PEN Blog Archives

How Can Breast Cancer Genetic Testing Empower Women?

In this podcast, Dr. Stephanie Valente explains how breast cancer genetic testing results can help women learn about their breast cancer risk and guide prognosis and treatment choices. 

About the Guest:

Dr. Stephanie Valente is the Director of the Breast Surgery Fellowship Program at Cleveland Clinic. More about this expert: https://my.clevelandclinic.org/staff/16420-stephanie-valente.

See More from INSIST! Breast Cancer

Sujata Dutta: Sharing the Journey

Check out Part I of Sujata’s story: Normalizing the Word Cancer


 

Sujata Dutta, Part 2 Sharing the Journey from Patient Empowerment Network on Vimeo.

Empowered multiple myeloma patient, Sujata Dutta, shares an overview of her treatment from a stem-cell transplant to a clinical trial, and how she chooses to see the positives in her journey.


Transcript:

So once I was diagnosed with multiple myeloma and I was actually informed about the standard of care. So standard of care with multiple myeloma today is typically a couple of cycles of chemo. So I had about five or six cycles of chemo to bring the M-spike to as low as you can, and then that’s followed with like a stem-cell transplant (an SCT) or bone marrow transplant – both are the same. In my case, it was an autologous stem-cell transplant which meant that I use my own stem cells which were extracted and stored and then given back to me.

 So then post-transplant, if the counts look good then you go into a maintenance routine. So I didn’t have succession of chemo before the stem-cell transplant. I had my stem-cell transplant at Mayo in Rochester, Minnesota and unfortunately, in my case, we did not achieve the results that we were expecting so my disease actually did actually not come down as much as we would have hoped. 

So, I had to go back on a chemo routine and I’m on that one right now. However, I actually am part of a clinical trial. I signed up to be part of a clinical trial that’s looking for newer ways of treatment which are shortening the time of treatment and also with the goal of improving the standard of you know care or like better lifestyle for the patients and like obviously longer life.

So, I’m part of a clinical trial that’s combining Revlimid and Daratumumab, which is like usually you would have an 8-hour hospital visit for the chemo, but in this I am just getting a subcutaneous injection in my belly. It’s a 5-minute injection so that’s not pleasant, but 8 hours compared to 5 minutes, it’s great.

So yes, I am back on chemo just so that we can bring the disease under control. But typically with standard of care with multiple myeloma is like couple cycles of chemo followed by a transplant. If you are eligible for one, and if you are ready for one, and then followed by maintenance. So that’s typically what happens with multiple myeloma.

But there are loads of other treatments that are coming up and researches that are happening, clinical trials that are happening, I would highly encourage it if you come across a clinical trial that interests you, speak to your doctors and see what they say. And if you’re eligible, it would be a great thing to do. I personally wanted to get involved in some kind of volunteering activity. I know that folks before me have done so much and I’m benefiting from that, I wanted to give back as well so I actually signed up for the trial. But other than that, that’s pretty much what the standard of care is today for multiple myeloma or what I know of.

I think one of the biggest takeaways from my cancer journey, I would say is learning to be appreciative of what I have. Learning the value of what I have, not that I did not know that, but I think this life changing kind of event that has happened has taught me even more of the value. For myself, what’s my worth? What’s the worth of somebody else in my life? What’s the worth of things around me in my life? And it has, so my journey has actually helped me understand these things and be appreciative of what I have. 

My husband he’s been my primary caregiver throughout this journey and we have actually like been on the journey together, so it has been an amazing journey I would say. 

We have discovered like a new relationship between us, like going for chemo, going to Mayo for 6 weeks, and we stay together and you know how much I appreciate what he has had to go through because of me. Like looking at me not being able to walk or not even being able to talk or even drink water because of the amounts of … that I had and supporting me through all of that. I really appreciated it. I appreciated my boys, like I have a 7th and a 6th grader, and for them to understand what I was going through and for them to be able to accept in the form that I was, has been great.

I have friends, I have family who have supported me throughout this so I really appreciate them being with me, being around me, supporting me, rooting for me, praying. There’s one thing that I tell everybody like you know there have been so many people known and unknown that have like you know helped me or prayed for me or rooted for me that I have no choice but to get better.

So you know I really appreciate what I have and I think I also appreciate the value of what I have, and like not think about what I don’t have. I am a believer that divine intervention happens, you don’t know why but everything has a reason and I think whatever happens, happens for the best. For even cancer, I think happens for the best.

For me to understand like what all I had and like how grateful I was for everything that I had. For me to go back to a hobby that I had almost forgotten. I paint, I used to paint and I’d almost given up on that through my journey. I was like I need to go back and do something else and I went back to painting. So like so many good things have come out of this, so you know I’m really grateful for whatever has happened and I’m quite positive for the future so I am looking forward to what’s in store for the future and I’m going to be positive keeping my fingers crossed. That’s my story for you.

Sujata Dutta: Normalizing the Word Cancer

Sujata Dutta, Part 1: Normalizing the Word Cancer from Patient Empowerment Network on Vimeo.

Empowered myeloma patient, Sujata Dutta, shares her diagnosis story and shares her top advice for newly diagnosed myeloma patients.


Transcript

Hi, my name is Sujata Dutta and I was diagnosed with multiple myeloma in December of 2019. This is my story. I’m hoping that I can encourage other people to educate themselves about the disease, to be okay with the disease, and to learn a little bit from my story – if it is possible.

My journey started in December of 2019. It started off as a regular day just after Thanksgiving. Me and my husband we were at work, we had a typical normal day at work, and we got back home, and then we had to run some errands. So, we went off.

I had a very severe tummy ache. It was so bad that I had to just hold on to the cart that I had in the store and just stand in the middle of the aisle because I was just not able to move with the pain. As I just told my husband, I don’t think I am feeling well, let’s go back home. And when I got back home, I started feeling very sick and I threw up through the night like I was just throwing up.

So I didn’t go to work the next day, and I just thought maybe it’s a tummy bug like I’ve got an upset tummy, I should just rest it up. So, I didn’t go to work. I didn’t feel sick again, but I started to have diarrhea and I was like well I  just have to wait it out until the bug goes away. Then, I had this tummy ache, which was kind of like coming and going and I didn’t know what it was, and I was just like maybe it’s the bug and I just didn’t think much about it. I kind of put up with it for a while. 

After a few days, I was just like it’s not going and my tummy still hurts on one side, so I don’t know what’s happening. And that’s how I went to urgent care. And then, they took x-rays and labs. And they said something is really not looking nice, but you have a massive swelling in your belly and your labs are not looking good. Long story short, it looks like you have an infection and inflammation in your abdomen. You need to go to emergency.

And this was my first time in a hospital. I had moved to the US only six years ago. Before that, i was in the UK. So, I had no clue how things worked and we were just following suit. My husband was with me, so I said well they’re asking me to go to emergency because they said that I need some imaging done. We were really casual about it, and we were like well ok, fine let’s go and see what happens. We just sat around in emergency for so long, and it was time to pick up my boys. So I told my husband you can go and I’ll Uber once my scan is done.

However once my scan was done, after waiting for many hours, the doctor came in and said well you have something called an intussusception. I had no idea what that was. I can pronounce it now, but at the time I was like what? And so basically what had happened was my intestines had got tucked into each other and created a block at several points, and that had to be operated. So I had to stay back. This is my first time in the hospital, I don’t even know what happens or whatever.

So anyways I stayed back, had surgery. […] inches of my big intestine had to be taken away because it was damaged. And then started the research, why did this happen to me? And we did lots of tests once I was recovering from surgery in the hospital. One of them was a bone marrow biopsy, the other was another MRI. And finally, a week after the surgery, I was visited by the oncologist and she said, “Well, you have something called multiple myeloma.” And I was like, What’s that? She was like, “It’s a cancer of the bone marrow.” And I was like “Oh, ok.” I had no clue how to even react to that, you know? And so that’s how I was diagnosed.

