and its outcome. They can help you through the down days when side effects have you feeling punky, and celebrate the bright days with you when scans show progress against your cancer.

Curing cancer is a team sport. You, your family, and your oncologists are all on that team. Work together toward a win, which often includes unlocking the power of precision medicine via clinical trials – which can become a win for other cancer patients, too.

Cancer Goes Beyond Your Cells and Into Yourself

Your dreams of starting a family, of buying a house, of having grandchildren or of retirement in Florida may all come to a halt when your doctor says, “I’m sorry, but the test results revealed that you have cancer.”

In that brief moment, the future that you’ve dreamed up for yourself suddenly seems less attainable. Even though medical advancements have greatly improved chances of remission and the possibility of a long, healthy life, that doesn’t mean that a cancer diagnosis won’t drastically change your life. The first side effects of a cancer diagnosis that people may think about are the physical ones like hair loss, nausea and fatigue. However, some of the biggest challenges a cancer patient may experience are mental challenges.

While no one is going to respond the same way to difficult news like a cancer diagnosis, a number of cancer patients may experience several common mental health disorders. According to The National Cancer Institute, approximately 25 percent of cancer survivors experience symptoms of depression and about 45 percent experience anxiety. Some patients may even exhibit symptoms that meet the criteria of post-traumatic stress disorder (PTSD). The most concerning statistic is that cancer survivors are twice as likely to commit suicide than the general population.

The physical pain, treatments and stressors involved with a diagnosis is enough to cause a mental health disorder to develop on its own, but a person still has to deal with everyday stresses relative to relationships, finances and family issues. Some tips to boost your mental well-being during such a trying time can include:

  • Eat a well-balanced diet. Make sure you are eating enough calories because that’s will maintain your energy level. Lean proteins and colorful fruits and vegetables are nutritious choices that can help boost your strength and attitude.
  • Go outside. Going outdoors and getting fresh air can help clear your mind of negative thoughts associated with your illness.
  • Make memories. You shouldn’t let your cancer diagnosis keep you from living your life and enjoying your relationships.
  • Talk about it. Talking about your feelings can often make you feel better, it can be especially beneficial to talk to other cancer patients so you have someone to relate to and possibly offer a new perspective.
  • Grieve losses. As your illness and treatment progresses, you may face a number of obstacles like losing your independence or your ability to maintain your routine and complete simple tasks like grocery shopping or doing laundry. You should take time to grieve these personal losses before you try to move on.
  • Take your medications and supplements as directed. With your illness you may often experience chronic pain, it’s important to take your pain medication as directed so you don’t increase the risk of developing a substance use disorder. You should also discuss any changes you want to make regarding medications or supplements with your care team.
  • Get financial counseling. By discussing your extra expenses with an experienced financial counselor you can alleviate some of your anxiety.
  • Maintain an active social life. It’s important to have a strong support network because it helps you get through treatment physically and mentally.

Cancer can take a toll on your body but it can also be hard on your mind as well. If you or someone you know is struggling with a mental health or substance use disorder, recovery is possible. Call and speak with a representative at The Recovery Village to find out more about treatment options. The call is free, confidential, and there is no obligation to enroll.

5 Ways to Relax and Unwind for National Relaxation Day

National Relaxation Day is coming up on August 15th and we are celebrating this holiday by taking a step back from the fast-paced world we live in to relax and unwind. Although some stress can be helpful in pushing you to do your best in day-to-day activities, too much stress can be harmful to your mental and physical wellbeing. Below are five ways to decompress and take care of yourself on National Relaxation Day:

1. Create an at-home relaxation retreat.

With so many daily stressors, it’s important to have a space to go to at home where you can unwind and relax. Make this space fit your personality by adding your favorite items. Some items that are great for relaxation are books, coloring materials, incense, flowers, plants and more. Add extra comfort to your nook by incorporating a lounge chair or other relaxing furniture options, like these here. Make the furniture pop with a cool Moroccan rug or comfy throw pillows!

2. Go on a nature walk.

When you get outside and step away from busy urban areas or crowded streets, you allow your mind time to relax and recharge. Spending time outdoors has many positive effects on your mental health and is a great stress reliever. Recent studies found that these benefits can last for seven hours after you have experienced nature’s stress-relieving benefits, allowing you to feel happier, longer. If you find yourself spending too much time at your desk, make it a point to get out for lunch and take a walk and clear your mind with the positive distractions of nature.

3. Spend time with close friends or family who make you laugh.

More laughter in your life means less stress. Laughter triggers a release of endorphins, which have proved to create a positive state of mind and boosts optimism, self-confidence, and feelings of self-worth. Combine laughter with time spent with the people closest to you and you will feel less stressed in no time. Hosting at home activities like a DIY paint party is a fun and easy way to bond with friends and family and a great way to relax and focus in on the present to release stress.

4. Meditate or stretch.

There are many mental and physical benefits of yoga and meditation. It’s a simple stress reliever, even for beginners. Guided meditation apps make it simple to unwind and relax wherever you are with on-the-go meditation tutorials and also allow you to connect with the present world around you no matter how busy life gets.

5. Get a massage.

Massage therapy is a relaxing and stress-reducing option worth exploring when you are in need of some “me-time”. Not only can massage therapy help with muscle relaxation, but it also helps to relieve anxiety, improve sleep, and boost energy levels. So if you are looking for a relaxing activity to do on National Relaxation Day, splurge with a nice massage at your local spa!

Facts About Medicare You Didn’t Know

If you or a loved one are approaching the 65-year-old mark, it’s time to get serious about Medicare. There are a lot of things to look forward to as you get older (and wiser), and Medicare can be one of them if you take the time to understand the program and how you can benefit from it.

Unfortunately, a lot of confusing misconceptions surround Medicare. This leaves people unsure of how to make the best choice for them. Luckily, we have all the best facts you didn’t know about Medicare from a licensed HealthMarkets agent who knows the program inside and out. Keep reading to make sure you have the right coverage when you reach Medicare years.

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Medicare is Not Free Insurance

The most common misunderstanding about Medicare is that it is free insurance sponsored by the government. Like all health insurance in the United States, you have to pay premiums for Medicare Part B, Medicare Advantage, and supplemental coverage. The good news is that the government secures costs for Medicare Part B based on your income. The standard premium for Part B in 2018 is $134 assuming your income is under $85,000 as a single taxpayer or $170,000 for joint returns.

If you receive social security benefits, this can help cover the costs of Medicare premiums. For those who opt for Medicare Parts C and D or any supplemental coverage, you have more freedom in the price depending on the plan you choose.

