Tag Archive for: cancer patients

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. 

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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

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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.

Pain Management in Cancer: Avoiding Opioids

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Disclaimer: Sajjad Iqbal, MD is a retired physician and rare cancer survivor who routinely supports, mentors and guides other patients through their perilous cancer journeys. Any opinions, suggestions, or advice provided is solely from Dr. Iqbal’s perspective as a well-informed and knowledgeable cancer patient, not as a physician. The patients must discuss their health with their own doctors and follow their advice. 

During their long & tumultuous journey, cancer patients suffer from a multitude of very difficult and troublesome problems. Pain is perhaps the most common and debilitating one.  The pain can be caused by the cancer itself, as when it erodes the healthy tissues or when it attacks the nerves or nerve endings.  The pain of terminal cancer is regarded as one of the most severe pains known to mankind. Pain is also a very common side effect of virtually all of the cancer treatments, such as chemotherapy, radiation therapy, and the various surgical procedures, leading to devastating physical and emotional impact on the patient. 

Despite that, the medical community has historically done quite a poor job of managing the chronic pain and alleviating the suffering of the cancer patients. In the 1990s a renewed focus on pain management emerged and the pain assessment became one of the vital signs that the health professionals need to record for every patient. Unfortunately, while this did do some good to better manage the patients’ pain and suffering, it also led to the epidemic of opiate addiction. The emergence of the medical specialty of Pain Management (Algology) and overly aggressive and, at times, deceptive marketing by a greedy and unethical faction of the pharmaceutical industry led to an alarming increase in opioids prescriptions and thus the widespread addiction.  The opioids have an important role to play but were never meant to be used for chronic pain.  Opioids work best when given for a very short duration, such as after a tooth extraction or a surgery.  The patient is supposed to get off these medicines after a few short days. The risk of addiction that may be extremely low in the first few days of use, starts to increase exponentially beyond 2 weeks of regular usage. It stands to reason that, unless dealing with a short-term pain, the use of opioid painkillers for cancer patients makes very little sense.  

Some examples of such narcotic painkillers are Vicodin (hydrocodone), Percocet (oxycodone), Dilaudid (hydromorphone), Duragesic (fentanyl). All of these, and many other like these, are opium derivatives. Beyond the risk of addiction and tolerance, there are many other serious side effects, such as substantial physical and mental impairment, nausea, dizziness, and severe constipation that can lead to abdominal pain and rectal bleeding.  Opioids can also slow down breathing which can cause hypoxia (decreased oxygen supply to the brain).  An overdose of these drugs can lead to respiratory depression, coma and quite often, death.  In 2019, 50,000 people in the US died from Opioid overdose. Therefore, it is imperative that the doctors who treat cancer patients must find better pain management strategies with less side effects and without a risk of opioid addiction.   

There are a few strategies that patients can employ on their own to provide pain relief. Number one would be the better use of non-narcotic pain killers. Everyone is familiar with acetaminophen (Tylenol) and ibuprofen (Advil or Motrin). Neither one of those alone can provide adequate pain relief in severe pain associated with cancer, but the recent studies show that we can utilize these two simpler medicines much more effectively.  

These two medicines work very differently and are metabolized very differently in the body. They have very little in common with each other. Yes, eventually they both relieve the pain, but whereas acetaminophen works primarily on the pain receptors in the brain, Ibuprofen works primarily by reducing the inflammation at the site of the pain.  For years, the mothers of small children had been using a staggered schedule of both these medicines for the relief of their children’s pain or fever. There used to be a fear that you should not use both medicines together, however we now know that such fear is not rational.  The recent studies show that the two medicines, Ibuprofen & acetaminophen, are complimentary when used together because they have a different mechanism of action. The pain relief achieved by using Tylenol as well as Advil is greater than either of these medicines used singularly. In this case, 2+2 adds up to 5, rather than 4. You can find this date here.    

We also learned that for a severe & unrelenting pain, one can use a somewhat higher dose of either medicine.  In fact, one study showed that if you use the higher, but still less than the maximum allowed, doses of acetaminophen and Ibuprofen together you can achieve a pain relief that is equal to or better than the opioids. You can find that data here.

At the same time, the safety parameters were far better than the opioids. 

One must remember that this regimen of the higher doses used together is only recommended for the relief of a severe pain that fails to respond to the usual regimen.  Acetaminophen which is metabolized in the liver, should be used with a great degree of caution by any patient with a liver disorder.  An overdose of Acetaminophen (Tylenol) can cause liver failure and even death. 