I had lymph nodes that were swollen, so the belly ache that was happening and the uncomfortable feeling that I had in my belly was because my lymph nodes were swollen so much so that they had actually pushed my intestine and it had no space, so the intussusception. And when we did the MRIs, we realized there were lots of lesions from my skull to my, you know, all along my spine. We realized some other ones later as well.

But, you know, that’s how I found out that I had cancer. Fun story is like I’m the first one in my family to have cancer. So, I had no clue what to do or what to expect. It was just like wow I have cancer, what am I supposed to do? And so I think, for me, it was very natural to educate myself about it because actually I did not know what multiple myeloma was. So, it started off from there like What does multiple myeloma mean? What kind of cancer is this? What are the types of treatments there are? What should I do to prepare myself? Because in my case, because I had surgery, I was asked to just rest up and recover from the surgery. And then, have conversations around treatment plans and like what to do and things like that.

For one month, I was just like at home recovering from the surgery but at the back of my mind I knew that well I have cancer, but that’s it. I don’t know what to do about that information. So I used that time to educate myself about the disease, about what happens with multiple myeloma, and what are the stages. I was told that 60% of my cells were damaged and I was in stage 2, and I had no clue what that meant either. So I spent a lot of time researching about the disease, the type of disease, the cancer, the treatments, and all of that. But of course it was very overwhelming initially because it’s a lot of information to take. Some of it was like it’s too much for me at least, like all of the scientific terms, terminology, and labs, and all that kind of things didn’t make any sense to me at the time. But at least it prepared me to speak to my specialist when I finally did meet one.

I live in Minnesota, so I’m very fortunate to live like just two hours drive from Mayo. So all of my reports were actually sent across to Mayo and like a senior hematologist actually reviewed them and double confirmed that the diagnosis that my doctor had done was indeed correct. So when I went to meet the hematologist, I did have some information about my disease. I had information about like the type of cancer, the stages, and like some questions to ask. So I feel like it’s very, very important to self-educate, not only to empower yourself and to learn more about it so you’re prepared for it, but also to make sure that you ask the right questions. And again, I say right in a very loose way. No question is right or wrong. All questions are important, so just ask those questions. Having that education and learning about your disease really helps you prepare for that, so 

I would recommend highly to educate yourself so that you are aware of your own disease and you’re able to ask questions to your doctors or whoever is taking care of you.

I actually got in the habit of writing down my questions, so my phone has questions from 13th of January 2020 to like even now. Whenever I go I have that list of questions because I don’t want to forget something important or I don’t want to leave something because I didn’t have a chance to talk. So I always make a note of the questions that I want to ask before my visit. Things can pop up at any time, so I can get up in the middle of the night and “Oh, I have to ask that question or that’s an important thing that I want to ask.” So, I kind of got in the habit of writing down my questions, and now my doctor knows me so well, she’s like “Ok, what’s your next question with your phone?” So it’s a good habit that I’ve cultivated over a period of time.

I think a lot of website and a lot of information is out there, but it’s important to know what kind of information you want to digest and what kind of information you really want to consume. Because if you type something on Google, there’s a lot of information. It could be opinions, it could be people’s personal stories, it could be good, bad, ugly information. So I think it’s very important to have reliable sources of information, especially when we are undergoing a disease like cancer. So, that is important. 

I think Patient Empowerment Network has some amazing resources. I have actually had the opportunity to go through so many pieces of information there. There are blogs, there are information about medication, clinical trials, nutrition – all sorts of things. So, it depends on what you’re looking for and what you want to know, it’s just a click away. I also particularly like that things are broken down by the types of cancers. So if you’re going for the first time, you’d be like what kind of cancer do you have and if you want to really look into just your type of cancer or type of cancer that you’re going through, you can search in that way too. Or if you just want to generally read about other things, that’s fine too. But you have a lot of resources that can help you with the education of your disease, how to manage it, finances, insurance, you know like second opinions, natural therapies – any sort of information. It’s really useful information. I have actually leveraged a lot of that information throughout my journey, so I would highly encourage that others do too.

As far as providing advice to newly diagnosed patients, I would say first off, don’t freak out. It’s just cancer. So don’t freak out, I have normalized the word cancer in my family. Because, obviously I got cancer, it was like “Oh my God, Cancer”. Here it was almost like a swear word. I just normalize it. I was like it’s a disease, it’s a big disease with big consequences, but we have a plan. We have treatment and the biggest thing was that I was going to not let cancer define who I am and what I do, and I live by that. I’m just like I have cancer and that’s ok. We have a treatment plan. I’m going through a treatment plan and hopefully very soon, I will reach remission and then I will just be on that maintenance for the rest of my life. Fingers crossed. But, that’s about it. I have so many other things to do like my job, my kids, my hobbies, I love painting. There are so many other things to do. 

The only advice I would give is don’t freak out and talk to your doctor. I think building a relationship with your oncologist or your specialist is also very important. First off, be very comfortable with the person you are working with because that is important. Like I had several opportunities to move to a different cancer center or work with a different oncologist, but I felt like I had built a rapport with a certain doctor and I felt very comfortable with her. So, I decided I wanted to go ahead with treatment with her instead of somebody else who was highly recommended by other doctors or other friends that I knew. So I just feel like it’s very important that you feel comfortable with the person you are dealing with because you are going to be dealing with that person for a very long time. So that’s the other piece of advice I would give to newly diagnosed patients. 

I would again underline, do not freak out. There is hope. There is always hope. There is always treatment options. You just have to wait, be patient, and be very, very positive with the whole thing.I was told this many times, and I tell this to others as well, like being positive is super important in life generally, and especially when you have cancer, it’s really important to be positive. Just so that you are, I mean I was also advised that if I am positive that would work better than the medications that I’m getting. So, I have tried to stay positive. I have tried to be upbeat about everything including like I had a bone marrow transplant in June of 2020 and it was quite a challenging procedure. I was positive even when I had like zero platelets in my body and I was like no, this is going to pass. Everything’s going to be fine. Everything is going to be fine and I’m going to get out of this and be able to be with my boys and my family and my friends and be able to party again. So that’s what kept me going. So I would say, please be positive. That will definitely, definitely help you through.


Check out Part II of Sujata’s story: Sharing the Journey

 

Patient Profile: Jeff’s Diagnosis of Parotid Cancer

On April 27, 2020, I received an email plea for help from Debra after she had read my book. Deb’s husband, Jeff, was struggling with a very malignant form of parotid cancer called Acinic Cell Carcinoma that, despite surgery and radiation, had spread to his chest and spine. Worse yet, there were no clear treatment choices available. Over the next 11 months, Deb & I have maintained an almost constant contact via emails and telephone chats. It has been my honor & privilege to get to know Deb. I am most impressed by her innate intelligence, rock solid determination and steadfast perseverance. Jeff is alive today primarily due to Debra’s tireless efforts to find a solution. 

On my request, Deb has penned this story of Jeff’s illness. I sincerely hope that it will inspire other patients and caregivers to become more empowered. Remember, Knowledge is Your Superpower.  Sajjad Iqbal, M.D.


 My husband, Jeff, was diagnosed with high-grade acinic cell cancer of the parotid gland in February of 2018 at the age of 65. He was a very young, healthy 65, who rarely saw a doctor and needed no regular medications. For 37 years he was a teacher and coach at a small school in Iowa. We have now been married for 47 years, have three children and three grandchildren. Jeff retired early from teaching when he was 61, but continued coaching for several more years. He also did small construction jobs with our son. We spent a lot of time traveling by car throughout the United States. It was a shock to both of us to hear that Jeff had this disease since he seemed to be so healthy. 