Medicare Will Not Cover All Treatment

Once again, like most traditional health insurance, Medicare will not 100% cover all health costs. Inpatient services involve a deductible over $1300, and you’ll need to pay a fee per day for any coverage in a facility for over 60 days. With Medicare Part B, you’ll need to still pay 20% of the Medicare-approved amount for care, and this is in addition to your annual deductible.

The best way to prepare for the costs of treatment is to do your research. If you know there are certain prescription drugs you’ll need or special doctors you’d prefer to visit, consider a Medicare Part C plan which gives you more freedom in coverage.

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There is a Deadline to Sign Up

The best time to sign up for Medicare is when you turn 65. This is called the Initial Enrollment Period, and it begins 3 months before you turn 65. It continues for another 3 months after your birthday. If you miss this initial period, you’ll face deadlines if you choose to join later. You’ll also be limited to enrolling during the specific open enrollment times during the year, which could lead to limited coverage.

There are a few exceptions to this rule. First, if you already receive social security benefits, you are automatically enrolled in Medicare on your 65th birthday. Also, if you’re still working and covered by your employer, there are different options. When in doubt, speak to an advisor at your local Social Security office for the specifics of your situation.

You Might Need Supplemental Coverage

Medicare is a great program, but there’s a list of things the program does not cover. Things like long-term care, hearing aids, dental care, or even eye exams are often not covered under Medicare. This is why many seniors opt for a Medigap policy to include extra coverage for these gaps in treatment. Talk to your doctor about what you’ll likely need coverage for in the upcoming years, and prepare yourself with the right additional policy, as needed.

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You Have Access to Preventative Care

While you’ll likely need to pay for treatment and complex health services, you receive a wide array of preventative care for free. It’s always a good idea to take advantage of these services to stay on top of your health as you age.

The most comprehensive option is the annual wellness visit which includes a personalized prevention plan. Every 5 years you’ll have access to a free cardiovascular screening, and annually you can get a flu shot and routine cancer screenings. The sooner you’re able to catch a potential problem, the less expensive and complicated it will be to treat.

It’s vital you take your health seriously as you age. It’s important to understand that while Medicare covers much of your health care, it does not cover everything. You’ll also need to follow the enrollment rules to take advantage of the program’s benefits. Knowing what Medicare is and is not will help you decide on the right coverage when it matters most.

The best way to prepare for the costs of treatment is to do your research. If you know there are certain prescription drugs you’ll need or special doctors you’d prefer to visit, consider a Medicare Part C plan which gives you more freedom in coverage

How Can Patients Learn About New Myeloma Treatments?

Living Well with Multiple Myeloma

How Can Patients Learn About New Myeloma Treatments? from Patient Empowerment Network on Vimeo.

Downloadable Program Guide

Getting the right cancer care calls for sound, up-to-date information and open dialogue with your healthcare team. As a patient, how do I stay informed about new treatments in development for multiple myeloma? What are the considerations when choosing treatment that’s right for me? In this video, experts will help you better understand the latest multiple myeloma treatments for patients who are actively seeking the best care available.


Transcript:

Jack Aiello:
Hello and welcome. Thanks for joining today’s Patient Empowerment Network program. We thank AbbVie Incorporated, Celgene Incorporation and Takeda Oncology for their ongoing support.

We have a lot to cover, and we’re so happy that you joined us. My name is Jack Aiello, and I am a 23‑year survivor, myeloma survivor, this is. I learned that getting the right cancer care calls for sound, up‑to‑date information and an open dialogue with your healthcare team.

Some questions to ponder as a patient: How can I stay informed about new treatments in development for multiple myeloma? What are the considerations when choosing treatment that’s right for me?

We have already received a number of your questions today, and we’ll get to some of those answers, but first I’m really pleased to introduce our distinguished guests. Dr. Amrita Krishnan is an M.D. She’s the director of the Judy and Bernard Briskin Myeloma Center. She’s a professor of hematology and hematopoietic cell transplantation at the City of Hope. Dr. Joshua Richter is the assistant proper of medicine at the division of hematology medical oncology at the Tisch Cancer Institute of the Mount Sinai School of Medicine. And Kristen Carter is the advanced practice nurse at the University of Arkansas Myeloma Center.

Before we begin answering and addressing some of the questions, I want to make sure you are aware that this webinar is not a substitute for medical advice. You really need to refer to your medical healthcare team. And if you have questions during this webinar you can e‑mail them to myeloma@patientpower.info, and we will try to get to as many of those as possible.

I mentioned I was a 23‑year survivor. I was diagnosed in 1995, and back then treatment decisions were pretty easy because there weren’t many treatments. Either you took melphalan prednisone, a couple of pills, or you went the transplant route, which I ended up doing. I’ve learned an awful lot in 23 years. I facilitate our local Bay Area myeloma support group, and so the questions I’ve seen you already asking today and the questions we’ll be asking our doctors are the same questions that are asked in our support groups as well. So let me begin.

The first question has to do with‑‑we hear about new drugs that are out there that have recently been approved, but how do I learn about drug approvals? What’s the process for approving a new therapy, and should I attend as a patient these medical conventions I hear about like ASH or ASCO, and if not, how do I learn about these new drugs?

Dr. Krishnan:
Yeah, I think people are welcome to attend meetings such as ASCO, but you know there are 30,000 people there and so it’s a fairly overwhelming experience, and it’s very hard to drill down. And, to be frank, a lot of what gets‑‑the mix of what gets presented at most of the national meetings in regard to very, very early‑stage drugs that are only available in clinical trials. And then, yes, we do have Phase 3s that are randomized trials presented where drugs are pretty much ready to be approved or already approved and that’s confirmatory data for those drugs. So it’s a big mix.

I think, you know, for patients in terms of getting the most sort of bang for their buck is sort of doing things like you’re already doing such as the seminar you’re hosting right now I think is invaluable because it really helps drill down all the data for those meetings. And some of the other patient education forums I think are‑‑again because I think we’re happy, we’re always happy to speak at those types of events to help sort of synthesize that data in a more kind of (?) coherent, how‑can‑I‑help‑you forum.

Jack Aiello:
Any additional thoughts on that, Dr. Richter?

Dr. Richter:
Absolutely. I think that the patient support groups from different programs run by the MMRS and the IMF as well as the Leukemia and Lymphoma Society are extremely helpful. There are many of these programs, and if you go to these organizations’ websites there are frequently programs that may be near where patients are.

