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.

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 we 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.

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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!

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