Tag Archive for: cancer

What COVID-19 Vaccine Efficacy and Side Effects Do Cancer Patients Experience?

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What COVID-19 Vaccine Efficacy and Side Effects Do Cancer Patients Experience? from Patient Empowerment Network on Vimeo.

What do cancer patients experience in COVID-19 vaccine side effects and effectiveness? Expert Dr. Shaji Kumar explains side effects reported in both cancer patients and non-cancer patients, what’s known about immune response from the vaccines, and current COVID-19 vaccine recommendations. 

See More From the Best Care No Matter Where You Live Program

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How Can Cancer Patients Protect Themselves During COVID-19

What Actions Should Cancer Patients in Treatment Take with COVID-19 Vaccination?

Transcript:

Jeff Bushnell:

For cancer patients who have tested positive for COVID, are there notable consistencies amongst that group of people, and have we learned anything from those patients yet about maybe their chances of getting it more, or their reaction to it?

Dr. Shaji Kumar:

We know that there’s a wide spectrum of reaction to the vaccine. The majority of the people would not notice any symptoms related to that except for some pain at the injection site. There are some folks, number of people who might have more or just myalgia, muscle pains, just feeling fatigue, some low-grade fevers, just feeling blah for 24-48 hours, and it seems to be not too uncommon. The reactions to the vaccine in terms of the side effects or the symptoms, there doesn’t appear to be much of a difference between cancer patients and normal individuals. Now, in terms of the efficacy of vaccination, there’s going to be a wide variation in terms of how strong an immune response one might develop against vaccines. We know from, not necessarily the COVID vaccine, but the vaccinations that have been used in the past, whether it be flu vaccines or pneumococcal vaccines, that we all get patients with cancer or patients going through treatment for cancer that can suppress the immune system, tend to have a lower response. But again, that varies quite widely from patient to patient now, there are some vaccines where we can clearly look at the antibody response and say, “Oh, this is not adequate, and we need to maybe give an extra shot.”

We just don’t have that information for COVID vaccines yet. So the way I would look at it is, even though the response in a given person might be less than what we eventually would identify to be optimal, it’s likely to be better than not having the vaccine, so I would encourage obviously, everybody to get the vaccine. Now, what about someone who has already had an infection, what would be the response? Should we vaccinate those people? We certainly should. Again, we don’t know the immunity from a natural infection, how long would that last? That is still something that is unknown, and the vaccination dose is likely to make the responses more relevant and more durable, so I would recommend the vaccines for everyone. We don’t think one vaccine is any different from another in terms of your underlying cancer or lack thereof. So in terms of assessing for the antibodies, there is no clear guideline in terms of what one should anticipate from the vaccine, so there is really no way to say, check the antibody, and they can go ahead and get one more dose or you’re fully vaccinated. So I think the bottom line is, get the vaccine, you don’t need to necessarily test for a response, and then we continue with the usual measures for prevention

How Can Cancer Patients Protect Themselves During COVID-19?

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How Can Cancer Patients Protect Themselves During COVID-19? from Patient Empowerment Network on Vimeo.

How can cancer patients and their loved ones protect themselves from COVID-19 infection? Expert Dr. Shaji Kumar shares information about the risk of infection for cancer patients and advice for precautionary measures against the virus.

See More From the Best Care No Matter Where You Live Program

Related Programs:

What Actions Should Cancer Patients in Treatment Take with COVID-19 Vaccination?

 

Transcript:

Mary Leer:

What should every patient and care partner facing a cancer diagnosis know during the pandemic?

Dr. Shaji Kumar:

I think it’s a challenging time for everyone, and it’s obviously more challenging for patients dealing with cancer at the same time, thankfully, we have a vaccine at hand that will certainly make the situation a lot better, but I think from a cancer standpoint, I think what we need to keep in mind all the precautions we talk about in terms  of social distancing, masking, hand washing and all those measures apply equally to everyone, even more so to patients with cancer. And the reason why we say that it’s even more important for several reasons, one, and we continue to learn more about the pandemic and its impact on cancer, one thing that has become clear is that patients with underlying conditions including cancer are to other folks were more affected by the infection, more likely to have more severe interactions and poorer outcomes. Now, patients with cancer appear to be at a higher risk of getting the infection and then they get the infection having a more serious disease. Now, it’s hard to know how much of this is also related to the fact that patients with cancer often have to go into the hospital or the clinic, and hence are more likely to get exposed to the infection than someone who is able to just stay at home.

So that’s one thing. And second, we know that the ongoing treatment for cancer definitely suppresses the immune system, and hence places people at a higher risk of the infection itself. Now, even patients who have their past history of cancer, this appears to be some increased risk, even though this is a little bit, unclear how much more it impacts those individuals. But I think the bottom line is keep the awareness that you might be at a higher risk of getting the infection, more serious infection, and the need to take those precautionary measures in a more strict fashion, and getting the vaccination when you can get it is all things that one needs to keep in mind.

Empowered Patient and Care Partner Ask the Expert: Addressing COVID-19 Concerns

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Empowered Patient and Care Partner Ask the Expert: Addressing COVID-19 Concerns from Patient Empowerment Network on Vimeo.

With COVID-19 infection and vaccine concerns, what are the key points for cancer patients and care partners to know? Expert Dr. Shaji Kumar from Mayo Clinic shares valuable information about protective measures against COVID-19 infection, vaccine side effects and effectiveness, working toward herd immunity, and cancer research benefits that have emerged from the pandemic. 

See More From the Best Care No Matter Where You Live Program

Related Programs:

How Can Cancer Patients Protect Themselves During COVID-19

Transcript:

Mary Leer:

My name is Mary Leer. I’m the Breast Cancer Network Manager.

Jeff Bushnell:

And I’m Jeff Bushnell, the MPN Network Manager at the Patient Empowerment Network. I’m a caregiver.

Dr. Shaji Kumar: I

’m Shaji Kumar, a hematologist at Mayo Clinic.

Mary Leer:

Jeff and I are proud to be part of a strong team of compassionate volunteers, helping health communities adapt to the realities of living with a serious illness, living with cancer during a pandemic certainly presents another layer of challenges. So, Jeff and I will drill down to ask the important questions from the community. For this production, Empowered Patient and Care Partner Ask the Expert, we are very lucky to be joined by noted expert, Dr. Shaji Kumar, a consultant in the division of hematology at Mayo Clinic. Thank you for taking the time to join us, Dr. Kumar.

Dr. Shaji Kumar:

Thank you for having me, Mary.

Mary Leer:

Let’s start with the top of mind questions for so many of us right now, what should every patient and care partner facing a cancer diagnosis know during the pandemic?

Dr. Shaji Kumar:

I think it’s a challenging time for everyone, and it’s obviously more challenging for patients dealing with cancer at the same time, thankfully, we have a vaccine at hand that will certainly make the situation a lot better, but I think from a cancer standpoint, I think what we need to keep in mind all the precautions we talk about in terms  of social distancing, masking, hand washing and all those measures apply equally to everyone, even more so to patients with cancer. And the reason why we say that it’s even more important for several reasons, one, and we continue to learn more about the pandemic and its impact on cancer, one thing that has become clear is that patients with underlying conditions including cancer are to other folks were more affected by the infection, more likely to have more severe interactions and poorer outcomes. Now, patients with cancer appear to be at a higher risk of getting the infection and then they get the infection having a more serious disease. Now, it’s hard to know how much of this is also related to the fact that patients with cancer often have to go into the hospital or the clinic, and hence are more likely to get exposed to the infection than someone who is able to just stay at home.

So that’s one thing. And second, we know that the ongoing treatment for cancer definitely suppresses the immune system, and hence places people at a higher risk of the infection itself. Now, even patients who have their past history of cancer, this appears to be some increased risk, even though this is a little bit, unclear how much more it impacts those individuals. But I think the bottom line is keep the awareness that you might be at a higher risk of getting the infection, more serious infection, and the need to take those precautionary measures in a more strict fashion, and getting the vaccination when you can get it is all things that one needs to keep in mind.

Jeff Bushnell:

Well, that’s wonderful, Dr. Kumar, you mentioned the vaccinations, I am a strong proponent of that, I happen to have been involved in the Moderna vaccine trial, which is and still enrolled, they’re doing the follow-up. I guess they’re checking the last time I was in last week, they took 8 vials of blood, I think they’re checking to see whether I have the antibodies and how long it will last, but I was very happy with the way it was conducted, they were very forthcoming with information.