The other thing that I think is key as part of a patient’s and their caregiver’s myeloma journey is at some point during your treatment it’s really worthwhile to come to a center such as the people represented here. You know, University of Arkansas and City of Hope and Mount Sinai are all extremely advanced in terms of their myeloma knowledge, but there are many others across this country. And I think as patients it’s important to have a deep connection with your care team, and you can still receive all the care with your local team, but at least one point during your journey going to one of the centers like the ones on today’s panelists I think is worthwhile to find out what is on the horizon and how they can work with your local physician and nurse practitioner team to form the best plan for you.

Jack Aiello:
One thing I’ll add on to what you said about the information provided by organizations like the International Myeloma Foundation, like PEN empowerment network, like the Multiple Myeloma Research Foundation is that they have videos and webinars very quickly after ASCO or ASH meetings that will summarize what the major outcomes were at those meetings. And they are intended for patients, and they really are excellent, excellent vehicles for learning.

Kristen Carter, so I have a question targeted for nurses, I think, and that is as a patient how do I communicate or partner best with my doctor on treatment decisions? What do you find that works regarding being diagnosed with something called myeloma, which you’ve probably never heard of, hearing all of these overwhelming terms of IgG and too high a level of protein, which sounded always good to me, how do you‑‑how should patients be interfacing with both their doctors and their nurses?

Kristen Carter:
Well, all my patients have my cell phone number so they tend to call me if they have any questions, but I always tell my patients make sure you write down questions because you know as well as I, when you get in there in front of a doctor who’s got a whole list of patients for the day and they’re seeing you, they’re giving you all this information, and I always call it the deer in the headlight look from the patient because they’re brand new. Writing down questions that you think of is always very important.

Having a family member that’s right there with you, that maybe they’re thinking of things that you haven’t really thought to ask. As we’re going over side effects and treatment decisions, taking notes is very important because I always have patients, and I will have patients four or five years later, go, remind me, what is my subtype. And we go over this every time and you go, I thought we were doing a really good job of educating. So if you don’t understand something ask to repeat the information. And I always repeated back to the patients and have them repeat it back to me. That way I can see if they really understand what we’ve gone over.

And just make sure there’s an open dialogue. I always tell my patients don’t suffer in silence. If you have a side effect we need to know about it. If there’s something you don’t understand we need to know because that way we can ensure that you’re not only understanding but getting appropriate treatment, and if there’s side effects that we need to know that we can make adjustments.

Jack Aiello:
The doctors especially seem very busy and sometimes in a little bit more of a hurry than you as a patient want them to because it’s difficult for you to absorb the information that they are providing you. How do I slow them down? How do I make sure that I do understand what they are saying, Kristen?

Kristen Carter:
Having a list I think is a really good way to slow down.

Jack Aiello:
I agree.

Kristen Carter:
I have patients that come in and they’ll have their list, and I usually go in first. So I work for Dr. Van Rhee, and we have‑‑we manage, actively manage about 700 myeloma patients from all over the country. And so these patients will come in sometimes a thousand miles to see us. We don’t want them to be shortchanged on their time because they’ve travelled all the way from Arkansas, and they’ve done all the workups, and we certainly don’t want them to feel like they didn’t get the time after spending money and travel time to get to our academic center. So usually I will go in first and answer any questions that I can answer, and the list is always so important. And we’ll say, sit back down, we have the list, and what I can’t answer the doctor will answer.

And again I do provide an e‑mail or a cell phone, and I have patients that will e‑mail me a list of questions that I can turn around and answer for them if they didn’t get the information. So I think definitely having a list, having family support if it’s available to come with you, I think that does kind of slow the doctor down.

And if you don’t understand something you just stop the doctor before they leave the room. Hey, I didn’t understand that. You are your own patient advocate, and you’ve got to make sure that you speak up if there’s something you don’t understand or if there’s something you’re not sure about. Or if there’s something you’re not comfortable with in the treatment planning you need to vocalize that with your doctor or nurse.

Jack Aiello:
Dr. Krishnan or Dr. Richter, any other things that patients have done when you meet with them that you want to pass along to patients on this call?

Dr. Krishnan:
I think the one thing to be honest I’ve started writing down stuff that the patient said myself because a lot of patients start getting focused on taking notes, and they don’t want to miss anything, but then it’s very hard to absorb and take notes at the same time. So having someone with you to be your scribe is very helpful. Some doctors, you know, don’t mind patients recording them. Some are less comfortable with that. So that’s something else you can consider is asking your doctor if that’s an option.

I think the other important thing to remember is all the information we get, especially when we talk about transplant, that’s not going to be the first time you hear it, so don’t‑‑it’s not like you need to understand it all right now. This is just information gathering, and that information is going to be repeated again and again by multiple different people.

Jack Aiello:
And Dr. Richter?

Dr. Richter:
I think everything that’s been pointed out is great. I would encourage patients that if they want to record to ask first. We’ve definitely had some patients where all of a sudden their purse starts beeping and I ask what that is, and they say, oh, I’ve been recording you. I have no problem, and most of us don’t as long as we’re told about.

I think it’s also‑‑as much as the care teams set goals for each appointment it oftentimes can be a good idea for patients to set goals of what they want to get out of the appointment. So not every appointment is going to be soup to nuts, everything from the diagnosis to the whole treatment, but this appointment, what is going to be my next step with treatment and how do I deal with my toxicity. This next appointment I want to find out about transplants. So setting a couple of discrete goals I think really helps both sides to accomplish what we need to.

Jack Aiello:
Yeah, I agree. Dr. Richter, you brought up some of the resources earlier. I don’t know, when I was diagnosed in ’95, back then we weren’t sure if the internet was even going to be a success, so resources were quite limited. What do you find patients today using, and how do you‑‑you know, some doctors, patients will tell me, will say stay off the internet, don’t go there, and that’s not the right answer. So how do you advise patients today about that?

Dr. Richter:
So I think that this is something that we can’t avoid. It’s definitely a double‑edged sword. What I always encourage patients when we talk about different things is I direct them to certain sites that I know have vetted information that’s been created by the myeloma community, and it’s very accurate and realistic. So sites from the imfatmyeloma.org and the MMRF, Multiple Myeloma Research Foundation I found to be very important, and both of these organizations have handouts that we often give patients to augment things.

One of the other resources that I‑‑you know, is definitely another double‑edged sword, is clinicaltrials.gov. And I even hesitate to mention this, but I think it’s a valuable resource. I think as patients with myeloma are extremely savvy and oftentimes come in knowing data even before I’ve even heard it. It’s quite amazing. The benefit of clinicaltrials.gov is it lists all of the trials that are done in all of these institutions. It provides some overview about it, about whatever the trial is, some information as far as who may or may not be eligible, and it lists the institutions and sites that are running the trial with contact information.