 On the other hand, Ibuprofen is eliminated from the body by the kidneys and it tends to irritate the stomach.  Therefore, it should be used with caution by the patients with stomach ulcers or chronic kidney disorders. 

But for the average cancer patient suffering from severe & longstanding pain, both these medicines are very safe. The FDA allows 4000 mg as the highest daily dose for acetaminophen. However, some doctors prefer to cap it at 3250 mg in 24 hours.  This means 6-8 tablets of 500 mg extra strength Tylenol during a period of 24 hours. Acetaminophen is also available now in a 650 mg strength, which is marketed, as arthritis strength formula. There really is nothing extra in there for the arthritis relief. It’s just acetaminophen in a higher strength and cancer patients can certainly use that. So, two tablets of 650 milligram each of acetaminophen taken every eight hours will still keep you below the maximum allowed dose. It is worth emphasizing again that one should try the lower dosages first before reaching close to the maximum allowed dose. 

The maximum allowed dose of Ibuprofen is 3200 mg per day. Ibuprofen [Advil] comes in 200 mg tablets. There is also an 800mg prescription strength Motrin, which is the same medicine, Ibuprofen. Doctors often advise their patients with various degrees of pain to use three tablets of ibuprofen, 600mg total, at a time. Cancer patients can definitely use up to a maximum of 800 milligram of Ibuprofen every 8 hours, total 2400 mg in 24 hours, that will keep them well under the maximum allowed daily dose.  

So, if we use both these non-narcotic medicines properly and rationally, we can achieve a lot more effective pain relief without resorting to narcotics.  

In a nutshell, a cancer patient in severe pain who needs opioids can instead take up to a maximum of 2 tablets of 650 mg strength acetaminophen plus 600 to 800mg of Ibuprofen together and can repeat it every 8 hours. Then we’ll still have less than the maximum allowed dose of either one, and the studies show that the pain relief is equal or even better than with the opioids (Cochrane Reviews). I do not recommend that you should immediately go to that top dose as there are several options to try first. Start with lower doses and/or single drug and then go up in the doses if needed. You could take the higher dose of acetaminophen or you could take the higher dose of Ibuprofen, or you can combine them.  The pain may be bad enough at night that you need to take the maximum dosage of both medicines at night, but take the lower dose or just one medicine during the day time. The point is that you can manage your pain without resorting to opioids.  

The second strategy would be to use anti-depressants. The type of anti-depressants which are called SSRI, Selective Serotonin Reuptake Inhibitors, such as Escitalopram (Lexapro), Duloxetine (Cymbalta), and others have a beneficial effect on the chronic pains when used along with painkillers. These medicines work by increasing the level of the chemical serotonin in the brain. Serotonin is a neurotransmitter or hormone that is often referred to as a mood stabilizer or “the happiness hormone”. It protects the brain from harmful stimuli such as the pain signals.  When a patient in pain takes these medicines, the pain may still be there, but the misery factor goes down dramatically and they’re able to tolerate the pain far better than with the pain medicines alone. It is not uncommon for a patient with chronic pain to get off the opioids after the addition of SSRI antidepressants to the pain management regimen.  

 It’s important to remember that these medicines, Lexapro, Cymbalta, etcetera, require at least one week to start working. So, one cannot expect an immediate benefit. Lexapro (Escitalopram) is a simpler medicine and may be preferable for most patients, especially the elderly. The pain-relieving action of these drugs have not quite caught on yet. Generally, doctors treating cancer patients will reserve these medicines for the treatment of depression. I highly recommend that the cancer patients in severe and poorly controlled pain should seek their doctor’s opinion about the use of SSRI anti-depressants combined with the pain medicine. In fact, patients are strongly encouraged to discuss with their doctors all my recommendations prior to implementing them.   

Another useful strategy is to employ the alternative therapies such as meditation, prayers, yoga, other relaxation techniques, acupuncture, therapeutic massage.  

The last option is to ask for a referral to pain medicine specialist. A good and accomplished pain medicine specialist can do many things to assess the origin of pain and then determine how best to block it. There are procedures such as epidural injections, nerve blocks, nerve stimulations and many others. These modalities are especially useful for pain that may be coming from metastasis in the spine.  

 Ultimately, the important takeaway for cancer patients is that there are ways to improve pain outside of narcotics.  Talk to your doctor about some of these ideas and find what works best for your individual scenario as there is no “one size fits all” approach.  It may take a few different combinations of these treatments to find what works best for you, but hopefully these tips help improve your pain.

How Does COVID-19 Create Sleep Issues for Cancer Patients?