It was very interesting. And out here in San Diego, where I am, we have done pretty well as a county in vaccinating people and Summer got the vaccine as well with myelofibrosis and she feels a lot better. But for cancer patients who have tested positive for COVID, are there notable consistencies amongst that group of people, and have we learned anything from those patients yet about maybe their chances of getting it more, or their reaction to it? That kind of thing.

Dr. Shaji Kumar:

We know that there’s a wide spectrum of reaction to the vaccine. The majority of the people would not notice any symptoms related to that except for some pain at the injection site.  Not there are some folks, number of people who might have more or just myalgia, muscle pains, just feeling fatigue, some low-grade fevers, just feeling blah for 24-48 hours, and it seems to be not too uncommon. The reactions to the vaccine in terms of the side effects or the symptoms, there doesn’t appear to be much of a difference between cancer patients and normal individuals. Now, in terms of the efficacy of vaccination, you just mentioned Jeff, about you being checked for the antibodies, obviously, that is something that we hope will happen to all individuals who get the vaccine, but we know that is not going to be the case, there’s going to be a wide variation in terms of how strong an immune response one might develop against vaccines. Now We know from, not necessarily the COVID vaccine, but the vaccinations that have been used in the past, whether it be flu vaccines or pneumococcal vaccines, that we all get patients with cancer or patients going through treatment for cancer that can suppress the immune system, tend to have a lower response. But again, that varies quite widely from patient to patient now, there are some vaccines where we can clearly look at the antibody response and say, “Oh, this is not adequate, and we need to maybe give an extra shot.”

We just don’t have that information for COVID vaccines yet. So the way I would look at it is, even though the response to the back in a given person might be less than what we eventually would identify to be optimal, it’s likely to be better than not having to see the vaccine, so I would encourage obviously, everybody to get the vaccine. Now, what about someone who has already had an infection, what would be the response? Should we vaccinate those people? We certainly should. Again, we don’t know the immunity from a natural infection, how long would that last? That is still something that is unknown, and the vaccination dose is likely to make the responses more relevant and more durable, so I would recommend the vaccines for everyone. We don’t think one vaccine is any different from another in terms of your underlying cancer or lack thereof. So in terms of assessing for the antibodies, there is no clear guideline in terms of what one should anticipate from  the vaccine, so there is really no way to say, check the antibody, and they can go ahead and get one more dose or you’re fully vaccinated. So I think the bottom line is, get the vaccine, you don’t need to necessarily test for a response, and then we continue with the usual measures for prevention.

Jeff Bushnell:

And so what would you tell the… I guess that’s pretty much the answer to the next question I had. What would you tell the patients who are in active treatment and who planned to get the vaccine just continue as normal after they get it, with all the appropriate precautions?

Dr. Shaji Kumar:

Yeah, no, I think there’s one other important aspect, Jeff, to that question you just raised, which is, what is the right timing to get vaccinated, the vaccine, and that is a question that often comes up. So patients who are not getting active treatment, there is obviously no concern whenever the name comes up, go ahead and get the vaccine. And the second is what if someone is actually getting active treatment for their cancer, is there any role in terms of trying to find the vaccination, with respect to the doses of the medications and for most of the treatment we are using for cancer, there are no clear guidelines in terms of the when they can get the vaccine, that having several guidelines that have been put out by different organizations. The bottom line is, if there is an ability to space out or give sometime between the vaccine and the dose of the medication, do that, don’t modify your treatments, just so that you can get the cross at a particular time. The only place where we would recommend specific guidelines within the context of somebody who may have had a bone marrow transplant or had some other kind of cellular therapies, in those contexts, we often recommend that you wait for a couple of months after the stem cell transplant, before we get the vaccines. But for all the other treatments that we are getting right now, we want to just within the schedule of the treatment that’s already on going, try and get the vaccine in between two doses.

Mary Leer:

For those who have been vaccinated and are living with cancer, you spoke to that in great depth, but I’m also wondering about people that are perhaps in post-treatment and let’s look at social distancing measures or other restrictions, are those different for patients versus the general population?

Dr. Shaji Kumar:

No, I think the proportions are the same, I think the social distancing and the masking should continue to be observed the same way, and I think the only other word of caution I think may be particularly relevant for the cancer patients would be, again, trying to avoid again those kind of being outdoors and larger groups of people, even if when you maintain the social distancing, try and not do that. The outdoors are probably a little better than smaller indoor gatherings, and it’s mostly the common sense proportions, and I think the cancer patients are probably more tuned to this because they have been following some of those things even before the COVID came on and post-vaccination, I would recommend that these steps don’t change at all, partly because we gain for a given person, we don’t know how robust the immune response that those patients have after the vaccination and the lack of good testing to say that, okay, now you’re fully vaccinated, your response is great, you don’t need to worry about getting infected.

Mary Leer:

Wow, thank you so much. That’s so helpful. I’m going to shift to vaccine hesitancy. This is an important topic for many. Drug development takes years, sometimes decades. Can you speak to those who might be hesitant about the speed of vaccine development around COVID. I’ve heard this often from other people saying, “Well, they develop this so quickly, how can we trust it?”

Dr. Shaji Kumar:

Yeah, no, I think those concerns are quite valid, I think vaccines have always been a very controversial topic and not just COVID vaccination but even for childhood vaccinations. There have been long-standing concerns that some of those vaccinations may be responsible for some of the issues that we see in the children and even in the late adulthood. I think what we really want to get across is, again, taking that question apart, and there are multiple different aspects to it, one is the whole concept of how we created the vaccine so quickly, we kept telling everyone from the time that it started that it takes five to 10 years to develop a good vaccine, and now we have something in a year, so obviously that raises concerns amongst people. I think it’s just a testament to how far technology has come. In the past, we had to isolate the protein and use that protein to develop the immune response, and what has been really unique about the COVID situation has been the Pfizer vaccine and the Moderna vaccine, both of which uses a new technology called the mRNA-based technology. And this is something that has been developed over the past decade to decade-and-a-half, and I would say this is a platform that was perfect, just waiting for the right opportunity to come along.

And the COVID situation really presented that. And even though it was the speed with which this was developed, is just because the technology has come along so much and we can actually do that, and the second is how fast the clinical trials have been done, and I think that speaks to, again, the infrastructure that they have been developed over the years to rapidly develop and implement a clinical trial. So the clinical trials, both Pfizer and Moderna trials had 40 to 50,000 people enrolled in a quick phase and the community transmission that was happening at a very high rate. We could get these trials done in a very rapid manner, so the patients or the people who enrolled in this clinical trial the fact that they were not getting infected could be determined in a much, much faster fashion than what you would have done in the past with any of the other vaccines. So I think the technology is robust. The [COVID]  trials are very well-conducted and the end point in terms of efficacy has been very well-determined or very accurately determined.  And given the size of these trials and the number of people who have been a goal, I think we can feel fairly confident that the risk associated with this vaccine is pretty low, so you can argue that one of the risk of a particular side effect is only 1 in 80,000. So maybe to the 40,000 people enroll in the trial, they may not have adequate numbers of that and that was certainly a concern when they started vaccinating. And we just know a couple of days ago, there was a publication that looked at almost like 63 million vaccination doses that have been given, and overall the risk of vaccine related side effects have been very, very minimal.

So I think that should also boost our confidence.

But on the other hand, we all heard about what would happen with some of those vaccines and the blood clots, and I think that even though…yes, it is, as it is a risk. It is a very, very small risk. And the fact that you were able to identify them right away again, I think tells us that should there be rare side effects, you’re going to find it, and we are going to figure out the mechanics of why those side effects happen. And we’re going to figure out how to avoid those things.

So, I think the information flow is so fast and all the data related to vaccines and the side effects are being captured in a real-time fashion that we would be… You’d immediately be of avail of side effects should that happen.

Mary Leer:

Wow, that’s so reassuring. Thank you.

Jeff Bushnell:

Another question kind of along the same lines, doctor is the last few days, especially, it’s Vaccine hesitancy has really become sort of the issue to the potential of achieving herd immunity, and how can everybody in the medical community, you guys are facing those stuff in a different way, but the average person, how can we help overcome hesitancy and increase the people’s trust in the vaccine, and also increase the equitable distribution amongst all populations? Some populations are hesitant to take it, others have distance problems for being able to get it. What can we do to sort of push ourselves over the hill to get to that herd immunity?