Several years before Jeff was diagnosed, he mentioned a small lump behind his ear. During a brief physical he had, he asked his doctor about it and was told to keep an eye on it and, if it got bigger, to see a doctor. In January of 2018, he noticed it was getting bigger so he saw the doctor. He was told he needed to get a biopsy but it was probably just a blocked salivary gland. As soon as I heard that, I figured it was cancer as Jeff’s mother had been diagnosed with salivary gland cancer many years before. Hers was a slow growing adenoid cystic cancer that was treated with surgery only. He had his biopsy done at a local hospital and when they said it was cancer, we had them make him an appointment at Mayo Clinic in Rochester, Minnesota which is only a couple of hours from our home. 

He had further testing done at Mayo which also showed a lesion at the top of his spine. In March of 2018, he had two separate surgeries to remove the tumors. Cancer was also found in 9 of 21 lymph nodes. He came through the surgeries with no problems. Soon after, he received six weeks of radiation on both of those spots. This was much tougher on him than the surgeries. His neck was badly burned, nausea, no appetite, etc. He made it through and slowly got back to feeling normal. At that time, we were told that chemo wouldn’t help him so he never received any. Three months later, a scan showed a nodule on his chest wall. They did a biopsy and found it to be the same type of cancer. He had a cyroablation on that spot.

Two months later, we found out that the cyroablation had not worked, the spot was bigger and there were several spots on bone. He had Foundation One testing done on his tumor and it showed very few mutations. There was only one mutation, RET, that had a possible treatment at that time. There was a clinical trial at Mayo for a targeted drug for that mutation and they were able to get him in. He started on that in February of 2019. He experienced no side effects and the chest wall tumor stayed about the same the entire time he was on the trial. Unfortunately, though, it was not stopping the bone mets. He had radiation three days in a row on a couple of them when they started causing him pain. Because it was not stopping the bone mets, he discontinued the trial. His oncologist told us that he didn’t know of any clinical trials at that time that would help him. The only thing he had to offer was chemo and possibly Keytruda but he was doubtful they would help very much. Needless to say, this left us feeling lost as to what to do next. 

The Mayo oncologist had told us that, in his opinion, clinical trials were the best way to go as you could get the newest treatments and you would be closely monitored. That is what I decided to look for first. Luckily, since Jeff was first diagnosed, I had been doing research on his cancer and possible treatments. There wasn’t a lot as it is a rare cancer. I have no medical background but was determined to figure things out as much as I could and find something that might be able to help. I found three clinical trials that I thought might work for Jeff. These trials did not exist when Jeff was first diagnosed. I sent them to his Mayo oncologist who had told me that he would be willing to look over a clinical trial if I found one. He agreed that the one I was most interested in looked like a good possibility and one of the trial locations was Iowa City which is about 3 hours from us. This is a trial that focuses on the genetic makeup of the cancer instead of the type of cancer. One of the mutations that Jeff has is FANCA and this trial was the first one I found where FANCA was one of the mutations they were looking for. Also, Jeff’s mother, who also had salivary gland cancer, is a carrier of the FANCA gene. There is no known relationship between the FANCA gene and salivary gland cancer but I feel there must be a connection. It is a rare cancer and to have a mother and son have it must be extremely rare. Our children have been tested for this gene and we discovered that our son is also a carrier. 

It was in February of 2020 when we went to Iowa City to try to get Jeff into the trial. We found out that they had changed the requirements for the trial and now you had to have had chemo in order to be accepted. The doctor started Jeff on the oral chemo drug, Xeloda, and told us that if anything grew, he would stop the chemo and try to get him in the trial. Jeff was also having some rib and back pain and that was treated with five days of radiation therapy. Following those treatments, he had some heartburn issues for a couple of weeks after which it slowly resolved.

At first, the chemo wasn’t too bad. Soon though, there were many nasty side effects; peeling palms and bottoms of feet, nausea, no appetite, etc. He did not feel up to doing much and spent a lot of time sitting or lying down. He was on this about five months and decided to stop due to the side effects. He was having some back pain during his chemo and was prescribed a narcotic pain reliever. It helped the pain some, but caused constipation, so he had to take more medication for that. He told the doctors he did not like taking the narcotic drug and wanted to find another alternative. They tried one drug and the first night he took it he ended up fainting and having make a trip to the hospital. Needless to say, we stopped that drug right away! They said he was having nerve pain from his spine but were not able to find the exact source. He ended up having a vertebroplasty on his spine as they thought it might help his pain.

Unfortunately, it didn’t help the pain and he also started having a weird feeling of a tight band around his abdomen. We made a trip back to the Mayo Clinic to see a pain specialist there. He thought Jeff might be helped with a nerve block on either side of his spine. He had this done and, not only did it not help, it made the band feeling we were trying to get rid of feel even tighter! This was very disheartening as we really thought it would help. Iowa City had started him on Gabapentin for his nerve pain and had been slowly increasing the dosage. He was also started on a low dose of Lexapro and, between those two drugs, he started to feel less pain in his back. The “band” feeling is still there, but not as bad as it once was. He was finally able to get into the clinical trial in August of 2020. The drug he is on now is a parp inhibitor that targets the FANCA pathway. He has been on this drug for about seven months now with almost no side effects. The targeted tumor has shrunk quite a bit and the bone mets have stayed the same. Unfortunately, on his last scans, there was a new spot on his liver. He was allowed to stay in the trial as it is working on his targeted tumor and he is scheduled soon for microwave ablation on his liver. 

When one treatment stops working, I always look for a new clinical trial first.

It is hard, however, as so many of the trials are for certain types of cancer. Even though you discover (from the mutations) that a certain drug may help your cancer, you can only be in that trial if you have a certain type of cancer. I hope in the future there are many more trials based on the genetic makeup of the cancer rather than the type of cancer. The other problem is that the majority of trials are held at larger hospitals that are just too far away to go back and forth as often as needed. It would be great if there were a way to have some of the treatments done at a larger hospital in your own state. Also, if you have a rare cancer, it is much harder to find clinical trials. 

I have a library background and have always relied on books and articles to find information about various topics. Now that the internet is available that has been my most important tool at this time. Also, websites like PEN, providing patient’s stories, healthy recipes and classes are very helpful. These types of sites have really helped me feel not so alone and have given me much more hope than I have ever received from any oncologist. It is also over the internet that I connected with Dr. Sajjad Iqbal after reading his book “Swimming Upstream.” He has been very generous with his time and willing to give suggestions and advice as he has a cancer similar to Jeff’s. It has been a great comfort to me to be able to e-mail him to get his opinion on something or ask a question. He has also helped me feel more hopeful than anyone else I have talked to – not only by his words but by his courageous example. 

When Jeff was first diagnosed, he was still coaching track. The entire track team wanted to have a benefit for him and sold t-shirts and wristbands, and had a meal and dodge ball tournament to raise money for him. Jeff is a very popular guy in this rural school district and I know it meant a lot that his team did this for him. We have support from our family and friends and feel that we have people we can call if we need something. The pandemic has kept us from getting together with people as often as we would like but we are looking forward to that in the future. 

We know that there is a good chance that Jeff’s cancer may never be cured. If that is true, I would like the next best thing – for him to live as long as possible, as well as possible with the cancer. We have had three very good years living with it and working around his medical appointments. I will do everything I can to help him have more of those years. 

Jeff has handled this whole situation very well from the beginning. He is a pretty laid-back person who takes things as they come and isn’t much of a worrier. He has kind of set an example for me just by taking things as they come. I feel his job is to fight the cancer and my job is to help him fight the cancer. Our lives are pretty much the same as they were before he was diagnosed – only with a lot more doctor appointments! 

Will Telemedicine Bridge Gaps to Equitable Care for Underserved Prostate Cancer Patients?