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Are you having sleep problems during the COVID-19 pandemic? A recent Swiss study showed that people’s sleeping hours are more regular during the global crisis, but self-reported sleep quality has decreased, according to Science Daily. Besides that, some groups like cancer patients are more likely to experience sleep deprivation during such challenging times.

There are several factors that might affect the sleep quality of people diagnosed with cancer. They include the diagnosis, cancer treatments, medical bills, and an uncertain future. Stress and anxiety due to coronavirus disease can also cause a disruption of everyday schedules. Sleep disorders themselves can worsen cancer symptoms, which creates a vicious cycle.

Cancer Survivors and Sleep Disorders

Getting a good night’s sleep can already be tough for cancer patients. Studies show that over three-quarters of people with severe disease have sleeping problems, according to the Cancer Treatment Centers of America.

The good news is today’s scientists and physicians have a better understanding than in the past about how sleep works and how to improve sleep quality.

Sleep provides many health benefits for overall physical, mental, and emotional health. This is especially true for people battling severe diseases like cancer. For example, it can boost your body’s immune system, which makes it more effective at fighting off cancer cells.

On the other hand, lack of sleep can have the opposite effect. This can weaken the immune system and slow down recovery from sickness or injury. Serious sleeping disorders can also create an imbalance of the cell-impacting hormones cortisol (stress hormone), and melatonin (sleep hormone).

Sleep: Its Influence on People Living with Cancer (video)

Other Effects

Besides affecting cancer cells and tumors, poor sleep can also have other negative effects related to:

  • Obesity
  • Diabetes
  • Heart disease
  • Heart attack/stroke
  • Mental health
  • Sleep

One theory is that melatonin might be the root cause that affects these health conditions and episodes. However, more research is needed. The body normally produces more melatonin at night as it gets dark outdoors and the human body winds down for rest and repair.

COVID-19 and Sleep Problems

Fun Fact: The acronym COVID-19 stands for corona (CO), virus (VI), disease (D), and 2019 (19). There are various possible factors related to the global epidemic that might affect people’s sleep, even if they haven’t tested positive for respiratory disease:

Anxiety, Stress, and Depression

The ongoing COVID-19 outbreak has become a global financial crisis that could cost the United States alone $16 trillion, according to the Los Angeles Times.

Quarantines, layoffs/furloughs, and school closures have caused stressful situations for people, and it’s even worse for those with severe diseases like cancer.

Even indirect factors like COVID updates have created more stress and duress. This is why it’s important to avoid reading or watching daily news after 7 PM or so. Negative news can affect your psyche and make it tougher to doze off at bedtime. A better option is good news.

Disrupted Daily Doings

The “new normal” during the ongoing pandemic might affect the quality of sleep. More stay-at-home time can cause wholesale schedules in daily schedules. That, in turn, can result in a sedentary lifestyle of sitting down and fewer gym workouts. This can negatively affect sleep unlike the option to make the right selection of mattress.

Blue Light

Studies show that blue light from sources like computer monitors, mobile devices, and fluorescent light bulbs can disrupt people’s sleep patterns.

Besides that factor, people might have more screen time during quarantines and lockdowns as they use their PCs/Macs, tablets, and smartphones to get COVID updates

and interact with friends and family. This can increase the risk of tossing and turning due to insomnia.

COVID-19, Sleep, and Cancer: It’s Complicated

As noted, several factors can negatively affect the sleep quality of cancer patients. When you add factors like a worldwide pandemic to the mix, this situation becomes ultra-complex.

Coronavirus and Sleep

The ongoing COVID-19 crisis isn’t just about the contagious virus itself, which makes it a whole lot more serious than a sleepless night when counting sheep and a warm glass of milk doesn’t seem to work.

Here’s the problem. Your ability to fall asleep and stay asleep during a pandemic probably isn’t related to the respiratory condition itself. Instead, it’s the effects of everyday life that have been turned upside-down because of the virus.

The effects of a global pandemic can include different factors related to work, school, and home. People can also experience emotional problems like worry, anxiety, and depression. Besides affecting your sleep schedule, it can even negatively impact your general health. So it’s a double-whammy.

COVID-19: The Importance of Sleep (video)

Stress and Sleep

While taking steps like picking a comfortable mattress can help you sleep like a baby, stress can have the opposite effect. In fact, insomnia can affect your ability to fall asleep and stay asleep, according to the Cleveland Clinic.

Stress triggered by stress hormones like cortisol can affect various biological processes, including sleep. If you’ve already received a cancer diagnosis, then a viral pandemic can make the situation even worse.