So I think one of the benefits there is that people start hearing about all of these different trials on sites like myelomacrowd, LLS, MMRF, and if you’re interested in seeing if there’s an institution by you it’s a great way to drill down and find out the closest institution and a contact that may get you the right place.

Jack Aiello:
There are some good front ends for clinicaltrials.gov as well. Something called SparkCures, S‑P‑A‑R‑K cures. Something called the myeloma matrix from the IMF. Something called Smart Patients. And there are also organizations like the Leukemia and Lymphoma Society, like the IMF and MMRF who have clinical trial specialists that you can talk with, that given your situations they will help you to direct you to the right clinical trial as opposed to starting off with clinicaltrials.gov. So, I agree.

Same question for Dr. Krishnan.

Dr. Krishnan:
I think‑‑

Jack Aiello:
Resources that you have found particularly useful to provide to your patients.

Dr. Krishnan:
I think actually Dr. Richter pretty much covered them in terms of the IMF, the MMRF and what you have added to it actually. I learned some more resources too, so thank you guys.

Jack Aiello:
And same question for Kristen Carter.

Kristen Carter:
I always tell my patients to go to reliable resource sites like the IMF and the MMRF because I definitely have had patients call me later. I had a patient that was looking up fatigue in myeloma and he called me, and he goes, you didn’t tell me that I was only going to live five years, because he looked on the internet and it said five‑year survival is 48 percent at that time. He’s nine years in complete remission at this point, but I had to talk him off the ledge because he had been on the internet and he had read that, and after we had already gone over kind of the statistics and things and his individual myeloma. I said don’t worry. Don’t look at those statistics. Let’s worry about you.

So definitely, like Dr. Richter said, go to resource sites that are reliable, like you said. Leukemia and Lymphoma Society, IMF, MMRF, those are the reliable sites to go to.

Jack Aiello:
For those listening, don’t forget you can e‑mail us questions at myeloma@patientpower.info.

Doctors Krishnan and Richter, let me ask you another question. In June it’s always a big month, ASCO happens, the clinical oncology conference in Europe they have something similar, EHA. Can you give us some insights? I’ll start with Dr. Krishnan. What were some of the highlights that came out of those large cancer conferences for myeloma patients?

Dr. Krishnan:
Sure. So I had the honor of giving the ASCO highlights actually at ASCO. It was 7 a.m. Sunday morning, and surprisingly we had a full house, which tells you the interest in myeloma. So the highlights in that session were really focused around relapsed myeloma, not surprisingly. So combinations of venetoclax, the drug approved for CLL, using it combination with carfilzomib, proteasome inhibitor, so we know venetoclax work the best when it is combined with proteasome inhibitor. Most of the data we’ve had so far has been with bortezomib, so this was the first trial presenting the data with carfilzomib, and that included patients who have had prior bortezomib or who were bortezomib refractory. So that was exciting.

Jack Aiello:
Just to clarify, if patients aren’t aware, Velcade is the same thing as bortezomib.

Kristen Carter:
Thank you.

Jack Aiello:
Yep.

Kristen Carter:
You know, the caveat in that trial was that patients had to be carfilzomib naive, so, you know, we clearly don’t know when patients have had prior carfilzomib exposure if they received the same degree of response, but the response rates were very high, and patients who had a particular translocation that venetoclax targets, the (11;14) translocation, the response rate was 100 percent. Again, these are small numbers of patients, but it is interesting data both in regards to the targeted therapy as well as in the idea that we can combine venetoclax with different agents.

The other thing I would highlight was the CAR T‑cell data, which I think of huge interest to patients. This is now an expansion cohort. So the initial data we saw was in about 20 patients. Now we have data‑‑it’s still not huge numbers, 40 patients, but what we did see was that the response rates remain very high, about an 80 percent response rate.

We learned some interesting things that previous trials and the CAR‑T in this construct, the Bluebird trial, targeted BCMA. And the initial phase of the trial required that the patient have a certain amount of BCMA expression on their plasma cells. And that was actually a hard target to get. Some patients were excluded. What we learned in the expansion phase is that the percent of BCMA expression on the myeloma cells really didn’t matter in terms of response. And that as an (?) Inaudible criteria is no longer an issue moving forward.

We learned that the cell dose of T‑cells infused matters in terms of response, that there is a certain minimal threshold of T‑cells needed. And we also did learn in terms of toxicity signals that we do see cytokine release. Fortunately in the majority of patients it’s been mild. I would think those are the two biggest highlights.

And the other one I wanted to briefly touch upon was the study looking at weekly carfilzomib. So it looked at weekly compared to a traditional carfilzomib schedule, and showed that a weekly higher dose was tolerated well. Interestingly, we actually saw a better progression‑free survival in the patients receiving weekly compared to the twice a week. I haven’t drilled down enough yet in that trial to know is that because of toxicity, or what are the reasons, but it just shows us that you can give weekly higher dose carfilzomib.

Jack Aiello:
And, Dr. Richter, do you want to follow‑up on any of those?

Dr. Richter:
So those were absolutely the big highlights. Everyone is very excited about the potential for CAR‑Ts and myeloma.

The other studies that I would high rights that came out of EHA and ASCO this year focused on combination therapies. It is still a goal if we can in patients to put them on multi‑drug combinations using multiple different mechanisms of action to treat the different types of subclones within the disease. So there has been data recently on three‑ and four‑drug combinations and how they may benefit patients.

So the combination of elotuzumab, pomalidomide and dexamethasone, the data was presented at EHA and was very encouraging as a really great option for patients with relapsed myeloma as well as that same combination, elotuzumab, pomalidomide and dexamethasone with bortezomib added to that. A four‑drug combination, but again in the right population this can be both tolerated and efficacious, as well as the three‑drug combination of Velcade, pomalidomide and dexamethasone.

And I know a lot of this may seem like, you know, they used to call it word salad where you’re just mixing up different letters and combination and it doesn’t all make sense, but that’s part of what our collective job here is to look at all the different options and all the data and drill that on what the exact correct regimen is for an individual patient. For some patients four or three drugs may be too many and two drugs may be appropriate, but in the right patients we may need to combine three or even four drugs to get the response needed.

Jack Aiello:
Can you say a little bit more about what makes the right patient for the right drug combination?

Dr. Richter:
So I think that’s‑‑there’s three different factors. There is treatment factors, disease factors and host factors that we take into account.