Remote access to healthcare – also known as telehealth or telemedicine – has become broadly used, especially by cancer patients. Diverse Health Hub is committed to exploring broad social determinants of health and to raising awareness about the roadblocks to equitable care. The truth is, not everyone is getting the same out of healthcare. As an avenue toward reducing inequities, the Patient Empowerment Network (PEN) and DHH have partnered to help foster change toward achieving equitable healthcare for all. One resource, the Prostate Cancer TelemEDucation Resource Center, helps improve prostate cancer patients’ and care partners’ familiarity with healthcare, and thus increase quality of care regardless of the COVID pandemic, geographical location, or racial disparities. The program focuses on the specific needs of Black men and other vulnerable communities to most effectively reduce the disparities that prevent access to equitable cancer treatment.

Here’s a summary view of the knowledge gained about telemedicine to help provide optimal care to prostate cancer patients and to aid in receiving optimal care no matter virus limitations, where patients live, and disparities by race.

Benefits and Limitations of Telemedicine Visits

There are both benefits and limitations of telemedicine visits. Some benefits to keep in mind about telehealth visits include:

  • Active surveillance with lab tests every few months along with telemedicine visits are a good fit for low-risk prostate cancer.
  • Patients with high-risk prostate cancer can increase the frequency of their telemedicine visits along with their recommended in-person treatments.
  • Laboratory test results and prescription information can often be accessed in online patient portals.
  • Remote monitoring is used to reduce the risk of infection for those with reduced immune system function, such as those with prostate cancer.

Telemedicine cannot handle all parts of the prostate cancer care toolkit, however. Some limitations of telehealth include:

  • Prostate cancer treatments like radiation, chemotherapy, and immunotherapy cannot be carried out via telemedicine.
  • Virtual care visits may prevent equitable care access for some patients like those who lack access to a reliable Internet connection or to a smartphone, tablet, or computer.
  • Patients with low health literacy or limited English language fluency may face obstacles to utilizing telemedicine.

#patientchat Highlights: Healthcare Trends: Are They Here to Stay?

Last week we hosted a “Healthcare Trends: Are They Here to Stay?” #patientchat. The #patientchat community came together on Twitter for a lively discussion. Take a look at the top tweets and full transcript from the chat.

Top Tweets

Health Equity


Telehealth


Lack of Access


Full Transcript

Quinoa Stuffed Bell Peppers

Quinoa Stuffed Bell Peppers from Patient Empowerment Network on Vimeo.

Ingredients:

  • 3 cups cooked quinoa
  • 1 (4-ounce) can green chiles
  • 1 cup corn kernels
  • 1/2 cup canned black beans, drained and rinsed
  • 1/2 cup petite diced tomatoes
  • 1/2 cup shredded pepper jack cheese
  • 1/4 cup crumbled feta cheese
  • 3 tablespoons chopped fresh cilantro leaves
  • 1 teaspoon cumin
  • 1 teaspoon garlic powder
  • 1/2 teaspoon onion powder
  • 1/2 teaspoon chili powder, or more to taste
  • Kosher salt and freshly ground black pepper, to taste
  • 6 bell peppers, tops cut, stemmed and seeded

Recipe

  1. Preheat oven to 350 degrees F.
  2. In a large bowl, combine quinoa, green chiles, corn, beans, tomatoes, cheeses, cilantro, cumin, garlic, onion and chili powder, salt and pepper, to taste.
  3. Spoon the filling into each bell pepper cavity. Place on prepared baking dish, cavity side up, and bake until the peppers are tender and the filling is heated through, about 25-30 minutes. (If you’re running short on time, microwave the empty bell peppers for two minutes before stuffing them, and then bake for 8-10 minutes).

History of Bell Peppers

Bell peppers, also called Capsicum annum, are members of the nightshade family of plants. Originating from South America, a wild variety of bell peppers had seeds that dated back to 5000 BC. Though bell peppers had been widely consumed in South America, Central America, and Mexico, it was Spanish explorers and Christopher Columbus who brought these peppers to Europe where they became popularized. Relatives of bell peppers in the nightshade family include tomatoes, eggplant, and potatoes. Paprika is the ground spice made from dried red bell peppers.

Medical Properties of Bell Peppers

Bell peppers are packed with vitamins, minerals, antioxidants, and water. Fresh bell peppers are made up of 92 percent water. Most notably, red bell peppers are especially high in vitamin C and the antioxidant capsanthin. One medium red bell pepper supplies 169 percent of the recommended daily intake of vitamin C. Bell peppers also supply vitamin A, vitamin B6, vitamin E, vitamin K1, folate, potassium, lutein, luteolin, quercetin, and violaxanthin. With the vitamins, minerals, and antioxidants found in bell peppers, they are touted as a healthy food that also helps fight cancer and conditions like heart disease. In supplying a combination of both iron and vitamin C, bell peppers help fight iron anemia with vitamin C aiding the body in the absorption of iron. The antioxidant carotenoids of zeaxanthin and lutein found in bell peppers help protect eye health and against oxidative damage to the eyes.

Surprising Facts About Bell Peppers

Yellow, orange, and red bell peppers are really green bell peppers that have ripened and have increased in sweetness during the ripening process. Covering a large part of the color rainbow, bell peppers are available in red, orange, yellow, green, purple, white, and striped varieties. Red bell peppers boast a high vitamin C content – twice the amount contained in green bell peppers. Even with their bitter flavor, green bell peppers are the most popular bell pepper in the United States. Though many think that bell peppers are vegetables, they are actually fruits like others from the nightshade family. Yellow and red bell peppers contains four times the amount of vitamin C compared to oranges, and purple bell peppers have a similar bitter taste like green bell peppers.


See all recipes from the Cook & Learn series here.

Dying Ain’t Dead

“Can I toss these?” my guy said grabbing the vase of wilting daffodils.

“No,” I shouted. “Please, no. I’m trying to find the beauty in dying,” I said.

I’ve been taking pictures of these flowers since I got them. First, they were tight and closed, then blaring yellow in open-hearted pride, and then, slowly they began to brown and shrivel up. But they are still alive, like me, and that is worthy of notice and celebration.

I’m not ready to add them to the compost bin, not ready to empty the water around their green stems. I can still see the beauty they are as what they were fade. Yes, it’s true, they are not as bright or healthy as they were. But on the planet still and with some life left in them yet, they are. Can I pause to appreciate this not only in myself but in others?

I’ve had a few shit-my-pants scared kinds of nights. It’s not just that recurrence means I can’t be cured, the crap news no one wants but that most of us with ovarian cancer will indeed get. I’ve mostly wrapped my heart and brain around that. I’ve grieved and mourned the old woman I am unlikely to become. I’ve realized there’s no guarantee I’ll be around for graduations, weddings, births, and even the death of others.

“The chances are 50/50 you will be alive in three years,” my oncologist said when pressing me on doing more chemo and maintenance therapies.

“But how much of that time is dying?” I asked, somewhat dismissively.

“None of it if you are alive,” he said. And here, it is important to share that my oncologist is both doctor and minister and though I’m not religious, it is one of the things I love most about him, that and his kindness and responsiveness. Once, when I was fretting, he said, “Never worry alone.” I love a doctor who invites you to share your worries and concerns, and who means it as well. I also have his cell phone and email and he texts me almost immediately after scans. This is invaluable and generous and rare, from what I have heard.

But, in the last few months, I’ve had trouble breathing, exercising, and exerting on any level. I spent a day in the ER ruling out a pulmonary embolism, getting cardiac work-ups, follow-ups, and a specialist appointment to see if I have a right atrial enlargement. The thing about cancer is that it’s not even the cancer that causes most of the problems, but the cancer treatments including chemo, immunotherapy, maintenance drugs as well as all of those in combination. And that’s after surgery, for most, and for some it also means radiation treatment.

The longer I live with cancer, the more often I go to the doctor’s office. I kept saying, “It feels like I’m on chemo but I’m not on chemo,” as though this should be a red flag, an alarm, and mean something significant. It didn’t.

And then, the breathing got even worse, and there was pain that made it hard to sleep, stand, walk, workout, or be. Sometimes the pain was heavy, like a hardness in my chest, or like a weighted blanket on my back. Other times, when I sneezed or hiccupped or breathed in deep it was more like a shooting pain beneath the ribs in my back and was like a bad back where the times you find comfort are far outnumbered by the hours when everything hurts.