Pandemics and Sleep

The current pandemic can increase stressors and create an uncertain future due to the disruption of everyday life. This is due to extraordinary changes to daily life, including social distancing, virtual work, and home-schooling.

More Sleep for Cancer Patients During COVID Quarantines

Cancer survivors can take some basic steps to get more shut-eye during the current quarantines/lockdowns:

Sleep-friendly Environment

Dark, quiet, and cool rooms can all help to help cancer patients get a good night’s sleep during a global pandemic. It’s important to create a sleep-inducing environment that can help you fall asleep, and then cycle through the five sleep stages multiple times. If you dream you’re probably in ‘deep sleep.”

There are various steps you can take:

  • Minimize artificial lighting with options like night lights and dimmer switches
  • Clear your mind of everything and focus on falling asleep
  • End all daily news consumption before 7 PM
  • Use heavy curtains and blinds to block outside light
  • Avoid heavy meals, exercise, and caffeine/alcohol close to bedtime
  • Ditch all thoughts about the current COVID-19 pandemic
  • Use aromatherapy through sprays, diffusers, and massages at bedtime
  • Delay dealing with personal problems until the next day
  • Eliminate loud sounds and use sleep aids like noise machines
  • Do meditation, yoga, or light exercise to prepare for bedtime
  • Use self-mantras to help you doze off when your mind races
  • Lower the thermostat to about 65°F (18°C) to promote quality sleep

Conclusion

Dealing with the year-long COVID-19 pandemic can be tough enough. The predicament becomes even tougher for cancer patients who must also handle disease-related issues like cancer diagnosis, symptoms, and treatments. That’s why it’s so important for survivors to take steps to stay calm, boost their immune system, and get a good night’s sleep. Sleeping well can help you fight the coronavirus while you battle cancer.

Helpful Oral Care Tips For Cancer Patients

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Around 80% of individuals undergoing myeloablative chemotherapy experience oral complications and conditions, according to professor in cancer and palliative care, Munikumar Ramasamy Venkatasalu. It is crucial for individuals with cancer and their caretakers to know how to sufficiently address conditions that may occur in all areas of health. In this case, it helps to know several helpful oral care tips to help patients maintain proper oral health.

Understand Common Oral Complications

Cancer patients often have a high risk of developing oral complications, as radiation therapy can cause direct damage and break down to salivary glands and oral tissue, according to the National Cancer Institute. Understanding some of the more common oral complications like fibrosis, tooth decay, and periodontitis can help you to spot any early symptoms so they can be nipped in the bud before they become exacerbated with time. Requesting a list of oral complications and their common symptoms from a dentist can help keep information fresh and easily accessible.

Schedule Veneer Cleaning Every Six Months

Veneers are often seen as a good option for cancer patients who have struggled with oral complications. However, just because a person has veneers, it does not mean that they are immune to cavities and gum disease. While veneers — especially porcelain ones — can last an average of 15 to 20 years, proper care and regular cleaning sessions can ensure they last longer. So for those with veneers, scheduling a cleaning session every six months is a must. A cleaning appointment also gives a dental professional an opportunity to give their client an update on the current state of their oral health.

Eat Bone-Building Foods

A good way to keep up a patient’s oral health and stave off any chemotherapy side effects is by ingesting more bone-building foods, according to Cancer.net. Eating more foods that increase the presence of Vitamin D and calcium help keep jaws and teeth strong. Some of the foods that help make bones strong are dairy products and cruciferous vegetables. Other good bone-building foods are nuts like almonds and pecans, as they are a good source of magnesium and phosphorus. Seeds like chia, pumpkin and flaxseed are also good sources of calcium, fiber and omega-3 fatty acids. So not only will a patient’s oral health improve, but other aspects of their health will be boosted as well.

Maintain Brushing And Flossing Every Day

Naturally, the best way to keep oral health up is by relying on good habits like brushing your teeth at least twice a day and flossing regularly. It is recommended that a patient’s toothbrush be soaked in warm water to help soften any bristles to avoid bruising gums that have become sensitive because of radiation therapy. Ask a dentist for special instructions on how to brush and floss to lower the risk of bleeding gums and infection.

Oral health is crucial to general health and overall quality of life. Therefore, cancer patients and their caregivers must be proactive in ensuring that good habits are maintained in order to keep away negative conditions. It is also recommended to keep in touch with the patient’s primary physician and dentist so that they may be able to catch any complications before they fully set in.

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.

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

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This month, I thought we could all do with a little quotation inspiration. When you’re dealing with cancer, some inspiring words can be just the thing to give you a daily lift.