Treatment factors means have we given a previous line of therapy and did it cause toxicity. So if we’ve given drug A and the patient had horrible neuropathy I would not utilize that drug and may think twice about drugs that are similar. Host factors are things such as the patient’s age, their frailty, other co‑morbidities that they have that may affect the choice of drugs that we give. And disease factors are crucial. How quickly is the disease progressing? Is it taking other forms such as forming tumors such as plasma cytomas? Is it involving other areas of the body?

And as Dr. Krishnan pointed out, we’re starting to understand that certain drugs may have better efficacy in certain subgroups of patients. So for example venetoclax in patients with that (11;14) translocation or something called Bcl‑2 overexpression, we may utilize a drug like that in a patient earlier rather than later because that‑‑realistically, they’ll have a higher response rate.

Jack Aiello:
Thank you. We have a question from a caller named Mona who is a myeloma patient and did an allotransplant. Kristen, I’m going to ask you this question. She did an allotransplant in 2012. She’s been on Revlimid maintenance now for six years, and she’s a university instructor and leads a very active working life. Her question, though, has to do with does she take‑‑and this will be actually for all of you‑‑do I take‑‑in fact, let me ask this of Dr. Krishnan. Do I take Revlimid, continue to take Revlimid indefinitely, or is there a time when I can actually stop taking it?

Dr. Krishnan:
So the allo setting is a little bit different and because we really have no large trials. The only trial we have using‑‑two trials using Revlimid after allotransplant, one in the US, one in Europe, it was actually quite a challenge. A lot of patients developed graft‑versus‑host disease, so really only a minority of patients were able to tolerate it, and to say on it for as long as she has is actually quite impressive. So, honestly, in her case we don’t have any clear recommendation.

In the autologous setting we have differences right now. We do have‑‑

Jack Aiello:
I misspoke. Hers was an autologous transplant. I’m sorry.

Dr. Krishnan:
Okay. In the autologous setting we have the US approach which was based on the CALGB CTN trial, which randomized patients after transplants or observation or to lenalidomide indefinitely unless they developed toxicity or the myeloma progressed.

The French had a trial that actually started out with the same idea, indefinite lenalidomide. They ended up abrogating it because of their concerns for toxicity. The patients in that study had about 18 months of lenalidomide.

And then lastly there’s a big trial that’s going on right now that the IFM Dana‑Farber trial that in this French part patient after transplant might get lenalidomide only for a year. The US part patients get lenalidomide indefinitely, so it tells you that, you know, we can’t really‑‑don’t know and we can’t agree.

The last point I would say is a trial, which you’re very familiar with, Jack‑‑you’ve been hugely instrumental in getting it off the ground, is trying to answer that very question which is (?) Inaudible transplant get randomized to lenalidomide or lenalidomide and daratumumab, and then after two years if they’re MRD negative, so really looking very, very deeply at their myeloma, patients will have a second randomization, so a group of patients both stop therapy, so that will answer the question can you stop therapy if you’ve had a very, very good response.

Jack Aiello:
Kristen, I know you have lots of patients that come from really all over the world to the University of Arkansas there. There is a patient named Renee who is South African who says, I don’t have access to many of the newer myeloma medicines, and I wonder if there are assistance programs out there to remedy this. Are you familiar with being able to help someone like that?

Kristen Carter:
We have actually had several patients that this is a big issue with. I have a guy that is from Trinidad and he can’t get a lot of the medications there. And I have someone from the Bahamas saying they have a lifetime cap on their insurance, and then that becomes a big problem especially assess to medications in other countries. We actually have had people fly in to get medications and fly out, and we were actually able to get it through patient assistance here in the United States, but not everybody has the means to do that.

Jack Aiello:
Yeah.

Kristen Carter:
And so‑‑I mean, it is a big issue. I mean, even to try to get Revlimid in some areas or Velcade in some areas, it’s just not on their protocol in that country. And even here in the US dealing with the VA and certain places like that where different combinations have to be approved before they can get that. So that’s always a challenge, is access to medication and different regimens that may not be approved overseas, Canada, the Bahamas. European countries still are not utilizing the medications. So we’re very fortunate to live in the United States and have the access to the different combinations that we have here.

Jack Aiello:
Do any of you hear patients who have those problems trying to access generics, and do you have any feeling for whether that’s a good idea or not?

Dr. Richter:
I think it’s a difficult thing to ask because unfortunately there are well known disparities in terms of access to care within this country and in other countries, and a lot of the patient advocacy groups are trying to do what they can to help a lot of these patients. In terms of what patients ought to do if they can get access, I think it depends on the source. There’s obviously some legitimate channels that people can utilize to try to get access to drugs that may not be readily available.

Obviously, in the day and age we’re in I think there are some probably shadier ways people can get drugs, and it will be unclear how real they are. So I think that if you have access to any of these things it is probably best to bring them to a pharmacist to evaluate to ensure that if you are able to get these drugs from some other means other than the purely legitimate routes that you are taking the correct things and nothing that’s dangerous.

Jack Aiello:
There were a couple of maintenance questions that came in, and I’ll try to summarize them. David asked, rather than starting maintenance at 10 milligrams or 10 milligrams every other day of Revlimid, why not start at a lower dose, you know, two and a half or five milligrams or no treatment. And maybe you do that when you look at someone’s age and quality of life. And another person, Greg, just is flat‑out asking what is the best maintenance therapy to remain cancer‑free.

So, Dr. Krishnan, can you talk about how do you recommend maintenance treatment?

Dr. Krishnan:
Some of it is (?) imperious, but we do know that there is a dose response with Revlimid because we do see patients who, for example, were on maintenance at a lower dose and their M spike starts trending up, we increase the dose and we do see a gap but sometimes patients respond. So the dose that was picked was sort of a balance of trying to get a fairly active dose but understanding toxicity.

In newly diagnosed patients we use 25 milligrams, but in the maintenance setting we use 10 to 15 milligrams understanding there’s more hematologic toxicity after stem cell transplant so it would be hard for patients to stay on 25 milligrams for any length of time. So I think we’ve tried to balance that in our sort of initial recommendations for the starting doses of maintenance therapy.

In regards to the question what’s the best maintenance, I mean, that’s a great question and the answers still remain unknown. We just saw a press release from Takeda about ixazomib. We don’t have any details yet, but that it’s the oral proteasome inhibitor compared to placebo after transplant improved progression‑free survival. Again, don’t know anything yet about those patients within a certain subgroup, how big a benefit was it. So we’ll all waiting for the ASH meeting this year to hear that. But, again, it speaks to the question what is the best maintenance, and we’ll continue as we get new drugs study them both in relapsed, up front and in maintenance.

Jack Aiello:
Dr. Richter, as patients, though, get older and look at that quality‑of‑life issue, how do you adjust maintenance dosages, or do you decide maybe they shouldn’t go on maintenance?