Sure enough, there was fluid in my right pleural space beneath my lung. My back got “tapped” like a keg, and it looked like a pitcher of beer was drained from me. Immediately, I felt better – not so much in terms of pain relief but in energy, ability to walk stairs, stand upright for hours, and clean the house. I felt sort of like myself and it made me realize how bad it had actually got. It happened slowly and I thought I was just lazy and out of shape.

I wanted the fluid in my lung to be from the Moderna shot or even maybe a past case of COVID, but the most likely thing, malignant cells and cancer as the cause were indeed what it turned out to be.

Even when I think I’ve sort of realized I might not get to 58 or 60, then it occurs to me that I might not even make it to my next birthday. “Whew,” my oncologist texted when I told him that the pulmonary embolism the PA said meant would require immediate blood thinners and hospitalization, was actually not a pulmonary embolism but a pleural effusion.

How does a mistake like that happen? Is it just from a quick glance of someone in a hurry? Pulmonary embolism and pleural effusion sort of look and sound alike and if you aren’t used to treating cancer patients maybe seem more similar than different.

I don’t know I only know that it’s terrifying to Google pleural effusion and cancer and so I’m not even going to Google pulmonary embolism and cancer. I’ll trust my oncologist’s “whew” and try to think of this as better than it could have been otherwise news.

But, when my oncologist called me about a week later with the cytology and said it was positive, I said, “not as in good news, but positive for cancer, right?”

“Yes,” he said, “Positive for cancer so negative news.”

“Got it,” I said.

“The lymph node growth is small,” he said, “but the recurrence is real.”

Somehow I still feel optimistic. I don’t know if I’m in denial, if it’s all my loved ones lathering me with prayers, calls, and kindness or a bit of both. I am exploring low-dose chemotherapy combined with off-label drugs. I’m not so keen on clinical trials as I used to be given that I wasn’t able to be unblinded when I had cardiac, lung, and even Moderna vaccine related questions about it and when I was (or was not) on PARPs or immuno or both or just placebo.

All I know for sure is that dying is not dead, though I was irritated when my oncologist first said this. I am alive. I am living. This is the way my life is right now and maybe it gets better and maybe it gets worse. I don’t know that yet. And neither, really, does anyone!

“I’ve lived with someone with ovarian cancer,” I told my oncologist, “And dying isn’t the same as living – and can include a lot of misery as well as closeness and intimacy.”

He may treat hundreds and thousands with ovarian cancer but I have the disease and loved and lived with my Nana when she did. I can’t help but think of what those who love me will go through if I get worse, and worse, and worse, and worse. Is there any way we can all see this as life and living? I don’t want to waste my time worrying about death which will come for each and every one of us. But sometimes I do.

I’m trying to savor all forms of beauty and life, including honoring and acknowledging the shifts, changes, and even the breaking and withering. That too is part of life and is why I am glad my oncologist sometimes talks like a minister. Sometimes it takes me a minute or even months to hear and listen and trust and believe him.

Today, I walk the beach with loved ones and furry companions. Today, the sun is shining. Today, I have no horrible or distracting pain. Today, I am aware and awake and have had an exceptionally good week.

Today, I love these daffodils. Today, I can see they are not yet dead while also knowing they are dying. Dying is a also a kind of living and one I’m learning how to appreciate. And if I get more days and times, if my bloom and color returns, I will appreciate it even more. If it doesn’t, that too is a way of life and one we should all learn to notice, accept, and even embrace. We all know, “No one gets out of here alive,” but how many really integrate that knowledge into our way of living? I didn’t. And I hope you don’t have to get cancer to do so.

See below. The same flowers. Two types of beauty.

 

3 Things To Know About Your Cardiac Health During Cancer Treatment

According to recent data from the American Cancer Society, 19 million new cancer cases were diagnosed in 2020 alone. However, times are changing, and cancer patients now have access to better treatment and thus an increased chance of survival. But sometimes the cancer treatment itself has detrimental effects on the body, especially the heart. This can predispose patients to heart diseases or worsen already existing symptoms. Furthermore, chemotherapy, radiation and immunotherapy can cause abnormally high blood pressure, arrhythmia, and in extreme cases, even heart failure. It is important, therefore, not to overlook the health of the heart, as it is vital to the chances of survival when undergoing treatment for cancer. The good news, however, is that the heart can be cared for through healthy life choices, and there’s a lot patients can do to protect themselves throughout their treatment.

How The Heart Is Involved

Chemotherapeutic agents in use during cancer treatment have been extensively studied for years and have some known side effects during the course of therapy. Drugs, such as Adriamycin, which is widely used as the first line of treatment for breast cancer, lymphoma, and leukemia, are known to have the highest risk of developing heart-related symptoms, with a 2% risk for developing heart failure. Two percent might not seem significant, but if combined with another chemo agent, Herceptin, which is used for HER2+ breast cancer patients, the lifelong risk for heart failure is now increased to 8-30%. In fact, adding stress to an already weakened cardiac system can lead to sudden cardiac arrest, which occurs when the heart stops beating suddenly, and is the leading cause of death in the US.

Becoming More At Risk Without Treatment

Although the side effects of some therapies are frightening, it is necessary to weigh up the pros and cons of undergoing chemotherapy. The cardiac problems are rarely present in those undergoing cancer treatment, but often enough that cardiac care and prevention should be focused on before the beginning of therapy. Over time, inflammation can lead to sudden irritation in the cardiac system, which can cause the formation of plaques and blood clots. This will also lead to triggers of a sudden heart attack.

Protecting the Heart During Cancer Therapy

Even with the advancements in medical innovations, treating cancer is not yet a precise science. Before chemotherapy can be authorized to begin by your oncologist, your medical history and results from various tests will be discussed by the medical team to pursue the most efficient treatment. Chemotherapeutic plans are specially tailored to each patient to ensure the best possible outcome and to not interfere with other conditions. During the course of treatment, regular check-ups to monitor the heart for potential conditions are vital so that problems can be found and addressed early on. Healthy lifestyles such as nutritious eating habits, daily exercise, and keeping blood pressure under control are additional, yet vital, ways to keep your heart healthy.

Detecting cardiac symptoms early is key in the treatment of heart problems. To protect your heart during and after treatment, pay attention to your entire body and maintain regular check-ups with your doctor. Not only will doing so give you peace of mind, but it will also pave the way for living a longer and healthier life.

AML Research Updates: News from ASH 2020

AML expert Dr. Jeffrey Lancet shares news from the 2020 American Society of Hematology (ASH) annual meeting. Dr. Lancet sheds light on headlines from the meeting including FLT3 inhibitor research, combination therapies with venetoclax, a promising inhibitor therapy, and shares his optimism about the future of AML treatment.

About the Guest:
Dr. Jeffrey Lancet is Chair and Program Lead in the Department of Malignant Hematology at Moffitt Cancer Center in Tampa, FL. He is nationally and internationally recognized for his clinical research in the field of acute leukemias. Learn more about Dr. Lancet, here.

See More From INSIST! AML


Transcript

Katherine:

Hello and welcome, I’m Katherine Banwell. Today we’ll discuss the latest news from ASH 2020 and how AML patients can advocate for personalized care. Joining me is Dr. Jeffrey Lancet. Welcome, would you please introduce yourself?

Dr. Lancet:

Hi, sure. My name is Dr. Jeff Lancet. I’m at the Moffitt Cancer Center in Tampa, Florida where I am the Chair of the Malignant Hematology Department. We spend a lot of time treating patients and conducting clinical trials of Acute Myeloid Leukemia.

Katherine:

Dr. Lancet, the American Society of Hematology annual meeting just closed. What are the AML headlines from this year’s meeting?