Note this is not the same as saying that “thinking positive” is the best way to deal with cancer. While for some, a positive thinking mindset can help them cope, for many others, the tyrannical think positive brigade only makes us feel worse.

Thinking back on my own cancer experience, there were certain messages of hope and inspiration that I received which help bring some much-needed perspective to my situation.

So with the help of our community, I’ve compiled the following quotes and messages to inspire and uplift you today.

Julia (@juliabarnickle), turns to her own words of wisdom to get her through her various cancer experiences over the past twelve years. In particular this one: “Nothing in Life is worth worrying about.”

 

Nancy (@nancyspoint) also looks to her own words for motivation. “Be real. Be you. It’s enough,” she says.

 

Take a leaf out of Ilene’s (@ilenealizah) quotebook. “When inspiration moves to another neighborhood, I often reference poetry, especially Mary Oliver and Maya Angelou (And Still I Rise)” she says. “Yet I shiver in the cool winds of words whispered in history, my mind running wild as I open up my quotebook (notebook of quotes)‘ to add or to discover. I picked these randomly on purpose, and in no quantitative or qualitative importance of order:

 

“There is no greater agony than bearing an untold story inside you.” — Maya Angelou

 

“What lies behind us and what lies before us are tiny matters compared to what lies within us.” — Ralph Waldo Emerson

 

“If you can’t fly then run, if you can’t run then walk, if you can’t walk then crawl, but whatever you do you have to keep moving forward.”— Martin Luther King Jr.

 

“The knack of flying is learning how to throw yourself at the ground and miss.” —Douglas Adams

 

Sarah (@he4dgirl) shares with us a three-word quote from CS Lewis – one that I have turned to often myself: “Courage, dear heart.”

 

Another one of my favorites is from the author, Cheryl Strayed, who writes: “The place of true healing is a fierce place. It’s a giant place. It’s a place of monstrous beauty and endless dark and glimmering light. And you have to work really, really, really hard to get there, but you can do it. You’re a woman who can travel that far.”

 

Finally take inspiration from Cancer biologist, Triona (@NiTriona) and pass on some encouragement to another person today. Triona shares these words from poet and philosopher, John O’Donohue (Eternal Echoes) to remind us of the gift that encouragement bestows.

 

“One of the most beautiful gifts in the world is the gift of encouragement. When someone encourages you, that person helps you over a threshold you might otherwise never have crossed on your own.”

5 Technologies Shaping the Future of Healthcare

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From implants to self-diagnosis, innovation is growing in the medical industry, and can soon transform healthcare all together. Although technology has already evolved since the development of the microscope back in the 17th century, the health industry is still welcoming more advances to medical and surgical tools, as well as new ways to make effective medicines and vaccines.

In this article, we’ll take a look at the five ways that technology is pushing the medical industry to another level, and shaping the future of healthcare.

1. 3D-Printed Prosthetics

“Prosthetics are one of the most requested products in the medical industry, especially with amputee patients,” says Michael Keener, a business writer at Boom Essays and Academized. “And with 3D printing, it’s now easier to create prosthetic limbs, and make these products more accessible to people worldwide. Ever since the success of the 3D-printed mini heart, now 3D printers are a must-have.” 

2. Biosensing Contact Lens

Recently introduced by UNIST’s team of researchers, biosensing contact lens will be able to detect glucose levels in diabetic patients, whenever there are tears in the eye. Having built-in transparent electronics, the lens, fortunately, won’t bother people who wear them. Sounds amazing, right?

And although the lenses aren’t in the market yet, UNIST is hopeful that they’ll soon be available in the near future. 

3. Virtual Reality (VR)

VR is no longer reserved for video games. In fact, both patients and doctors can use VR to see what’s going on – whether surgeons are using it for noninvasive procedures, or patients want a virtual escape while they’re recovering from surgery in a hospital bed. 

In addition, VR software like Osso VR and ImmersiveTouch help future surgeons train for the real deal, and lets experienced surgeons and physicians perfect their operations and methods. According to a recent study from Harvard Business Review, VR-trained surgeons did around 230% better in their overall performance – faster and more accurate in performing surgeries – than traditionally-trained surgeons.

VR also makes surgery and post-operation less painful for patients. With VR being as noninvasive as possible, patients suffering from things like gastrointestinal, cardiac, and neurological problems find them less painful when using VR to visualize soothing images and scenarios to distract them from what’s going on. Even women in labor can use VR to distract them from labor pains. With VR, the hospital experience is less stressful for patients.