Dr. Richter:
I go back to what Dr. Krishnan said which is true, which is the dose that was picked and was studied in CALGB study showed a progression‑free and overall survival, so that is our base from where to start from, but ultimately we then have to individualize from there. There are definitely patients that maintenance therapy absolutely benefits. There’s patients that unfortunately in order to provide a benefit from maintenance they have own toward toxicity, either hematologic with lowering of blood counts or other toxicities.

And on the flip side there are some patients that we feel may have higher risk disease where giving one or two drugs may not be the ideal maintenance, but there are some ongoing clinical studies looking at three drugs as a maintenance approach. And although this may seem quite extreme to some for those subset of myeloma patients with such high risk disease that we need to start enrolling in these trials to look at ways to offset their risk of having early recurrence. So I think we have what is the standard.

As Dr. Krishnan pointed out, there is the press release which we haven’t seen the hard data from yet with ixazomib, but this is going to be changing over time, and it needs to be individualized to the actual patient, their side effects, their type of disease along with the most up‑to‑date data.

Jack Aiello:
Kristen, a person named Donna from Nova Scotia asked, and I’m sure you are asked in a lot. And that is, I have severe neuropathy from Velcade. What treatments are there for severe neuropathy? And anyone can chime in, but I’m guessing you get this question.

Kristen Carter:
Yeah, that’s actually one of the most frequent questions I get. Especially when starting maintenance because we actually do do triple therapy maintenance utilizing Velcade. And the good thing is now that we have subcutaneous Velcade definitely the neuropathy is a lot less so we don’t have to worry about as much. I always tell my patients that we need to know about neuropathy before it gets grade 3. If you have grade 3 neuropathy I did not do my job.

We need to dose modify early. We need to start drugs like gabapentin or Lyrica. I’ve used Cymbalta. There’s several different ways to treat peripheral neuropathy, but the main big thing is dose modification and dose interruption if you have a grade 2 or more neuropathy. That’s when you start to need to think about dose modification. We do not want it to get to painful neuropathy and continue treatment.

And then you look at the clinical research on the newer drugs like Kyprolis or ixazomib that does have less‑‑less neuropathy associated with those drugs, so I’ve definitely used Kyprolis when someone had neuropathy with Velcade with not having further neuropathic symptoms with utilizing that drug. There’s lots of other options out there that does not have the associated neuropathy symptoms.

But the big takeaway would be let’s not let it get to grade 3 before we’re talking about neuropathy. So actually every visit, we talk about neuropathy at every visit. I ask that question at every visit, so preemptively educating the patient that these are the symptoms that you may develop, and also letting the patient know, hey, let me know if you’re having symptoms.

Jack Aiello:
Doctors Krishnan and Richter, any added insights in terms of how to fix bad neuropathy? And, by the way, if you do have any of that will definitely fix it, I will be in your office tomorrow.

Dr. Krishnan:
Absolutely.

Dr. Richter:
I think there’s a few‑‑the number one thing that Kristen brought up, and this is literally the biggest issue, is open dialogue with your care team. That is‑‑she is 100 percent correct. It is a lot easier to prevent than to treat. Unfortunately, the drugs that we utilize do not work in everyone. The other modalities that could be tried, I’ve had some success with Cymbalta, which she mentioned, also some of the tricyclic antidepressants drugs, like amitriptyline, nortriptyline may offer some help there.

But, again, this is really all about trying to prevent it and picking the right drugs and the right dosage. There are some newer‑‑we’re starting to work on some clinical trials here for some novel approaches, but nothing as a cure‑all just yet.

Jack Aiello:
Dr. Krishnan, anything else?

Dr. Krishnan:
No, I think we’ve covered every single drug that we’ve tried for neuropathy.

Jack Aiello:
I’ve had a few patients tell me that maybe acupuncture has helped them, cocoa butter has helped them, acupressure, acupuncture, as I said. But as you say there’s nothing for everyone, and it can be really debilitating if it gets too bad.

Dr. Richter:
There’s one other‑‑and again, neuropathy can come in a variety of ways. There’s a numbness but there’s also a pain. For people who have extreme pain there are compounding pharmacies that can a make certain combinations of lidocaine and some other medications that may help numb it. The other one‑‑and I know this sounds very extreme and not all places do this‑‑there are various studies looking at compounds of ketamine. And I know this sounds crazy, ketamine, which is also known as Special K, which is used in a variety of other nonclinical settings. There’s been some conflicting studies looking at the use of ketamine in peripheral sensory neuropathy, and I’ve had a few success stories in patients with severely refractory peripheral neuropathy working together with our pain management colleagues to compound the right dosage, but it can be tricky to use.

Jack Aiello:
Okay. Want to thank people who have already sent in questions, and for those you just joining questions can be sent in to myeloma@patientpower.info.

I thought that one of the questions came in from an individual named Jack‑‑that wasn’t me, but he asked a really good question. And he said essentially I don’t understand why newly diagnosed patients are often given the standard myeloma treatment regimen called RVD, Revlimid, Velcade and dex, from the beginning. Would it not be equally or better to maybe start treatment at lower dosages to see what the initial response is and then titrate up to the higher doses if needed? And perhaps if they were just as effective this would reduce side effects and toxicity.

I know, Dr. Richter, this question interested you as well, so how do you answer that?

Dr. Richter:
Again, it’s a patient‑by‑patient basis, and although RVD is an extremely common initial therapy if you look at the MM connect data about most utilized therapies in up front patients it includes RVD, Velcade, Cytoxan, dexamethasone but it also includes a fair amount of Velcade‑dexamethasone alone or Revlimid‑dexamethasone alone in up‑front therapy.

The rationale to give more drugs up front comes from our knowledge of the biology of myeloma and that we recognize that myeloma is difficult to kill in a human being, that plasma cells are very robust, and we do have evidence that the deeper responses that we can achieve, so getting patients to a partial remission, very good partial remission and down to the levels of complete remission with MRD or minimal residual disease negativity seemed to impact overall outcome, and patients who achieve those deeper remissions tend to do better.

So that’s the reason why we tend to start these multi‑drug combinations at fair doses is to attempt to achieve those deep levels of remission because those tend to be the patients that have better outcomes. Now, this is not wholly true. There are patients who can get two drugs and do extremely well, but as we have just the data that’s out there to go on, this leads us to choose this approach.

Jack Aiello:
Yeah. Do you agree, Dr. Krishnan, I presume?