Dr. Shaji Kumar:

Yeah, no, You bring up a very important point, and I hope we are in a much better place than many parts of the world right now because we have one of the few countries where a significant proportion of the people have been vaccinated, but we are not quite at the point where we can claim herd immunity, I think we still need to continue to pursue this, and I think the ideal goal is to get everyone who’s eligible to get a vaccine vaccinated. Now, you bring up some of the very important points, because even though vaccine hesitancy is a real problem, the underlying reason behind this is manifold, and the only way to tackle that is we have a multi-front approach that will take into account what is the reason behind it.

So for the people where it’s hard to get to populations which can live in far from the areas, it may be more the ability to use those vaccines, which does need the complicated storage, for example, the J&J vaccine. You only need one dose. It’s easy to store. So that may be one of the approaches to be taken. And people who believe that this is a vaccine is going to create side effects, or it’s part of some grand scheme to introduce a variety of things. I think it’s a person of education, and I think they really need to tell them what can happen with. Not really just to them, but the fact that if you continue to allow these infections to proceed on stuff, there are going to be increasing numbers of mutations, and that in turn is going to make the pandemic much more difficult to control in the long run. So it’s totally an individual benefit, but it’s on to the society’s benefit to have everyone be vaccinated. And then definitely, I think knowing that should anything unto it happen, there’s going to be medical care that’s going to be available to these individuals, and I think that’s also an important point, so who are near and dear to them is going to be the key thing.

Mary Leer:

Here’s a question many cancer patients are unclear about if antibodies are present or if I have tested positive before, there’s a wondering, “Should I still get the vaccine?”

Dr. Shaji Kumar:

Yeah, I know the recommendation right now is to go ahead and get the vaccine, partly because we don’t know the natural immunity from the infection, how long does it last. So it seems like the antibodies can start to wane off the infection. And again, we don’t have a lot of data on it, but it looks 3 to 6 months, it might start waning at least to the level that they can detect. Now, whether that is sufficient or even the undetectable levels is protective against a future infection, we don’t know. There have been some reports of people getting a second infection even though they have been infected before again, scattered reports, we don’t know how widespread that phenomenon is going to be, so given all these, I think the current recommendation would be to go ahead and get vaccinated. We generally tell people to wait for two to three months after the infection to go ahead with the vaccination.

Mary Leer:

Alright, thank you

Jeff Bushnell:

Should people… Is the idea of pre-screening, especially for cancer patients, maybe who may be at risk, I guess, to see whether they have antibodies or whatever, be an effective thing to decide which vaccine they should get? or I know, as I say, I was in the trial and they were very forthcoming to the participants with what the numbers were, and I was flabbergasted at how effective the vaccine was, it was just amazing to me, and that kind of information that I guess is not available publicly maybe it should be. Does it help to decide which vaccine you get? All I hear on the TV is get the first one you can. What are your thoughts on that?

Dr. Shaji Kumar:

Yeah, no, I completely agree with you. I think even those numbers may mean… You look at the Moderna and the Pfizer trials, and they said, now over 90 percent effective. Look at the AstraZeneca trials, you know, it’s like they recorded 70 to 80, 85 percent, and the J&J about 80 to 90 percent effective. Do these numbers mean much? It’s really hard to know, I think, partly because they have been tested in, again, different countries, different times, as the virus was continually changing its characteristics. So it does it mean… So one could argue that maybe the vaccines that were tested later on when this will be some of the mutants were already there might be more effective, but we don’t know.

I think at the end of the day, 80 versus 90 is not something we would decide a vaccine on. The fact that, yes, if something was only 10 percent effective versus 90 percent, it’s a probably different story. So based on the numbers we have seen, I would say whatever you can get to first, if you don’t want to get jabbed twice, maybe you go with something that goes, it’s only one dose, but that may be the only distinguishing factor here, but nevertheless, I think we have to just get the vaccination, the first vaccine that we can get our hands on.

Mary Leer:

So let’s hope there is some good that comes from the bad. Are there any noticeable trends born out of the pandemic that will be or could be a benefit to the future of cancer care or research?

Dr. Shaji Kumar:

Mary, That’s a very important question, and I think we always learn from adversity, and I think this is going to be no different. I think, especially when the pandemic hit back in the spring of last year, we all had to think fast on our feet to figure out how best to continue to tell about the best care for the cancer patients without compromising the care in any way. And we knew that bringing the patients back into the clinic at the same rate we did before the pandemic would expose them to significant risk for infection, so how do we continue with treatment? There have been very different things people have tried…one of them is to try and get the medications to patients at home. If they are on IV medications, they can be changed to something that’s comparable that can be given by mouth. We already did that for some patients. For some patients who used to come to the clinic very often, so we figure out is there a way for them to get some of those testing done in a clinic much closer to home, so they can avoid the travel, they can avoid being in a bigger city, they can avoid being in a bigger institution, again, reducing the risk of exposure, and then you look at those numbers and then decide on the next course of treatment. We converted many of the clinic visits to video visits. Nothing is as good as having the patient right in front of you, but this is the best we could do under the circumstances.

And I think that helped. So I think the clinical trials was a big problem because in many of those trials were done in a very rigid fashion with very little variability allowed within the protocols. And everybody loosened from the clinical trial sponsors, the pharmaceutical companies, the institutional review board, the investigators to try and build flexibility into those clinical trial structures to allow patients to continue to be on those trials, many of which are important and both helping. So what does that mean for the future? I think the video visits are here to stay, I think we will continue to utilize that and bring patients back to the clinic only when it’s absolutely needed. I think the clinical trials will have in-built flexibility so that patients can enroll on clinical trials remotely, they can potentially be given some of those medications at home, maybe it would be something where we would check into the patients on a regular basis to make sure things are proceeding in the right way. I think there are increasingly technologies that will allow the patients to communicate in real time with the care team and also provide many of the data that we need through iPads or iPhones, Apple watches, whatever we end up using.

So that is that I think that technology will rapidly take off in the next few years, I think. So I think a lot of the care of the patients with cancer in general, and particularly cancer patients, I think is going to look very different five years from now, because of all these things that we have always thought of and we thought, “Yeah it will take time to implement, it’s difficult.” Now we figure it out in a year. We can do a lot of those things.

Mary Leer:

Yeah, thank you.

Jeff Bushnell:

For the final question, you’ve given tremendous information here, Dr. Kumar w What’s the final takeaway for the average cancer patient and caregiver, how to get through this? What’s your bottom line for us all?

Dr. Shaji Kumar:

Bottomline is, I think Your cancer treatment comes first, let’s not compromise on it, let us do it as safe as we can by observing all the instructions in terms of social distancing, masking, avoiding gatherings, getting vaccinated, and make sure you keep connected with your care team. You don’t have to be in the clinic to do that. There’s a variety of different tools, I think every hospital has options to either through their medical records to message their care team, or set up video visits and so forth.

So we want to be in a state where it was before the pandemic in terms of your communications, but use the technology, so we can decrease the risk of exposure without compromising the quality of care.

Mary Leer:

Alright, well, thank you so much, Dr. Kumar, that you have just given us such valuable information, and I want to thank Jeff as well, and the Patient Empowerment Network for putting this together.

Jeff Bushnell:

Thank you, Dr. Kumar, appreciate it.

Dr. Kumar:

Thank you, Jeff.

How to Regain Self-Esteem and Body Confidence After Cancer Treatment

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Getting through cancer treatment is a huge accomplishment. The moment you’re finished with your final session, it can feel like you’re on cloud nine. You’ve done something incredible.

Unfortunately, it may not take long for those positive feelings to waver.

Cancer treatments are often intense and can cause noticeable changes to your body. While those changes are necessary to fight back against the disease, many can linger once treatment is done. That can leave you with low self-esteem. You might even start to struggle with mental health conditions like depression or anxiety1.

Whether it’s healing from major surgery, dealing with hair loss, weight fluctuations, or a change in your sex drive, it’s not uncommon for the after-effects of cancer treatment to make you see yourself differently.

So, how can you regain confidence in your body after your treatment journey is over?

Common Body Image Issues

Going through cancer treatment can make you feel strong on the inside, but lose confidence in your external appearance. Because both the disease and treatment can cause your body to change, it’s not uncommon for your physical appearance to affect your self-esteem.