4. Wearable Trackers And Sensors

With wearable trackers like Fitbit, it has never been easier for people to track their steps and heart rate. But pretty soon, these types of trackers and sensors will be able to detect one’s health status, so that people can take better control of their lives. Whether you’re looking to manage your weight, have lower stress levels, check on your body cognitively, or find a good level to be fit and active, wearable trackers and sensors will soon be able to do those things.

Here are some of the technological advances to date:

  • Fitbit Ionic – Lets you monitor your sleep, and even tracks your workout.
  • Polar H10 – Helps you find the best exercises for you, and fine-tune your current practices. (Wear this with the Fitbit Ionic, if you desire.)
  • The Muse Headband – Helps you focus on the major things that make your meditation session successful.

Now more than ever, it’s easier for people to track their health, and get a better hold of what they would need to do to stay healthy and active. 

5. Nanotech

“Nanomedicine will soon be a reality, if not now,” says Hollie Kelly, a project manager at Bestbritishessays and Academ advisor. “People are already seeing nanoparticles and nanodevices as our drug delivery systems, tiny surgeons, and cancer treatment tools.”

For example, there is already talk about smart pills like the PillCam, which is a noninvasive, electronic pill that can relay diagnostic information about the patient and or release necessary medication via smartphone. The medical industry is hoping that these smart pills can take biopsy samples for further analysis, or take the place of traditional, invasive surgeries.

Conclusion

With technology already changing our world at a rapid pace, healthcare will surely benefit from innovations from technological advances. Although these technological advances may not show up overnight, you can rest assured that doctors, physicians, surgeons, and developers are working towards these solutions, and promising a brighter future in healthcare.

Molly Crockett writes for Ukservicesreviews.com and Big Assignments. She also writes articles about writing and editing on Best Coursework Services. As a marketing writer, she shares her unique lifestyle tips and personal development advice with her audience.

Cancer Trauma: How To Know If You’re At Risk and Key Strategies for Recovery

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The impact of cancer extends beyond the merely physical. While treatment targets cancer specifically in the body, the experience doesn’t leave the mind, spirit or emotions untouched.  The toll it takes has been likened to a natural disaster or trauma. In fact, recent studies have put forward the theory that surviving cancer fits the framework of Post Traumatic Stress Disorder (PTSD). [1] The term PTSD is commonly used to describe a range of symptoms an individual may develop in response to experiencing a traumatic event, in which bodily harm was experienced or threatened.

Most people associate PTSD with war veterans and victims of violent crime, but any life experience in which our safety and mortality are threatened can trigger PTSD. The physical and mental shock of having a life-threatening disease is a traumatic event for many cancer patients.[2] The experience of trying to get back to normal after cancer treatment ends mirrors that of returning combat soldiers. The immediate crisis is over but our sense of security is shattered, leaving us feeling unsettled and vulnerable.

And what of those for whom treatment doesn’t end?  Metastatic breast cancer patient, Abigail Johnston points out that “for men and women enduring the trauma of cancer treatment, the trauma is never over… reminders exist everywhere, ready to pop out when least expected to wreak havoc.” [3]

Could You Have Cancer-Related PTSD?

The symptoms of PTSD are similar to those of other states such as depression and anxiety, but one of the main signs that distinguishes PTSD is re-experiencing the traumatic event, often in the form of recurrent dreams or intrusive thoughts.  These may consist of persistent memories of taste, smell, touch, and sound (for example you may still be able to “taste” the metallic taste of chemotherapy when you think about the event).

A number of risk factors may make you more vulnerable to PTSD.   Your life experiences, including the amount and severity of trauma you’ve gone through since early childhood; having a high level of stress or other mental health problems, such as anxiety or depression; lacking a good support system of family and friends; and the way you deal with stress are all contributing factors.  On the other hand, certain factors, such as increased social support, accurate information and supportive medical staff may lower the risk of developing PTSD.

Signs and Symptoms of PTSD

Symptoms of PTSD can arise suddenly, gradually, or come and go over time.  Sometimes symptoms appear seemingly out of the blue. At other times, they are triggered by something like the anniversary of your diagnosis or surgery, follow-up scans, or a certain image, sound or smell.

There is no right or wrong way to think, feel, or respond to cancer, but it’s important to know which symptoms and signs to look out for, so you can put strategies in place to deal with it. People react in different ways to traumatic events and you may experience some or all of the following reactions to a greater or lesser degree.