Dr. Lancet:

Yeah, so as usual AML was a very busy area for clinical presentations this year at the ASH meeting focusing largely on novel and targeted therapies. I don’t believe that there were many practice changing delevelopments, per se, but rather discussions about many promising therapeutic strategies that are still under development and moving forward rapidly largely in the areas of targeted therapy, low intensity therapy, measurable residual disease, and things of that nature.

Katherine:

What does this research news mean for patients?

Dr. Lancet:

Well, I think that there is a lot to be encouraged about and maybe I’ll take the time to review some of the highlights in what was presented with respect to some of the novel therapeutic approaches that many of our patients can look forward to receiving in the not-too-distant future.

So we often talk about targeted therapy instead of, of course, one of the major targets over the years has been that of a mutated FLT3, which is one of the most common mutations in AML.

And at this meeting, we saw several presentations on clinical trials results utilizing Inhibitors of FLT3 with some emphasis on the most recently approved 2nd generation drug called gilteritinib.

There were, I thought, three major presentations focusing on gilteritinib. One was an update on a randomized phase 3 trial comparing gilteritinib plus azacitidine versus azacitidine alone in newly diagnosed unfit for induction chemotherapy patients with FLT3 mutations. Preliminary showing good tolerability and high composite complete response rates in the combination arm. 

There was another trial of gilteritinib plus venetoclax in relapsed refractory FLT3 mutated AML and what was interesting was that a very high percentage of patients achieved response with this combination of gilteritinib plus venetoclax. Many of whom were heavily pre-treated previously and many of whom had also got prior FLT3 inhibitor therapy during an earlier stage of the disease, so the combination of gilteritinib plus venetoclax in this more refractory setting was encouraging to see these promising responses.

And then we say some data reporting the effects of gilteritinib in combination with more traditional chemotherapy induction with a couple of studies demonstrating both high complete response rates, as well as high rates of mutation clearance of the FLT3 mutation. So those are very encouraging data that were presented with respect to the FLT3 mutated AML population. 

So another very important drug that reached the marketplace for AML recently is a drug called venetoclax, which is an inhibitor of a protein called BCL2. And this drug was recently FDA approved for use in combination with low-intensity chemotherapy drugs such as azacitidine or decitabine. And it seems as though the combination of venetoclax plus one of these hypomethylating agent drugs, azacitidine or decitabine, has resulted in very strong efficacy signals as recently published in the New England Journal of Medicine paper that reported on the results of the Phase 3 trial of venetoclax plus azacitidine.

So that has now become standard of care for older, less fit adults with newly diagnosed AML. The combination of venetoclax plus hypomethylating agent such as azacitidine. And naturally there’s been interest in really kind of taking it several steps further to advance the role of these combinations and to also look at additional drugs in combination with venetoclax plus hypomethylating agent therapy. So, we saw some of that at the ASH meeting this year.

One approach would be to take venetoclax and then to combine it with more intensive chemotherapy for perhaps more fit patients or younger patients that could undergo a more intensive program. So we saw presentations of venetoclax being combined with a drug called CPX-351 which is a novel liposomal formulation of two common chemotherapy drugs that had been approved a few years ago for secondary AML. And we also saw a combination strategy with venetoclax and a regimen known as FLAG-IDA, which is a commonly used induction regimen in Acute Myeloid Leukemia.

I think it’s important to recognize that although these trials they combine venetoclax with more intensive chemotherapy show signs of good efficacy with good response rates, there are definitely signals of increased toxicity, hematologic toxicity, primarily. Which is not really unexpected with venetoclax knowing that it can cause significant lowering of white blood cells, platelets, and hemoglobin.

Then finally, there is a lot of interest in doing these types of combinations with venetoclax in different subsets of AML. And one subset of AML that has been very important recently is that of the IDH-mutated AML population of patients. IDH is a fairly common mutation that occurs in either in the form of IDH1 or IDH2, and there’s about a 15-20% incidence of IDH mutations in AML. Though we do have an inhibitor for both of these types of mutations, ivosidenib for IDH1 and enasidenib for IDH2, but there also appears to be a strong role for venetoclax plus azacitidine in IDH mutated AML. We saw from a series of patients presented by a physician at MD Anderson looking at outcomes with venetoclax plus azacitidine in IDH mutated AML. The response rates were very high when you give HMA plus venetoclax to these patients with IDH mutated AML. But, I think more importantly, is that there were what we call high intra-patient response rates when switching between venetoclax and HMA therapy with IDH inhibitor continued regimen. In other words, a patient would have a good chance of responding to the initial therapy, then, if or when that therapy stops working, having a good effect from the salvage therapy with the other regiment, So if you received initially azacitidine plus venetoclax, and then had a relapse, the IDH inhibitors worked well and vice-versa if have received an IDH inhibitor, then subsequently received HMA/venetoclax at a later time point, that also worked well.

So it’s encouraging to see that you can potentially sequence these drugs and get continued responses along the way that ultimately we think that will help survival and keep patients in a better state of health for longer.

So I just wanted to take a few minutes also and discuss some of the newer more novel therapies that are really hitting or approaching the landscape right now. One of these is called CC-486, also known as oral azacitidine or onureg, and this drug was shown in a recent literature to prolong overall survival in patients who are in first remission from their AML who had received induction chemotherapy. So this drug was used as maintenance therapy after a variable number of consolidation regimens and people who got this onureg or azacitidine drug as maintenance therapy, it resulted in longer survival compared to those who had received placebo. This was presented at last year’s ASH meeting, but this year’s ASH meeting provided an update, a very important update, showing that the overall survival advantage from this drug, this oral azacitidine drug, when used as maintenance was independent of whether a patient had measurable residual disease at the time that they went on to the maintenance therapy. In other words, whether you had MRD (measurable residual disease) or not at the time of the study entry, your responses were still more favorable, your outcomes were more favorable if you received this oral azacitidine drug. So this was FDA approved earlier this year for patients in the maintenance phase of therapy for AML who had got prior induction chemotherapy. 

And importantly, this drug was also shown to be able to convert about 25% of patients who were positive for measurable residual disease, to convert them from positive to negative. So even though they were in remission, they had measurable residual disease and this drug in about 25% of the cases converted them from positive to negative. So that’s a very important finding as well. 

Another important drug that I think you should keep your eye on is a drug called magrolimab. This is an antibody against a certain type of protein that is present on an immune system cell called the macrophage. And when this magrolimab drug is combined with azacitidine in a recent clinical trial, it was demonstrated very high response rates of over 65%, and in particular in patients with P53 mutation, which is a very bad mutation to have in most cancers including AML. In patients with this high-risk mutation, the combination magrolimab with azacitidine appears to be effective based on the early data that we have with high response rates.

And then finally, I just wanted to make mention of another important area in, not really just AML, but all cancer, and that’s outcomes disparities between different races and ethnic groups. And we saw a very important presentation at the plenary session this year where the authors reported outcomes amongst younger patients with AML who are African American compared with caucasion. And the data clearly indicated a worse overall survival amongst black patients compared to white patients under age 60. And this included patients who are enrolled in clinical trials. So that, it appeared that African American patients had a worse outcome than Causian patients with Acute Myeloid Leukemia. Highlighting the need to better understand various risk factors and other factors that play into these disparate outcomes between our black American population and our white American population, which I think could shed light on additional disease characteristics that many help everybody.

Katherine:

Dr. Lancet, thanks so much for joining us today

Dr. Lancet:

Thank you very much for having me. It was good to be with you.

Katherine:

And thank you to our audience, I’m Katherine Banwell.


Don’t miss an episode and subscribe to PEN’s Empowered! Podcast wherever podcasts are available.

Ways to Stay Connected with Loved Ones During Hospital Stays

The COVID-19 pandemic has changed so many things about the healthcare industry, including the way patients, providers, and visiting loved ones stay safe. Luckily, since January 2021, hospital admissions due to COVID-19 have decreased by 67%1.