If you’re feeling “off” after your treatment or you’re struggling with your self-confidence, it could be the result of how you see yourself when you look in the mirror. Some of the most common signs of body image issues are:

  • Your feelings about your body are affecting other areas of your life
  • You speak negatively/harshly about your image
  • You avoid seeing your own image as much as possible
  • You obsessively try to change your image with makeup/grooming

Unfortunately, we’re currently living in a period that makes it harder than ever to avoid your own image. If you’re working remotely, for example, you might be one of the 300 million people logging into Zoom meetings every day2.

The current remote culture has created some self-esteem issues of its own. Working from home can be beneficial for patients going through treatment or those in recovery. But, it’s not without its potential drawbacks.

Problems like Zoom fatigue and Zoom dysmorphia have come to the forefront for many people. Zoom dysmorphia, for example, is a condition that causes someone to develop self-image issues from looking at themselves on a screen. When you’re on Zoom meetings all day, it’s easy to start nitpicking your flaws or seeing things that others wouldn’t even notice. If you’ve recently gone through cancer treatment and are already dealing with body image issues, seeing a pixelated version of yourself on a screen can make matters worse.

So, what can you do if you’re struggling with any of these problems?

Explore Your Emotions

You might feel negative about having a negative image of yourself. After all, you just went through something life-changing and came out on the other side. But, one of the biggest mistakes you can make is ignoring how you really feel. By shoving your feelings aside, you’re putting yourself at risk for them to “bubble up” and explode later.

Instead, accept how you’re feeling. Accept the loss you’ve experienced when it comes to the way you used to look. It’s okay to feel sad or frustrated. It’s okay to grieve.

Once you’ve worked through those feelings, you can attempt to shift your mindset. Focus on the things you’ve been through and how they have made you stronger. What have you gained from this experience, and how have you changed positively?

If you’re having a difficult time focusing on the brighter side, lean on your support system. That can include:

  • Family members
  • Friends
  • Doctors
  • Support groups
  • Online forums

You can even talk to other cancer patients for advice about self-image3. The important thing is to remember you’re not alone. You undoubtedly had support with you throughout your treatment. That doesn’t just disappear because you’re cancer-free. Keep leaning on that support for help with your mental health and advice on how to keep moving forward.

Focus On What You Can Change

When it comes to your physical appearance, there are things you can and can’t control.  For example, if you lost your hair during treatment, you can’t make it grow back any faster. But, you can opt for a wig, or choose to wear hats when out in public. If your skin became dull and dry, you can’t change it overnight. But, you can use creams and lotions to bring back hydration and elasticity. If you experienced weight loss, you can purchase clothes that fit better for now, and work on slowly regaining the weight over time.

By focusing on the things you can control, you’re less likely to get frustrated. Most image issues you’ll face after cancer treatment are temporary. It may take a long time to get back to normal. But, you can take comfort in knowing most of them aren’t permanent.

When it comes to physical issues like surgery scars, they will typically fade over time, too. You can help that process with different creams and body butter. But, it’s okay to accept the fact that you may always have a scar or two. Instead of looking at those scars as something “ugly” or embarrassing, consider the fact that you get to stand there and see them. You made it through something that not everyone else gets to. A surgery scar is a sign of strength and victory.

In addition to changing what you can and accepting what you can’t, regaining confidence can come from leading a healthy life. Practice self-care every day. Develop healthy habits that make you feel good about yourself, inside and out. Get enough sleep, work out if you feel strong enough, and take time to relax each day.

Your body has been through a lot. While it’s understandable to feel self-conscious at first, realizing what it’s done for you can make you more accepting and willing to love yourself again.

Sources:

  1. Cancer patients left to cope with mental health problems alone
  2. Zoom User Stats: How Many People Use Zoom in 2021?
  3. Self-Image, Sexuality, and Cancer

Cancer-Related Depression: What You Should Know

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An overwhelming 40 percent of people are projected to experience cancer at some point in their lifetime and of those patients, over 10 percent will suffer from depression related to their illness. There are a variety of reasons a person’s mental health can be impacted by cancer. Common factors are if the cancer is terminal or invasive, feeling a lack of autonomy or control over one’s life, feelings of guilt or shame for behaviors associated with cancer like smoking, loss of identity resulting from weakness, appearance changes, or loss of friends or a job.

The mental health of cancer patients is often less considered, but its impact on the progression of cancer is strongly considered by doctors, with over 70 percent of oncologists believing that mood affects the progression of cancer.

Wherever you are in your journey with cancer –– if you were recently diagnosed, if you’re a caregiver, relative, or friend of a patient, or if it is a long part of your past –– it’s important to consider mental, not just physical, health. Even cancer survivors can develop depression after they are declared cancer-free. Fear of recurrence, permanent changes to the body and overall health, and lack of community or understanding take a huge mental toll on patients.

For a variety of reasons, it’s important to recognize symptoms of depression in yourself or loved ones who live with cancer. Keep reading to explore methods of acknowledging and alleviating depression related to cancer.

Common symptoms to look out for:

  • Loss of interest in things you used to enjoy
  • Irritability
  • Frequent crying
  • Lack of motivation
  • Feelings of worthlessness
  • Sleep changes
  • Fatigue
  • Appetite loss
  • Decreased libido

Methods of coping

Get professional help

As with any serious mental health issue, it is best to see a mental health professional. A mental health professional such as a therapist or a psychiatrist can help you view your mental health holistically, not just in the context of cancer, and help determine triggers and various treatment plans individualized for each patient.

Although cancer patients may feel overwhelmed with doctor’s appointments, there are increasingly more flexible options like online psychiatry services that incorporate treatments like talk therapy with the option to prescribe an antidepressant if needed.

Surround yourself with community

Feeling supported by friends and family in difficult times is extremely important for one’s well being. In fact, it has been found that a lack of friendship is a major diagnostic criterion for a variety of mental health issues.

If you have lacked friendships or support in the past, cancer may be an opportunity to bond with those with similar experiences. There are often a variety of cancer support groups associated with charities and hospitals that help cancer patients establish community and social assistance. Some even organize retreats and wellness clinics so it is worth looking into the resources available to you. Your oncologist, for example, may be able to point you in the right direction.

If you find it difficult to keep up with your friendships, or if you lack the energy to socialize in a way that feels comfortable, pets are also found to be extremely therapeutic in the way that they provide a sort of social support. For example, dogs can provide a sense of companionship and help lower stress levels by increasing “feel-good” hormones like oxytocin in their owners. Pets like dogs even help promote a healthy lifestyle by walking them and helping their owners socialize with other dog owners at places like a dog park. This is an especially beneficial option for introverted individuals.

Make an effort to laugh

Laughter is also therapeutic, and luckily also extremely accessible. Whether it be with family and friends or by watching a comedy on Netflix, laughter can counterbalance the somberness of cancer treatment and recovery. Laughter is even considered a serious treatment for stress and depression in the medical community. However, it’s not something that can be prescribed, it has to be actively sought.

Be aware of the content you’re consuming and ask yourself whether it lightens or dampens your mood. When you pick a movie to watch or a book to read, if not a comedy try and choose something lighthearted. Ask your family and friends to send you pictures of their pets or funny videos. Go after whatever makes you happy and promotes laughter in your life!

It is completely natural to experience overwhelming emotions and even develop depression while experiencing, and even long after, cancer. Cancer is not only a diagnosis but an experience that changes nearly all aspects of a person’s life. Whether it be you yourself or a close friend or family member, it is important to recognize not just the physical, but the mental health implications of cancer. There are many ways to support someone who is experiencing cancer-related depression. Try experimenting with different options to see what works for you.

Dealing With A Cancer Diagnosis During Your Pregnancy

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Every year, nearly 3.7 million babies are born in the USA. While pregnancy and the subsequent birth of a baby is nothing short of a joyous occasion for countless women, there are many others who face various obstacles throughout their pregnancies. Apart from potentially contracting urinary tract infections, hypertension, and gestational diabetes, approximately one in every 1000 women will receive a cancer diagnosis during their pregnancy. Although the risk of being diagnosed with cancer during pregnancy is quite low, the thought of having to fight a potentially fatal disease while awaiting the birth of your baby can be devastating. Apart from placing your trust in your medical team, it is also vital to educate yourself as much about your condition as you can, and do everything in your power to keep you and your baby as healthy and comfortable as possible.