  • Re-living the traumatic event: Intense memories of the time around your diagnosis, flashbacks or nightmares, especially if accompanied by symptoms like racing heartbeat, shortness of breath, sweating, nausea, or uncontrollable shaking.
  • Increased arousal: Feeling hyper-alert ( the “fight” and “flight” reaction is always on even though there is no present danger at hand), on edge, irritable, easily startled or angered; mood swings, difficulty sleeping or concentrating.
  • Avoidance: Staying away from places that remind you of the traumatic time (for example, avoidance of follow-up appointments).

8 Key Strategies and Tips for Recovery

 

1. Acknowledge and accept your feelings

Don’t deny or ignore how you are feeling. Accepting your feelings is part of the healing process. Allow yourself to feel what you feel without judgment or guilt. Remember,  there is no right or wrong way to think, feel, or respond to cancer.  Be compassionate to yourself and patient with the pace of recovery.  Talk through your fears with someone you trust. Try journaling, art or other creative outlets to help you work through your feelings.

2. Avoid obsessive thinking

While it’s  important not to ignore your feelings, obsessively dwelling on them will slow the healing process down.  One tip is to designate one or two 10-minute periods each day, time in which you can fully focus on your feelings. When intrusive thoughts come into your head during the day, write them down and “postpone” them to the period you’ve designated.

3. Reduce your stress

Make relaxation a part of your regular routine. Learn to meditate, practice yoga, take a walk in nature or do whatever it is that helps you relax and unwind. Relaxation is not a luxury – it is a necessary step in your recovery.

4. Take regular exercise

Regular exercise boosts serotonin, endorphins, and other feel-good brain chemicals.  It’s one of the simplest and most effective ways to reduce stress and anxiety, helping you feel grounded in times of emotional stress.

5. Eat a healthy diet

A healthy body increases your ability to cope with stress from a trauma.  Foods rich in certain omega-3 fats—such as salmon, walnuts, soybeans, and flaxseeds—can give your mood a boost. Avoid caffeine, alcohol and nicotine, which can worsen symptoms.

6. Get plenty of sleep

Poor sleep can make your trauma symptoms worse. Go to sleep and get up at the same time each day and aim for 7 to 9 hours of sleep each night.

7. Pay attention to triggers

Anniversaries of your surgery, diagnosis and other cancer-related milestones can reawaken memories and feelings. Plan ahead for those times.

8. Connect with others

Following a trauma, you may want to withdraw from others, but isolation makes things worse. Research shows that support from others is an important part of your healing journey.  Look to cancer support groups in your area or search online for groups.   Talking to a psycho-oncologist or counsellor can also help.

When to Seek Help

It’s normal to feel anxious and unsettled after a traumatic event such as cancer.  A diagnosis of cancer is distressing, the treatments and side effects are stressful, and the fear of recurrence is frightening.  Most people find the intensity of their feelings will ease in a relatively short period of time, but for some the feelings will stick around or increase in intensity.

If painful thoughts and intrusive memories last longer than a month, and begin to cause problems in your  personal relationships, employment, or other important areas of daily life,  it’s important to seek a professional diagnosis of PTSD. The sooner PTSD is tackled, the easier it is to overcome.  Unfortunately, many patients are not referred to psycho-oncology services to be assessed and treated, as high levels of sadness and anxiety are often perceived as ‘normal’ reactions to cancer diagnosis and treatment,[4] so it may be up to you to advocate for your own assessment.

Types of treatment can include cognitive-behavioral therapy (adapting negative ways of thinking into more positive ones to help “re-frame” the traumatic experience); exposure therapy (to help you safely face the thing that you find frightening); medication (antidepressants/anti-anxiety drugs); and psychotherapy. When looking for a therapist, seek out mental health professionals who specialize in the treatment of trauma and PTSD.

You may also want to consider a form of treatment called EMDR (Eye Movement Desensitization and Reprocessing), which incorporates elements of cognitive-behavioral and exposure therapy with rhythmic eye movements designed to stimulate the information-processing system in the brain. The aim of the treatment is to help you process the traumatic events, and speed up recovery.

Conclusion

A trauma like cancer shatters our sense of security,  making us feel powerless and vulnerable. Taking positive action towards recovery directly challenges this sense of helplessness and helps us regain a sense of control.  It can take time to get over the trauma and feel safe again.  But by seeking treatment, reaching out for support, and developing new coping skills you can heal and move on with your life.

[1] The Diagnostic and Statistical Manual of Mental Disorders introduced malignant disease in its definition of PTSD in 1994.

[2]  The National Cancer Institute estimates that approximately 35% of patients experiencing cancer may suffer symptoms of PTSD.