Dr. Krishnan:
I do. I do want to make one comment that it’s not that every patient gets RVD, but, I mean, frankly, our interest is not taking away drug it’s in adding more drugs because‑‑and we get high response rates and we want to actually‑‑we think that the toxicity profile is manageable for the gain you get from deepening it responses.

Jack Aiello:
Dr. Krishnan, I thought Greg asked a million‑dollar question here. After achieving remission and completing maintenance what are your best resources for options to maintain the remission and avoid relapse?

Dr. Krishnan:
I think a lot of that depends on what treatment you had originally, as Dr. Richter said, the biology of your myeloma. Some people have a more aggressive cytogenetic profile, for example, so we tend to treat them more aggressively and continuously. I think just, again, that’s a very individualized to the patient, but think the one take‑home message I would say is that myeloma is different than a lot of other cancers in the sense that we really don’t stop treating, that we continue therapy, and this concept of maintenance is very sort of germane to myeloma.

And, frankly, other diseases are starting to adopt it more now. We see in the lymphoma space more in the concept of maintenance now. And you could argue in breast cancer with hormonal therapy patients are on a drug for extended periods of time. Those are eventually stopped, so we hope in myeloma we get to be stopped, too.

Jack Aiello:
Kristen, I have had people ask me since I’ve been diagnosed a long time ago, what do I do nutrition‑wise? And I don’t ever have any good answers for that, and I’m sure you’re asked that question. Do you have any good answers for nutrition to help benefit myeloma patients?

Kristen Carter:
I tend to be‑‑I like to look at the whole body. I’m definitely a person that adopts a very clean diet and exercise program myself personally, and so I think that nutrition makes a huge difference just in everyday life. Now, do we recommend an alkaline diet and a ketogenic‑based diet? Absolutely not. If you want to do that, we’re welcome to let you do whatever you feel comfortable, but I do tell patients that it’s very important to continue to eat good, nutritious‑good nutritious diet.

And also exercise. I think it makes a huge difference in fatigue and overall well‑being to get good exercise and have just a well-balanced diet. But we still do not adopt, you know, specialized diets, sugar‑buster diets for myeloma. I have actually had patients that we’ve gotten after they’ve done two years of alternative therapy, and if you want to complement your treatment with alternative therapy we say as long as it doesn’t interfere with the type of therapy that we’re prescribing, go for it.

But as far as doing alternative diets and therapy, we still have not adopted that or seen a huge benefit to the patients. So I just tell my patients to live your life, have a good nutrition and exercise program.

Jack Aiello:
Yeah, I agree. Well, I think Lonnie asked a question that’s been asked for 15 years at least, and that is whether to get a stem cell transplant or not. And specifically how does one make a sound decision about that? I’ll start with Dr. Richter.

Dr. Richter:
I appreciate starting with me, although for what it’s worth Dr. Krishnan is actually director of transplantation services. But I think this is a personal decision. As drugs have gotten better and better it is definitely come into question about the role of transplant. Many years ago when the only options we had were steroids, melphalan as pills and a combination called VAD I think it was very clear that autologous stem cell transplant was very much the way to go.

As novel therapies have come outed it continues to come in question. That being said, the data to date has shown that for those patients who are eligible to undergo autologous stem cell transplant there continues to be a benefit for patients who are able to undergo that. Now, what that means is fairly vague, and it differs from country to country. In the United States there’s no absolute age limit, but physiologic age comes into play as much if not more so than chronologic age, so I still think that it’s an important part of therapy.

This will‑‑you know, I think we always ask as we get new therapies is transplant going to go away, and what I always say there’s two reasons why I think transplant is going to be here to stay. Number one is patient selection. There are certain patients that we can give a stem cell transplant who will remain in remission for many years if not longer, so it still represents the best therapy to get those really long‑term remissions. And as we get better data behind us we’ll know, be able to select out who is the correct person to transplant who is really going to get that great benefit.

And one of the things that’s evolving in terms of new technologies is post‑transplant therapy or give‑back. So the question is in the next five to ten years are we going to start to see things like post‑autotransplant (?) carts or post‑transplant placental‑derived national killer cells or some other give‑back post transplant to augment their therapy so that once we get that deep remission with a transplant we can give another immune‑based therapy to push them even farther and achieve an extremely long remission if not potential cure. But I absolutely would love to hear what Dr. Krishnan has to say about the subject.

Jack Aiello:
I do too, but that’s why I asked you first. Dr. Krishnan, you are director of transplantation at City of Hope, so how do you answer this lady’s question?

Dr. Krishnan:
Well, first of all, thank you. You both gave me a promotion. I’m actually not director of transplantation. I’m director of the myeloma program. Still, I guess a couple points. Number one is if you look at the CIB in terms of the (?) international bone marrow transplant registry really only 20 to 30 percent of patients in the United States who are eligible for transplant are referred for transplant, so it’s very underutilized. As Dr. Richter said, we now have trials using modern drugs comparing them to transplant, and transplant still seems to offer us longer remissions.

And then the third point is transplant has become safer so we know in that comparative trials, again, obviously patients selection. You’re going to stack the odds in your favor if you’re going to offer a therapy that you want a good outcome, that the risks now are equivalent to the initial induction RVD therapies for patients getting an autologous transplant. And so much so I can tell you at least at our center we’ve moved our transplant to the outpatient setting.

So when we started patients were in isolation, boy in the bubble kind of thing, and now we recognize most of the infections patients get are from their own body not from everyone bringing it in to them. There’s a lot to be said for, as Kristen said, exercise, walking, diet and trying to maintain some normalcy, so having all those things when you’re not in the hospital are much easier. So all those things tied together hopefully have made transplant much or accessible, safer and sort of less frightening to patients, too.

Jack Aiello:
And, Kristen, you probably get patients there at Arkansas asking why are you suggesting two transplant instead of you just a single transplant? How do you answer?

Kristen Carter:
What’s funny is you ask three transplanters what we think about transplant because we’re all for transplant and we’ve done, you know almost 12,000 transplants for myeloma. And we do do tandem transplants, and they have seen, like Dr. Richter said, the deeper the remission, we know the longer the progression‑free survival, and there have been clinical trials that show that tandem does lead to, I think, it’s a 15‑month progression‑free survival advantage.

However, tandem transplant is not for everyone for sure. I mean, we definitely have people that are in their 70s, late 70s, are we going to do a tandem transplant on that person? Probably not. If you have a 40‑year‑old then that’s where you’re thinking of tandem transplant and more aggressive therapies. And I will tell you we’re seeing patients younger and younger. The 30‑year‑olds that I see, come into our clinic it’s just heartbreaking. We usually think of myeloma in patients that are in 60s and 70s, and, you know, if you give those patients a 10‑year survival maybe that’s a success. But if you have a 40‑year or even a 30‑year‑old, 10 years is not a success.