Ask Questions About Your Treatment

Although your medical team will undoubtedly discuss your treatment options with you, it is important that you ask as many questions as you need to fully understand how the treatment will be administered, as well as the benefits and risks associated with it. Some courses of treatment are safer to administer during pregnancy. Surgery is generally the safest treatment, as there is typically limited risk to the fetus. Chemotherapy can also be safely administered during the second and third trimesters. Various bodies of research have found that children who were exposed to chemotherapy while in the womb do not present more health challenges than children who weren’t. It is important to note that you will not be able to breastfeed if you are undergoing chemo, as it may be harmful to your baby.

Be Mindful of the Effects of Your Cancer on the Fetus

Despite in-depth research by some of the world’s top scientists and doctors, it is very hard to predict to what exact extent a cancer diagnosis will affect an unborn fetus. In most cases, cancer itself has no effect on the fetus. There is, however, a possibility that specific cancers such as leukemia and melanoma can spread from the mom to her unborn baby. Your oncologist will be able to provide greater insight into the possibility of this transmission occurring, and also what steps will be taken if it does occur. Once your baby is born they will immediately be checked for early signs of cancer to provide them with the best possible chance of full remission in case of a positive diagnosis.

Focus on Personal Comfort

Personal comfort becomes somewhat of a rare commodity during pregnancy, and especially in the final trimester. As your baby’s movements become stronger during the last few months of your pregnancy, you may also start feeling increasingly uncomfortable. In addition to any pain and discomfort associated with your cancer diagnosis, you may also experience backache, increased heat burn, and overall restlessness while lying down in bed. A warm bath and gentle massage may help to ease back pain, while avoiding certain foods and eating smaller portions can relieve heartburn considerably. Investing in a maternity pillow may be a saving grace if you are unable to comfortably lie down. As these pillows provide support in all the right places for pregnancy, it becomes increasingly easier to relax and drift off to sleep.

Reduce Your Stress Levels

A certain degree of stress is normal during any pregnancy. The excessive stress brought on by a cancer diagnosis can, however, be detrimental to your own health and that of your baby. According to Dr. Ann Borders from the Division of Maternal-Fetal Medicine at Evanston Hospital, severe, chronic stress during pregnancy may result in developmental concerns in babies. There are a number of things a pregnant cancer patient can do to reduce stress. This includes doing regular light exercise, engaging in meditation and other mindfulness practices, and spending time doing things you enjoy, such as reading a book or listening to music. If your stress and anxiety are getting the better of you, your medical team may recommend additional strategies to employ.

Manage Your Fatigue

The majority of pregnant women experience varying degrees of tiredness throughout their pregnancies. A cancer diagnosis can contribute to your tiredness in various ways. Apart from the increased fatigue you are undoubtedly experiencing wreaking havoc with your sleep, your cancer treatment can also leave you feeling increasingly lethargic. Rest as much as you can, and don’t be afraid to ask for help if you need it. Having someone assist you with shopping and preparing meals or offering to look after your children for a night can help you get the rest you need to replenish your energy levels. You may also benefit from a quality prenatal vitamin supplement, especially considering that up to 52% of women experience an iron deficiency during pregnancy.

Eat and Sleep Well

Following a nutrient-rich diet and getting enough sleep is pivotal to a healthy, enjoyable pregnancy. It becomes even more important when fighting cancer. According to the Sleep Foundation, sleep has the ability to help your body heal. It can also help ward off depression and decrease your risk for further medical concerns. Just as your body needs sleep to be healthy, it also requires nourishment. You can benefit both as a pregnant woman and a cancer patient from following a diet that is rich in nutrient-dense foods. Opt for fresh fruit and vegetables, lean protein, dairy, nuts, grains and legumes, and a variety of healthy fats. Steer clear of any processed foods, and limit your sugar intake as much as possible. Also, remember to stay well-hydrated at all times.

Being diagnosed with cancer during your pregnancy is something no one can ever adequately prepare for. Despite how devastating such a diagnosis may be, however, it is important to not only work closely with your medical team, but also make the necessary lifestyle changes that will help give you and your unborn baby the best chance at health and happiness.

3 Things To Know About Your Cardiac Health During Cancer Treatment

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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.

An Expert’s Take on Promising Myeloma Treatment and Research

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An Expert’s Take on Promising Myeloma Treatment and Research from Patient Empowerment Network on Vimeo.

 Myeloma research is advancing quickly. Dr. Joshua Richter, a myeloma expert, shares his excitement about emerging treatments in development.

Dr. Joshua Richter is director of Multiple Myeloma at the Blavatnik Family – Chelsea Medical Center at Mount Sinai. He also serves as Assistant Professor of Medicine in The Tisch Cancer Institute, Division of Hematology and Medical Oncology. Learn more about Dr. Richter, here.

See More From Engage Myeloma

Related Programs:

Myeloma Treatment Decisions: What Should Be Considered?

Myeloma Treatment: When Should a Clinical Trial Be Considered?

What Standard Testing Follows a Myeloma Diagnosis?

Transcript:

Katherine:

When it comes to myeloma research and emerging treatment options, what are you most excited about, specifically?

Dr. Richter:

So, I think the big thing that I’m excited about from myeloma that we’re on the cusp of is T-cell engagers and T-cell based therapies. And, essentially, we all have T cells in our body, and T cells are a part of our immune system. They attack bacteria, viruses, and cancer.

And one of the best cancer fighters that exists is our own immune system. And the old way of treating cancer and blood cancers like myeloma was just to give medicines that suppressed all of the immune system, the good and the bad. Now, we’re trying to be more precise, and there’s certain parts of the immune system that we don’t want down, we want up. So, they help attack the cancer.

And the two biggest technologies are something called CAR T and something called bispecific antibodies. CAR T stands for chimeric antigen receptor T cells.

And, basically, what that is is we collect your T cells, we engineer them in the lab to rev them up and target the cancer. And we can put them back into you and they attack the cancer, very exciting. And then we have something called a bispecific antibody that has two arms. And as we infuse this medicine into you, one arm grabs onto the cancer cell, the other arm grabs onto your T cell and makes that T cell activate and attack the cancer cell.

And a lot of these drugs are in clinical trials as well. So, we’re very excited about moving from, you know, just lowering everything, the good and the bad, to being more precise and saying, no, no, no. There are some cells that we want way, way up.

Katherine:

Right. Right. So, you’re – you’re being much more specific now.

Dr. Richter:

Mm-hmm.

What You Need to Know Before Choosing a Cancer Treatment

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What You Need to Know Before Choosing a Cancer Treatment from Patient Empowerment Network on Vimeo.

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What steps could help you and your doctor decide on the best treatment path for your specific cancer? This animated video explains how identification of unique features of a specific cancer through biomarker testing could impact prognosis, treatment decisions and enable patients to get the best, most personalized cancer care.

If you are viewing this from outside of the US, please be aware that availability of personalized care and therapy may differ in each country. Please consult with your local healthcare provider for more information.

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TRANSCRIPT:

Dr. Jones:

Hi! I’m Dr. Jones and I’m an oncologist and researcher. I specialize in the care and treatment of patients with cancer. 

Today we’re going to talk about the steps to accessing personalized care and the best therapy for YOUR specific cancer. And that begins with something called biomarker testing.

Before we start, I want to remind you that this video is intended to help educate cancer patients and their loved ones and shouldn’t be a replacement for advice from your doctor.

Let’s start with the basics–just like no two fingerprints are exactly alike, no two patients’ cancers are exactly the same. For instance, let’s meet Louis and another patient of mine, Ben. They both have the same type of cancer and were diagnosed around the same time–but when looked at up close, their cancers look very different.  And, therefore, should be treated differently.

We can look more closely at the cancer type using biomarker testing, which checks for specific gene mutations, proteins, chromosomal abnormalities and/or other molecular changes that are unique to an individual’s disease.

Sometimes called molecular testing or genomic testing, biomarker testing can be administered in a number of ways, such as via a blood test or biopsy. The way testing is administered will depend on YOUR specific situation.

The results could help your healthcare team understand how your cancer may behave and to help plan treatment. And, it may indicate whether targeted therapy might be right for you. When deciding whether biomarker testing is necessary, your doctor will also take into consideration the stage of your cancer at diagnosis.