But, for people with cancer who often deal with a weakened immune system and longer-term hospital stays, the threat of COVID is still very real, very scary, and very dangerous. Whether you’re in a long-term care facility or you’re able to be at home with the help of a caretaker, it’s crucial to be vigilant when it comes to keeping yourself safe and social distancing.

Unfortunately, that can lead to issues with your emotional and mental health. Isolation and loneliness have become real problems throughout this pandemic, and isolation has been shown to negatively affect the immune system and can cause mental health issues like depression or anxiety. A lack of interaction can even negatively impact how you respond to treatment in the hospital2.

So, what can you do to socialize with your loved ones while keeping yourself safe and socially distanced?

Take Advantage of Technology

While the pandemic hasn’t been easy on anyone, there is one silver lining to the fact that it came in 2020 — we have highly advanced technology to help us through it. Thanks to that technology, it’s easier than ever to stay connected virtually to the people you love.

Everything from scheduling daily FaceTime calls with your family members to having larger Zoom gatherings once in a while can help you feel more connected with everyone you care about. While video chatting isn’t the same as being with someone in person, it’s the next best thing. Thankfully, it still allows you to see expressions and feel a sense of “belonging” when you’re talking.

Technology also gives you the power to send text messages, make phone calls, and even find unique ways to connect with loved ones. You can play games together online, chat in messaging apps, or even watch a movie together, thanks to platforms like Teleparty.

By getting creative with your technology use, you can make the most of what you’re given and find unique ways to stay in touch, even when you can’t be together.

Be a Part of Big Events

Life goes on, whether you’re dealing with an extended hospital stay or you’re in a care facility that is unsafe to leave right now. Unfortunately, that might mean you have to miss out on some major events with your family and friends.

Again, technology comes to the rescue to make sure you can still be a part of big family moments. For example, if you want to go to your young relative’s birthday party but you can’t leave the hospital, consider talking with their parents about a virtual party. If your child is the one fighting cancer and has to stay in the hospital, a virtual party is an even better idea. It allows them to be celebrated while staying safe. Just make sure to:

  • Plan ahead
  • Choose a digital platform
  • Install the right software
  • Pick a theme
  • Send out invitations
  • Create a fun schedule

Other life moments shouldn’t be missed just because you’re in the hospital. Many couples have held “virtual weddings” or vow renewals over the last year, allowing family members and friends to “tune in” to their special event. Encourage your loved ones to utilize technology as much as possible, especially when they have an event planned. It will allow you to remain involved and be a part of everything while staying safe and healthy.

Seek Support

If you’re feeling lost and alone because you can’t be with your loved ones in person, it’s important to know that you’re certainly not alone in how you feel. But, letting stress and anxiety overwhelm you due to loneliness will only make matters worse. Additionally, it can impact your treatment and change your outlook in a negative way.

One of the best things you can try to do for yourself in times of isolation is to reduce your stress levels. Find things that relax you or utilize practices that are known to reduce anxiety, like:

  • Breathing exercises
  • Getting enough sleep
  • Exercising
  • Practicing mindfulness

Once you’re better able to manage your stress, don’t be afraid to seek out support in different or unique ways. Talk to your doctors and nurses that you see on a daily basis. Connect with other patients you might regularly see. If you’re in a care facility, take part in different activities that are offered.

You can also take advantage of technology once more by considering teletherapy3. If you’re truly struggling with loneliness and isolation, talking with a mental health professional can help. Telehealth has become increasingly popular throughout the pandemic, and online therapy is no exception. You can connect with a therapist from anywhere in the country without having to leave your bed. Or, consider joining an online support group for cancer patients. It’s a convenient and effective way to manage your mental health and combat feelings of loneliness while understanding that this pandemic won’t last forever.  Already, there is a light at the end of the tunnel. Take comfort in knowing that it may not be long before you can see your loved ones face-to-face again. Until then, keep these ideas in mind to stay connected and to fight back against isolation.


Sources

  1. https://www.cdc.gov/coronavirus/2019-ncov/covid-data/covidview/index.html
  2. https://www.nih.gov/news-events/news-releases/social-interaction-affects-cancer-patients-response-treatment
  3. https://www.apa.org/monitor/2017/02/online-therapy

Health Equity and Myeloproliferative Neoplasms (MPNs)

Health Equity and Myeloproliferative Neoplasms (MPNs) from Patient Empowerment Network on Vimeo.

MPN Network Managers Jeff and Summer share their thoughts on how health equity can impact various MPN patients. They focus on a big factor in equity and MPN patients being location. Unfortunately, not everyone may have access to a specialist due to their geographic location. Summer who is living with myelofibrosis and her care partner Jeff both admit they were lucky to find a specialist in San Diego. Hear Jeff and Summer share The Importance of Finding a Myeloproliferative Neoplasm (MPN) Specialist. 

Want to connect with Jeff and Summer? Email them at question@powerfulpatient.org or text EMPOWER to (833)213-6657.

Notable News March 2021

While we’ve heard a lot about the vaccine for Covid-19, vaccines for cancer have been in development behind the scenes, and they show a lot of promise. Traditional treatments, like surgery, are still helpful as well, and early screenings are key to better survival rates. However, cancer survivors need to pay attention to their hearts, and young men need to be aware of any changes to their skin.

Melanoma is on the rise among younger men, and doctors aren’t quite sure why, reports menshealth.com. It is the fifth most common cancer for men and one of the top three among young adults. Research shows that young, non-Hispanic white men make up more than 60 percent of melanoma-related deaths. Doctors have some theories about why younger men are particularly at risk for melanoma, but the reasons aren’t entirely clear. One theory is that men could be biologically prone to developing melanoma because of their sex hormones. It’s thought that testosterone may cause melanoma to spread quickly and grow faster. Learn more here.

Cancer survivors have a higher risk of heart disease, reports pharmacytimes.com. A new study shows that 35 percent of Americans who have had cancer have an elevated risk of heart disease, compared to 23 percent of those who have never had cancer. Some of the treatments that cancer patients receive, such as radiation and chemotherapy, can affect cardiovascular health, and researchers hope that more attention will be paid to those risk factors. Read more here.

There are new lung cancer screening guidelines that increase the recommended number of people who get yearly CT scans for lung cancer, including more African Americans and women, reports nytimes.com. The new guidelines, which were previously established based on data for white males, reduce the age and smoking history requirements, and now include people, aged 50 to 80, who have smoked at least a pack a day for 20 years or more, and who still smoke or quit within the past 15 years. The goal is to detect lung cancer early in people who are at high risk due to smoking. By reducing the age and smoking history requirements for screening, more women and African Americans will likely benefit from the new guidelines as they tend to develop cancer earlier and from less tobacco exposure than white males. CT scans can reduce cancer death risk by 20 to 25 percent. Learn more here.

A Global Breast Cancer Initiative was introduced this month by the World Health Organization, says www.who.int. The initiative seeks to reduce global breast cancer mortality by 2.5 percent each year until 2040. Breast cancer has surpassed lung cancer as the most commonly diagnosed cancer worldwide. Survival rates have increased in high-income countries, but in low-income countries less progress has been made. To implement the initiative, global partners will use strategic programs that include health promotion, timely diagnosis, and comprehensive treatment and supportive care. Read more about the global initiative here.

Researchers have developed a vaccine that uses tumor cells in a patient to train the immune system to find and kill cancer, reports news.uchicago.edu. The vaccine is injected into the skin and has shown that it stopped melanoma tumor growth in mice. The vaccine is a new, and potentially safer and less expensive, way of using immunotherapy to treat cancers. It works as a therapeutic vaccine, activating the immune system to kill cancer cells. Researchers are planning to test the method on breast and colon cancers, as well as other types of cancers, and eventually plan clinical trials. Learn more here.