So we’re trying to do what we can up front to give these patients the best long‑term progression‑free survival available. Yes, as we sit here today transplant today‑‑it may change tomorrow with newer therapies‑‑has shown the best benefit for these long‑term progression‑free survivals.

Jack Aiello:
We have patients in our support group and I know across the nation saying, well, should I consider trying to get one of these CAR‑T therapies instead of doing a transplant? Dr. Krishnan, let me ask you the question. Do you think one day that maybe CAR‑T might replace transplants? Or how do you answer patients that have that question?

Dr. Krishnan:
I don’t‑‑well, number one, I think that’s 15 steps forward. If you look at the progression‑free survival just from the Bluebird trial it was‑‑it’s not four years, which is what‑‑or three years even what you’d see. Again those are relapsed patients.

Jack Aiello:
Heavily pretreated, yeah.

Dr. Krishnan:
Exactly. We do know too is you first have to reduce the amount of myeloma in the body for CAR‑T to work well and also to reduce the toxicity of CAR‑T. So you can’t just take someone with newly diagnosed myeloma and give them CAR‑T cells.

What we are looking at is the trial that was going to open through the (?) VMD CPN is patients that have very, very high risk myeloma doing CAR‑T cells after an autologous transplant. So really in a way you’re trying to get the best of both worlds.

Jack Aiello:
And, Dr. Richter, you would probably agree with that?

Dr. Richter:
Absolutely. At the moment although CAR‑T technology is extremely exciting it is not FDA‑approved and as it’s on clinical trials spots are unfortunately very limited, so at the moment the standard of care is still to move towards an autologous transplant. Having an autologous transplant does not make you ineligible for many of the CAR‑T protocols.

The only type of transplant that limits options for CAR‑T is allogeneic stem cell transplant, makes you ineligible for many but not all of the CAR‑T protocols. But, again, the decision of which way to go now is going to change in the future and this is a conversation you should definitely have with your care team.

Jack Aiello:
Thank you. We need to start wrapping up, although I have a number of other questions I could ask you. And I do want to ask one question that was asked, and that was from Heather who asked the question about how‑‑can you discuss or how are any of the new treatments being used to treat amyloidosis that’s caused by myeloma? Dr. Krishnan, can you respond to that?

Dr. Krishnan:
I think we need to make a distinction because amyloidosis, what we call secondary amyloid that’s associated with myeloma and then there’s primary amyloidosis which tends to be much more of a different clinical symptoms, and those patients, quite frankly, often are sicker than myeloma patients because amyloid can involve the heart, the GI tract, kidneys and a lot of neuropathy. And certainly the heart, when amyloid involves the heart especially that can make patients quite fragile.

And so the drugs we use, we do use the myeloma drugs because amyloid is still a disorder from plasma cells, but we tend to use them at different doses. And, again, we monitor for different toxicities in that population. Having said that, you know, we’re very excited about daratumumab now and activity in amyloidosis. Again that’s primary amyloidosis.

But, as I say, amyloid is such a different bird for us. We have a director of amyloid here. It’s really grown into its own special niche. They have their own society too. I mean, we co‑mix, but again it tells you how unique that disease is.

Jack Aiello:
And, Dr. Richter, how do you treat secondary amyloid?

Dr. Richter:
Unfortunately, so far the drugs that we have for myeloma that we use in amyloidosis, they control the core problem which is the production of the light chains that tends to lead to amyloid but doesn’t get rid of the amyloid fibrils themselves. So we have patients that enter a hematologic remission where we get rid of the bad protein, but they still have significant organ dysfunction, either cardiac or renal most commonly from amyloidosis.

There are several drugs in clinical trials that are looking at targeting the amyloid fibrils themselves, and although it’s still somewhat controversial there’s some interesting data about doxycycline, which is an antibiotic a lot of us have used in the clinic, that there may be a component that doxycycline may destabilize some of the amyloid fibrils. Again, the data is still evolving, and we don’t know yet, unfortunately, how to treat many of these patients. Amyloid is one of those diseases which is often diagnosed after patients have had it for a very long time, and we often have a lot of ground to make up at diagnosis.

Jack Aiello:
Can I ask each of you to make closing remarks? The objective of this webinar was to provide insights to myeloma patients in terms of how to best move forward in getting the right treatment and cancer care for their myeloma. Dr. Krishnan?

Dr. Krishnan:
I guess I would bring it full cycle to echo what Dr. Richter said at the beginning. Myeloma is still is rare disease compared to breast cancer, lung cancer, so most community doctors don’t see a lot of myeloma. And we know from actually published articles now that the more myeloma patients you see the better the outcomes are for centers.

So we don’t expect everyone to travel to LA or the Bay Area. So it could be 20 miles, but it could take two hours, so we don’t have that expectation you’re going to come in every week to see a myeloma center, but at least have that conversation early in the course of diagnosis and at various stages along the way, if the myeloma comes back, for example. Again, good to have it at points where you’re thinking of changing therapy.

Jack Aiello:
Getting second opinions from myeloma experts like yourself to at least be part of your medical team and work with your community doctor is awfully important in my opinion.

Kristen, can you offer your summary comments?

Kristen Carter:
I think both Dr. Krishnan and Dr. Richter are absolutely correct. Get to an academic center I think is important if you have the means. Also be your own patient advocate. I do think that the more well informed you are the better. And also the big thing that I see a lot is we will see these new trials come out, and, oh, this is so exciting, but we don’t have long‑term follow‑up for these new treatments, and we’re going to try the tried and true with the long‑term follow‑up success in the treatment available. So getting to an academic center, getting the treatment that they recommend and being your own patient advocate I think are the biggest takeaways to our patients.

Jack Aiello:
And, Dr. Richter, you have about 30 seconds.

Dr. Richter:
So, to me, the biggest thing is don’t be quiet. I see a lot of patients being stoic. You don’t get extra points for being in pain, not sleeping at night, getting neuropathy. Our entire care team, our whole purpose is to help in any way that we can, and if we don’t know some of the symptoms are going on we can’t treat them, so I would rather hear 10 symptoms that are not worrisome signs than not hear one that is.

So please encourage you to reach out to your nurses, PA s, doctors, the whole care team especially when you’re in the visits. It’s all about you. Please speak up if you have any problems at all because we have a lot of ways to deal with them.

Jack Aiello:
Thank you all for the insights you provided for myeloma patients. My name is Jack Aiello, and I appreciate all that you do.


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