Louis:

Right! My biomarker testing results showed that I had a specific gene mutation and that my cancer may respond well to targeted therapy.

Dr. Jones, Can you explain how targeted therapy is different than chemo?

Dr. Jones:

Great question! Over the past several years, research has advanced quickly in developing targeted therapies, which has led to more effective options and better outcomes for patients.

Chemotherapy is still an important tool for cancer treatment, and it works by affecting a cancer cell’s ability to divide and grow. And, since cancer cells typically grow faster than normal cells, chemotherapy is more likely to kill cancer cells.

Targeted therapy, on the other hand, works by blocking specific mutations and preventing cancer cells from growing and dividing.

These newer therapies are currently being used to treat many blood cancers as well as solid tumor cancers.  As you consider treatments, it’s important to have all of the information about your diagnosis, including biomarker testing results, so that you can discuss your treatment options and goals WITH your healthcare team.

Louis:

Exactly–Dr. Jones made me feel that I had a voice in my treatment decision. We discussed things like potential side effects, what the course of treatment looks like and how it may affect my lifestyle.

When meeting with your healthcare team, insist that all of your questions are answered. Remember, this is YOUR life and it’s important that you feel comfortable and included when making care decisions. 

Dr. Jones:

And, if you don’t feel your voice is being heard, it may be time to consider a second—or third—opinion from a doctor who specializes in the type of cancer you have. 

So how can you use this information to access personalized treatment?

First, remember, no two cancers are the same. What might be right for someone else’s cancer may not work for you.

Next! Be sure to ask if biomarker testing is appropriate for your diagnosis. Then, discuss all test results with your provider before making a treatment decision. And ask whether testing will need to be repeated over time to identify additional biomarkers.

Your treatment choice should be a shared decision with your healthcare team. Discuss what your options and treatment goals are with your doctor.

And, last, but not least, it’s important to inquire about whether a targeted therapy, or a clinical trial, might be appropriate for you. Clinical trials may provide access to promising new treatments.

Louis:

All great points, Dr. Jones! We hope you can put this information to work for you. Visit powerfulpatients.org to learn more tips for advocating for yourself.

Dr. Jones:

Thanks for joining us today. 

This program is supported by Blueprint Medicines, and through generous donations from people like you.

The Best of 2020

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As 2021 begins, we would like to take a moment to highlight a few of our most popular posts from 2020 and to thank the people who contributed to the popularity of these posts. We cannot thank the authors and organizations enough that have contributed to make 2020 one for the books, even during a trying year. Your efforts to Patient Empowerment Network are greatly appreciated!

January

Patient Profile: Perseverance and Positive Thinking Helped This Young Mother

Stage IIB Hodgkin Lymphoma patient, Lindsay, shares her cancer journey from searching for a diagnosis to adjusting to her new mantle of ‘cancer survivor’.

10 Body Signals Warning Health Problems

We should always be aware of what our body is trying to tell us. Here are ten ways our body is signaling that we should be more concerned with our health.

February

How Can You Best Support A Friend With Cancer?

What happens when someone close to you has been diagnosed with cancer? Here are some tips and advice to be the most helpful to cancer patients.

Confused About Immunotherapy and Its Side Effects? You Aren’t Alone

Patients need to be aware of the side effects of immunotherapy and vigilant in addressing them with their doctor as they can signal complications.

March

Practicing Self Care In The Time of Coronavirus – How To Mind Your Mental Health And Well-Being During Covid-19

While this is naturally a worrying time, there are many things we can do to mind our mental health and boost our immunity and well-being at this time. In this blog, you will find tips to help you navigate your way through this time of global crisis.

Health Fraud Scam – Be Aware and Careful

This blog explains what healthcare fraud is and provides tips to help you avoid falling victim to these scams.

April

Cutting Through the Panic in a Pandemic

A list of trusted sources to help you cut through all the information that is being share online about the coronavirus pandemic.

Fact or Fiction: Finding Scientific Publications Infographic

This infographic from our PEN Powered Activity Guide shares her tips for finding and understanding scientific publications.

May

Cancer, COVID, and Change

Cissy White gets used to her new normal dealing with having ovarian cancer during a pandemic, and the challenges and benefits that presents.

Diversity in Clinical Trials Benefits Everyone

It is critical that minority groups are included in clinical trials because, as the broader population, their data will affect the outcome of precision medicine for everyone.

June

Social Determinants of Hope

Casey Quinlan explains that everyone’s social determinants of health have been impacted by COVID19, but she is seeing strong signals of hope.

Music as Medicine: The Healing Power of Music

For cancer patients, music can be a powerful therapeutic tool in coping with a cancer diagnosis and treatment. Here is a list of some crowd favorites.

July

Dealing with a Cancer Diagnosis During COVID-19

There’s never a good time for a cancer diagnosis, especially during a global pandemic. Here are some recommendations from cancer treatment experts.

Quotation Inspiration: 10 Quotes to Inspire, Motivate and Uplift Cancer Patients

A list of 10 quotes and messages of hope and inspiration from patients that can bring you that much needed boost in your day.

August

Turning Your Home Into a Sanctuary

These days we are spending more time at home, so you need to feel like your happy place. Turn your home in a sanctuary in 5 simple steps.

Oncology Social Worker Checklist

Oncology Social Worker, Sara Goldberger, MSSW, LCSW-R, shares her checklist for resiliency during the time of a global pandemic.

September

The Nitty Gritty on Care Partnering

Casey Quinlan provides a short checklist that can be used in any patient-with-a-bedside-care-partner situation.

Are Cancer Survivors More Susceptible To Respiratory Illnesses When Air Quality Is Poor?

A recent study published examines the connection between air pollution and respiratory health among cancer survivors.

October

Patient Empowerment Revisited

In this Part 2, we’ll look at the role of peer to empowerment and explore whether the term “empowerment” is even the right term to use.

The Power of Journaling During Cancer Treatment

This article is meant to help cancer patients understand just how much journaling can help them emotionally and physically during their treatments.

November

The Caregiver Impact: A Vital Part of Healthcare

Network Managers, Carly Flumer and Sherea Cary, team up to discuss the importance caregivers and some quick tips for caregivers.

5 Ways a Patient Portal Can Improve Your Health Care Experience

This blog shares 5 helpful tips for utilizing your patient portal to the fullest.

December

“Wait, There’s a Good Cancer?”

Carly Flumer shares her thyroid cancer diagnosis story and what it’s like being told you have the “good” cancer.

Chronic Myeloid Leukemia (CML) Patient Profile

A patient story from a chronic myeloid or myelogenous leukemia (CML), an uncommon cancer of the bone marrow, patient.

Metastatic BC Research: How Can You Advocate for the Latest Treatment?

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Metastatic BC Research: How Can You Advocate for the Latest Treatment? from Patient Empowerment Network on Vimeo.

What do metastatic breast cancer patients need to know about the latest research news? Dr. Megan Kruse shares highlights from the 2020 San Antonio Breast Cancer Symposium (SABCS), along with her advice for advocating for the right testing to help guide treatment options.

Dr. Megan Kruse is a Breast Medical Oncologist at the Cleveland Clinic. More about this expert here.

See More From INSIST! Metastatic Breast Cancer

Related Resources:

 

What Could Advances in Breast Cancer Research Mean for You?

How Can You Advocate for the Best Breast Cancer Care?

Factors That Guide a Metastatic Breast Cancer Treatment Decision

 

Transcript:

Dr. Kruse:                   

At this year’s San Antonio Breast Cancer Symposium, there were a few interesting presentations about the treatment of first-line metastatic triple-negative breast cancer that I think patients should be aware of.

Two of the presentations centered around trials that were presented in the past. Those reporting, patients reported outcomes from the IMpassion 130 study, which looked at chemotherapy for metastatic triple-negative disease plus the immunotherapy atezolizumab. And then, there was also an update on the results from the KEYNOTE-355 study, which was a study again of chemotherapy for metastatic triple-negative patients in combination with pembrolizumab, a different immunotherapy. And both of these studies showed that there was benefit for women in certain sub-groups of triple-negative breast cancer when looking at addition of immunotherapy.

And so, what I’d like to draw patients’ attention to with these presentations is that you have to be aware of if you fall into one of these categories so you know if you’re a candidate for the particular type of immunotherapy that can be added to chemotherapy. There are two different ways to test for if a patient is a candidate for immunotherapy and they are both tests that can be done on biopsies of metastatic or cancer recurrent sites in the body.