A Phase 1 trial is showing incredible promise for a brain tumor vaccine, reports newatlas.com. Research shows that the vaccine is safe and that it triggers an immune system response that slows tumor progression. The vaccine targets a gene mutation common in gliomas, which are a hard-to-treat type of brain cancer. The trial showed that 93 percent of patients had a positive response to the vaccine, and no tumor growth was seen in 82 percent of patients after three years. While the results are promising, researchers are cautious and say larger studies need to be done. A Phase 2 trial is being planned. Find more information here.

New treatments are exciting, but some traditional treatments might need more consideration in some cancers. Surgery, after chemotherapy, increases lifespan of pancreatic cancer patients, reports eurekalert.org. A new study shows that stage II pancreatic cancer patients who are treated with chemotherapy and then surgery to remove the cancerous area, live almost twice as long as patients treated only with chemotherapy. The data also shows that patients live longer even if the cancerous area isn’t completely removed. The study reveals that surgery is helpful in treating more pancreatic cancer patients than was previously believed. Learn more here.

Patient Advocacy: 21 Tools To Help You Achieve More With Social Media

Recently I had the pleasure of taking part in an Ask Me Anything #patientchat about social media (If you missed it you can catch the transcript here). I had forgotten how fast-paced a Twitter chat can be and given that social media is such a huge topic, inevitably I didn’t get to cover everything in that one hour.

One thing I really wanted to share but didn’t get a chance to go into in great detail is how useful it is to have some go-to tools to help you do more with social media. So I’ve put together this list of my own favorite social media apps. Whether you want to edit an image, create custom graphics or schedule your social media posts, there’s a tool here to suit your needs. Best of all, each of the tools listed are free so you can try them out before deciding if you want to upgrade to a paid tool or feature.

1. Adobe Spark

A free suite of apps which allow both web and mobile users to create and share visual content such as posts for social media, graphics, web stories, and animated videos. https://spark.adobe.com

2. Anchor

Anchor is an audio recording app for micro-podcasting, audio broadcasting, Q&As, and more. Features like sound clips and transcriptions make it simple to create audio for social media. Billed as “the easiest way to make a podcast, ever,” it lets you record a high-quality podcast, and distribute it everywhere (including Apple Podcasts) — all in one place. No fancy equipment or podcasting experience necessary, and it’s 100% free!

https://anchor.fm

3. BeFunky

There is so much you can do with this tool to enhance your visual marketing assets, including creating collages, adding “one-click” photo effects (there are over 300 photo effects and filters to choose from) and an array of graphics (eg speech bubbles). The basic account is free to use and provides users with access to a library of 125 digital effects. https://www.befunky.com

4. Biteable

A desktop video creation tool. You can choose from a selection of pre-designed templates or you can build your video from scratch yourself. Biteable hosts a large collection of video clips and images (many of these clips are included with the free plan) to add to your templates. It also provides simple animation and claymation sequences to help you produce engaging explainer videos in just a few hours. Biteable’s free plan allows you to create five projects per month and publish HD-quality video to YouTube and Facebook. https://biteable.com

5. Buffer

Buffer is my go-to tool for scheduling my social media updates and with the Chrome extension, you can schedule content easily while browsing. It lets you design specific posting patterns and schedules to optimize your online presence. It’s free to post up to ten updates to one social channel only per day— to post more updates to more channels and to access analytics you will need to upgrade to a paid plan. https://buffer.com

6. Canva

Whether you want a Twitter post or Facebook profile picture, you can create them quickly using Canva’s drag and drop editor. Select from a number of pre-set designs, or create something from scratch. You can also add elements such as custom icons, fonts, charts, animations and illustrations. https://www.canva.com

7. Easil

Easil is a simple, browser-based system with pre-made templates that you can adapt in seconds with simple drag-and-drop tools. It’s especially useful for Instagram and Facebook stories. https://about.easil.com

8. Hemingway Editor

A proofreading tool which clears your text of all unnecessary copy. Just paste your text into the editor and you’ll get an analysis that highlights lengthy, complex sentences, adverbs, passive voice, and common errors. https://hemingwayapp.com

9. Infogram

Infogram is an infographic and data visualization tool. The Basic (free) plan is intended only for non-commercial use, such as personal projects, blogs and presentations, within the limits of fair use. It includes 37 chart templates and allows users to generate up to 10 three-page projects based on their data. https://infogram.com

10. Life of Pix

Life of Pix offers free, high-quality images that are available for personal and commercial use. Each comes with a helpful color palette so you can plan your visuals accordingly. https://www.lifeofpix.com

11. Lumen5

This is a cool tool that enables you to turn your blog posts into slideshow-type videos in minutes. The free plan includes unlimited videos, access to 10 million video files, and 480p-quality video with the Lumen5 watermark. You can also upload your own logo. Upgrading to the Pro plan ($49/month) lets you remove the Lumen5 branding, upload your own watermark and outro, and more. https://lumen5.com

12. Pexels

Pexels provides over 3,800 high-resolution photos, collated from other free image sites — making it one of the largest free image directories. Pexels has also added a large library of stock videos to its site also under the creative commons license. Use the site’s list of popular searches to find the most in-demand stock video. https://www.pexels.com

13. Pocket

I use Pocket to batch my reading of online articles. Whenever I find something interesting I save it to Pocket to read when I have more time to focus. You can also share interesting articles directly to Twitter and Facebook or schedule it to Buffer. I like the daily recommended reading list which always brings something new and interesting into my inbox. https://getpocket.com

14. Quotes Cover

Quotes Cover turns quotes or short text into images for social media and high resolution images for posters or other print design. It’s so simple to use. Simply enter your quote or text and then choose your preferred design elements, such as font, shadow effect, and color. https://quotescover.com

15. RiteTag

This is a useful Chrome extension which gives you instant feedback on your hashtag choices as you type them. It checks the hashtags you begin typing in real time and color codes them according to which hashtag will get the most engagement for you. https://ritetag.com

16. Ripl

A mobile app that lets you create short animated videos with professionally designed templates. Ripl is integrated with the major social media platforms, so sharing your final video is easy. Once you’ve connected your social profiles to Ripl, you can post directly to Facebook, Facebook groups, YouTube, LinkedIn, and more. You can export your videos if you want to use them outside of your social media platforms. https://www.ripl.com

17. Scoop.it

A super content curation platform that allows you to easily find and share unique, relevant content to your social networks, website or blog. The free version will allow you to monitor a single topic and use the content generated on up to two social media accounts https://www.scoop.it

18. Twitonomy

This tool provides detailed visual analytics on keywords and hashtags, top related hashtags and more. You can use it to export tweets to Excel, track clicks on the links in your tweets, and track the evolution of a particular hashtag over time.

http://www.twitonomy.com

19. Unsplash

Unsplash gives you access to a bank of 50,000+ free-to-use photos. All photos are licensed under Creative Commons Zero, which means you can copy, modify, distribute and use the photos for free, including commercial purposes, without asking permission from or providing attribution to the photographer or Unsplash. https://unsplash.com

20. Veed

Say goodbye to clunky video software and hello to one-click editing online.

With Veed, you can create and edit amazing videos, add subtitles, animations, audio and more. It works on your Windows or Mac computer, no software download or plugin required.

https://www.veed.io

21. WordSwag

A mobile application that turns your ideas, quotes, and content into attractive graphics that can be shared on social media.

http://wordswag.co

 

I feel sure you will find some tools in the list above to help you get more creative with social media and achieve more online.

Here’s to your social media success!

#patientchat Highlights: Ask Me Anything (AMA) with Marie Ennis-O’Connor

Last week we hosted an “Ask Me Anything (AMA)” Empowered #patientchat with Marie Ennis-O’Connor (@JBBC) where she answered everyone’s pressing questions about social media. The #patientchat community came together on Twitter for a lively discussion. Take a look at the top tweets and full transcript from the chat.

Top Tweets

Learn How to Create Professional Graphics


“Sharing can be used as medicine, mental health support, a tool to raise ur quality of life”


Practical information presented in human-centered language


Full Transcript