They can also be sent off of original breast cancer tumors. And what we now know is that for patients who do not have markers that suggest immune activation or where the immune system would be responsive to immunotherapy the addition of that extra therapy really does not help to improve cancer control over chemotherapy alone. And I think that’s a really important topic because everyone is very interested in immunotherapy, but it does have side effects of its own and it can actually be lasting side effects in terms of inflammation in organs like the liver, the colon, and the lungs.

And then, the third presentation that I’d like to bring up is the IPATunity study, which looked at the addition of a targeted therapy called ipatasertib to, again, chemotherapy for the first treatment of metastatic triple-negative disease.

And so, this is getting into an area of targeted therapy for metastatic triple-negative disease. And again, only looks at patients that have a particular marker that suggests sensitivity to this drug. And those are certain genetic markers, predominately changes in a DNA marker called PIK3CA. In this study, we actually found that there was no benefit for the targeted therapy added to chemotherapy for patients that had that genetic mutation, which was different than what was seen in earlier studies of the same combination. So, I think there’s more work to be done and it’s probably too early to say that this targeted therapy will not be used in treatment of metastatic breast cancer.

But what all of these research studies show together is that metastatic triple-negative cancer is not really just one disease. It’s very clear that within that one name, there are multiple different patient types and tumor types that need to be cared for differently.

And so, again, I think the theme from these abstracts and these research presentations is that we have to look into the right therapy for the right patient at the right time, which largely involved DNA-based testing.

So, when patients are thinking about their treatment options and how to best help with their providers about what treatment options exist for them, I think it’s important to recognize the type of testing that may be advantageous in your cancer type.

And so, for all metastatic breast cancer patients, we really recommend that they’ve had genetic testing to look for DNA changes like BRCA mutations that will lead to treatment options. For metastatic triple-negative disease, it’s important to make sure that you’re providers are testing for PDL1, which would make you a candidate for immunotherapy. And then, the more we learn about clinical trials, the more we have options for patients that have had drug-based DNA or genome-based testing. So, that’s an important term for patients to become familiar with is genomic testing.

And I think when you bring that up with your providers, they’ll know what you’re talking about and they’ll know that what you’re potentially interested in is new targeted therapy for the cancer that may either come in combination with chemotherapy or as a standalone treatment option. If you don’t have those options that are available, and FDA approved basis for regular routine patient care, there is always the option of clinical trials.

And so, if that is something that you’re interested in, genomic testing will often open the way. So, I think as you’re writing notes when you’re talking to your providers, you might wanna jot down whether or not you’ve had genetic testing and whether or not you’ve had genomic testing in the past, as both of those things will help potentially address all of your treatment options.

I’ve very hopeful about the research that is going to lead to new developments for breast cancer treatment in the next few years.

I think what we’ve seen both at this San Antonio Breast Cancer Symposium as well as other conferences in the recent past has been a lot of focus on finding the right treatment for the right patient at the right time. And so, patients seem to be very interested in finding out this information. They often come to clinic armed with the most recent data, which allows their providers to have really informed discussions about what the best treatment might be. And to talk about if the new treatments are not great right now, what treatments might look like in the future.

I think the other thing that’s encouraging about the research that we’ve seen presented at this conference is that some of these trials are very, very large. For example, the RxPONDER trial was a trial of over 9,000 patients. And I really think that’s amazing to get that many patients interested in research that may not directly impact their patient care but will impact the care of others moving forward.

It’s just a sign that our breast cancer patients are empowered, and they want to make a difference in the scientific community as a whole.

 

Breast Cancer Research News: SABCS Conference Highlights

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Breast Cancer Research News: SABCS Conference Highlights from Patient Empowerment Network on Vimeo. 

Expert Dr. Megan Kruse shares highlights from the 2020 San Antonio Breast Cancer Symposium (SABCS). Dr. Kruse provides an overview of what this news means for early stage breast cancer patients, along with her optimism about the future of breast cancer research and treatment.

Dr. Megan Kruse is a Breast Medical Oncologist at the Cleveland Clinic. More about this expert here.

See More From The Pro-Active Breast Cancer Patient Toolkit

Related Resources:

Are You Prepared for Your Breast Cancer Appointment? Expert Tips

 

Transcript:

Dr. Kruse:                   

The San Antonio Breast Cancer Symposium is a national meeting with international presence that combines all of the latest data from research on breast cancer topics. It involves clinical research, basic science research, a lot of patient, and patient advocate support.

And the idea here is to bring together all the different disciplines that are involved in breast cancer patient care and do the best information and knowledge sharing that we can each year.

This year’s San Antonio Breast Cancer Symposium brought us a lot of interesting research focusing on early-stage breast cancer patients. I think the most important presentations that were given had to do with the treatment of high-risk lymph node-positive hormone receptor-positive breast cancer patients. And these were really across three abstracts. The first abstract of interest was the Monarch E study, which looked at high-risk women with hormone receptor-positive HER2-negative breast cancer and optimizing their medical therapy.

So, these patients are typically treated with anti-estrogen therapy and the idea of the research that was presented was if the addition of a targeted medication called abemaciclib or Verzenio could help to improve outcomes for women in this population. And what the trial found was that for women who took their anti-estrogen therapy for the usual length of time but added the abemaciclib for the first two years of that anti-estrogen therapy that there is actually an improvement in cancer-free survival time or an improvement in cure rates. And this was important because these women may not benefit from chemotherapy, as we’ll talk about in another abstract.

An addition research presentation that was given that goes alongside of the monarch E study was that of the Penelope B study. And the Penelope B took a similar population to what was studied in Monarch E. So, again high-risk women with lymph node-positive, hormone receptor-positive, HER2-negative breast cancer; however, in Penelope B, all of these patients had received pre-surgery chemotherapy.

And in order to qualify for the trial, the patients had to have some cancer that remained in the breast or the lymph nodes that was taken out at the time of their surgery. So, these are patients clearly in which chemotherapy did not do the whole job in terms of getting rid of the cancer. And again, the idea here was to add a second targeted therapy to the endocrine therapy to see if that would improve cancer-free time for patients in this population. The difference in this study was that the partner targeted therapy that was used was a drug called palbociclib or Ibrance.

And the drug was actually only used for one year in combination with endocrine therapy rather than two years as was used in the Monarch E study with abemaciclib. Interestingly enough, the Penelope B study was a negative study, meaning that it did not improve the cancer-free survival time for women who took the endocrine therapy plus targeted therapy compared to women who took the endocrine therapy alone.

So, I think that these are two interesting studies that one should look at together. And clearly, may impact what we do for the treatment of high-risk hormone receptor-positive women moving forward. The third abstract that I’d like to touch on that I think was important for women with early-stage breast cancer is the RxPONDER study, also known as SWOG 1007. And this study again was looking at lymph node-positive, hormone receptor-positive HER2-negative breast cancer patients and seeing if the addition of chemotherapy helped to improve their cancer-free survival compared to anti-estrogen therapy alone.

And so, in this study, while the study population was all women with early-stage breast cancer, meeting the one to three lymph node-positive criteria, you really have to break the results down into the results for pre-menopausal women and the results for post-menopausal women.

Because overall the study really showed no significant benefit to chemotherapy on top of endocrine therapy for women in this population; however, we did see that there was a clear benefit for women who were pre-menopausal. So, the women who had no benefit from chemotherapy were largely those who were post-menopausal, while those who were pre-menopausal derived extra benefit from chemo on top of anti-estrogen therapy. And that benefit depended on what the Oncotype recurrent score was.

With women that had the lowest of the recurrent scores having a chemo benefit of about three percent going up to over five percent for women who had Oncotype recurrent scores in the mid-teens to 25 range. In both of these groups, women who had Oncotype scores of 26 or above would have chemotherapy as per our standard of care.

So, I think that this abstract is important because in the past women who had lymph node-positive breast cancer generally received chemotherapy no matter what. More recently we’ve understood that not all of these cancers are created equal and that some cancers may not actually have benefit from chemotherapy in terms of improving cure rate. So, this study is a big step forward to help individualize and specify the treatment for women with lymph node-positive, hormone receptor-positive, HER2-negative early breast cancer.

I’ve very hopeful about the research that is going to lead to new developments for breast cancer treatment in the next few years.

I think what we’ve seen both at this San Antonio Breast Cancer Symposium as well as other conferences in the recent past has been a lot of focus on finding the right treatment for the right patient at the right time. And so, patients seem to be very interested in finding out this information. They often come to clinic armed with the most recent data, which allows their providers to have really informed discussions about what the best treatment might be. And to talk about if the new treatments are not great right now, what treatments might look like in the future.

I think the other thing that’s encouraging about the research that we’ve seen presented at this conference is that some of these trials are very, very large. For example, the RxPONDER trial was a trial of over 9,000 patients. And I really think that’s amazing to get that many patients interested in research that may not directly impact their patient care but will impact the care of others moving forward.                                   

It’s just a sign that our breast cancer patients are empowered, and they want to make a difference in the scientific community as a whole.

 

How Can You Advocate for the Best Breast Cancer Care?

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How Can You Advocate for the Best Breast Cancer Care? from Patient Empowerment Network on Vimeo.

Breast cancer expert Dr. Julie Gralow explains how you can advocate for the best metastatic breast cancer care, through speaking up, utilizing care team members and taking key steps to achieving better care.

Dr. Julie Gralow is the Jill Bennett Endowed Professor of Breast Medical Oncology at the University of Washington, Fred Hutchinson Cancer Research Center, and the Seattle Cancer Care Alliance. More about this expert here.

See More From INSIST! Metastatic Breast Cancer

Related Resources:

How Genetic Mutations Affect Metastatic Breast Cancer Disease Progression and Prognosis

Factors That Guide a Metastatic Breast Cancer Treatment Decision

What Could Metastatic Breast Cancer Genetic Testing Advances Mean for You?

Transcript:

Katherine:                  

For patients who may be hesitant to speak out for themselves and advocate for their own care and treatment, what advice do you have?

Dr. Gralow:                

You have a whole team who’s behind you, and I’m the MD on the team, but I’ve got a nurse practitioner, and a nurse, and a scheduler, and a social worker, and a nutritionist, and a physical therapy team, and financial counselors. I’ve got a whole team who works with me. And so, a patient might be hesitant to speak up during the actual appointment with their physician. It’s a short amount of time. I would recommend come into it with written-down questions because things go fast. You don’t get a lot of time with your doctor.

Things go fast, but don’t come in with 25 questions, either. Pick your top few that you want to get taken care of this visit because if you come in with 25 or 30, you’re going to lose the answers to most of them. Maybe bring somebody with you who’s an advocate and a listener for you who could be taking notes, so you can process and you don’t have to write it down, or ask if you can record it. It’s really important if you’re newly diagnosed or maybe there’s a progression and you’re going on a new treatment. That’s okay too.

But, I would also say you have a whole team behind you, so sometimes, if you don’t have time or if you’re hesitant to speak up in your doctor’s visit, you can ask the nurse, or maybe you can ask the social worker for help, even. See if there’s support groups around.

Interestingly, we’ve got a peer-to-peer network where patients can request to talk to somebody else who’s matched to them by some tumor features, and their stage, and things like that. Maybe finding somebody else who’s gone through something similar, and somebody independent to talk to instead of relying on your family.

It can also be really helpful to talk to a therapist or a psychologist about your fears, and sometimes, you want to be strong for your family, strong for your children and all, but you need a safe space with somebody that you can just express your fears and your anger if that’s what’s going on, or your depression or anxiety to while you’re trying to hold a strong face for others in your family. So, I would encourage patients to look at who is the whole team and talk to the other members of the team as well, and sometimes, they can help advocate.

Also, find somebody who might be able to come to your appointments with you, somebody who will help you advocate or remind you – “Didn’t you want to ask this question?” – or be another set of ears that you can process it with afterwards.

Katherine:                  

Dr. Gralow, we’ve covered a lot of useful information today for patients. Thank you so much for joining us.

Dr. Gralow:                 

Thank you, Katherine.

Katherine:                  

And, thank you to all of our partners. To learn more about breast cancer and to access tools to help you become a proactive patient, visit powerfulpatients.org. I’m Katherine Banwell.

Empowering Ourselves Forward: Applying Skills to Our Cancer Journey

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During the pandemic, all of us have had to do some adjusting, some more than others. As cancer patients, we recognize the “new normal” everyone else is experiencing. While this can be detrimental, it can also be seen as somewhat gratifying. The non-cancer world finally understands what we’ve gone through and/or are going through on a daily basis and for the rest of our lives. Yet we’ve all learned new skills and coping mechanisms to make the best of our situation:

Virtual Appointments (Telehealth)

By now, the majority of patients have experienced at least one telehealth appointment where we see a doctor, NP, PA, etc. virtually. Whether this a completely new experience or not, there are many ways in which we can benefit from these appointments, which, hopefully, continue into the future.

What can be applied in the future:

  • Writing down a list of questions before your appointment so that nothing is missed
  • The feeling of comfort with your health care professional, especially if they weren’t in a white coat. They’re humans just like us
  • Asking questions when you don’t understand something – there is time!
  • The importance of having a caregiver as a second set of eyes and ears

Being Active

Gyms were closed (and some still are) for a long period of time, which forced us to be creative in being active.

What can be applied in the future:

  • If you watched YouTube videos or downloaded fitness apps, continue to use them to apply those movements to your routine
  • If you tried free classes offered by a local studio or gym, see what these places offer in-person
  • For motivation, grab a family member of friend to keep you accountable

Mindfulness

Perhaps the hardest part of going through the pandemic is the mental aspect, especially for cancer patients who are considered more vulnerable.

What can be applied in the future:

  • Continue using apps and YouTube videos to guide you through meditations
  • Keep a journal to write down your feelings
  • Set intentions at the start of each day
  • Remember how far you’ve come and what you can be grateful for

Family and Friends

Social distancing and wearing masks were suggestions (and in some states mandatory) to help stop the spread of the virus. This led to family and friends not being able to see one another, often for months. What’s more is the masks often concealed our expressions, making communication a little bit harder.

What can be applied in the future:

  • Spend more time with people who care about you, knowing it is possible for it to be taken away from you
  • Practice being in the moment, really focusing on what the person is saying and watching their facial expressions
  • Remember your own needs: people may now want to get together more often, but that may not be possible due to a number of factors, including your place in treatment, symptoms, and mental/physical/emotional states. Take the time you need for yourself

How Can Breast Cancer Genetic Testing Empower Women?

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How Can Breast Cancer Genetic Testing Empower Women? from Patient Empowerment Network on Vimeo.

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.

Dr. Stephanie Valente is the Director of the Breast Surgery Fellowship Program at Cleveland Clinic. More about this expert here.

See More From INSIST! Metastatic Breast Cancer

Related Resources:

 

What Should You Know About the Role of Surgery in Breast Cancer Treatment?

How Genetic Mutations Affect Metastatic Breast Cancer Prognosis and Treatment

What Could Metastatic Breast Cancer Genetic Testing Advances Mean for You?

Transcript:

Dr. Valente:                

So, genetic testing in this day and age is really empowering to a lot of women. So, it allows women to take control of their health from the beginning. So, if somebody has a strong family history of breast cancer, and that woman doesn’t have breast cancer but wants to know if she’s at an increased genetic risk for developing breast cancer in her lifetime – Knowing that risk and if a gene is identified, that woman could undergo high-risk screening.

So, saying if she develops breast cancer, it would be caught early, and she can go into a high-risk program. Or she can elect to prophylactically – meaning before cancer – remove her breasts. That would be both of the breasts with a mastectomy – Again, with or without reconstruction. And so, that decreases the risk.

Nothing in life is 100%. But it essentially decreases the risk of getting breast cancer. Some of the genes, like the BRCA gene – that’s a very common gene – is a 60% to 80% lifetime risk of developing breast cancer. And so, that would take that lifetime risk down to about 5% risk of developing breast cancer. And so, that’s empowering for a lot of women. And so, some women do elect to have that procedure.

The other thing for genetic testing is that for women who are diagnosed with breast cancer, sometimes the triple-negative breast cancer – finding out whether or not they carry a BRCA gene. We know that certain genes in triple-negative breast cancer allow patients to have better treatment outcomes with certain chemotherapy. So, the medical oncologist may opt to add a specific chemotherapy based on whether or not that patient actually carries a genetic mutation.