[3] No Half Measures. “The Violence of Cancer” https://nohalfmeasures.blog/2020/01/09/the-violence-of-cancer/

[4] Leano, A., Korman, M. B., Goldberg, L., & Ellis, J. (2019). Are we missing PTSD in our patients with cancer? Part I. Canadian oncology nursing journal = Revue canadienne de nursing oncologique, 29(2), 141–146.

Three Night Time Activities To Help Cancer Patients Fall Asleep Quickly

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Battling cancer is, undoubtedly, tough. On any given day, you might find yourself feeling so sick that you can’t even get out of bed. Being relegated to bed and struggling to even fall asleep can feel utterly disheartening. Adopting some healthy habits in your sleep routine can help to ease your body and mind into sleep more quickly and easily, letting you get some much needed rest and recharge.

Why Does Cancer Alter Your Sleep?

There are a lot of side-effects that you might experience as a result of your cancer treatment. Though one of the most common side-effects is fatigue, many patients also find that they have difficulty sleeping, which only exacerbates their feeling of  fatigue and sleep-deprivation. These sleeping problems can be the result of many factors such as newly developed sleep disorders, physical triggers, and psychological triggers.

Sleep Disorders

It is incredibly common for cancer patients to experience insomnia, which refers to any number of factors that make it difficult for someone to fall asleep and/or stay asleep. People with a serious illness are at an increased risk for insomnia. In fact, while about 20% to 30% of the healthy population suffers insomnia, over half of all cancer patients have reported facing periods of insomnia.

To be clear, insomnia is not caused by cancer, but it is a precipitating issue that results from the physical and emotional stress that often accompanies a cancer diagnosis.

Other sleep disorders may also manifest, such as sleep apnea, hypersomnia, circadian rhythm disorders, parasomnia, and restless leg syndrome. All of these make it difficult for sufferers to fall asleep and sleep soundly through the night, therefore deteriorating sleep quality and causing daytime fatigue and exhaustion.

Physical Triggers

Cancer can cause a great deal of pain and discomfort, which makes it understandably difficult to fall asleep as well. Tumors and treatments alike may result in troublesome pressure in isolated spots on the body or all throughout, as well as gastrointestinal issues, breathing problems, fevers and itching, to name just a few physical symptoms. When your body is uncomfortable, it is incredibly difficult to relax and lull yourself into restful sleep.

Psychological Triggers

Additionally, cancer comes with its fair share of life changes and psychological stressors. Fear and anxiety related to your diagnosis and prognosis alone can be enough to keep you up at night.

Following your diagnosis, you might also experience career, relationship, and body image changes which cause additional stress. We understand that cancer can be a distressing experience, and many patients are at an increased risk for anxiety and depression.

If you are experiencing any troublesome side-effects, whether they are related to your sleep pattern, your physical well-being, or your mental health, it is important to consult your oncologist and other medical professionals for their advice and assistance in easing your symptoms.

How Having A Routine Makes It Easier To Fall Asleep And Sleep Well

For the sake of your health and quality of life, sleep is perhaps the most important thing you can do for yourself. A good night’s sleep can increase productivity, improve mood, and expedite the body’s natural healing processes. This is a vital part of everyone’s life, not just those who are battling illness—still, up to half of all Americans report not getting enough high-quality sleep each night.

If you are kept up by physical pain or emotional stress, implementing a bedtime routine that works to calm your mind and body in preparation for sleep might be the change that you need. Your routine does not have to be overly complicated, especially if you don’t have a whole lot of time or energy in the evening, but a few moments of intentionality before bed can work wonders for your sleep quality and relieve daytime fatigue and sleepiness.

1) Take A Bath

We all like to be warm and cozy in bed at night (hello, fuzzy blankets!) but it is actually really important for your core body temperature to be fairly cool in order to induce sleep effectively. Our bodies follow circadian rhythms which dictate when to sleep and when to wake up. At night, your body naturally cools down and begins to release melatonin and other sleep hormones. Taking a bath or warm shower before bed can have several positive benefits to your sleep, not the least of which being a reduction in your core body temperature.

It may seem counterintuitive that soaking in hot water helps to cool you down, but when you get out of the tub the water begins to evaporate from your skin, cooling your core and cuing your circadian rhythm to do its thing. Baths also improve circulation, ease aches and pains, and help you relax and disconnect before bed.

If you decide to implement a bath or shower into your bedtime routine, go ahead and make it a real treat for yourself. Even just fifteen minutes of uninterrupted relaxation time can have major benefits. Light a calming candle or turn on soothing music, allow yourself to let go of any stressful thoughts or to dos and just breathe. We recommend bathing about one to two hours before bed so that your body has enough time to fully cool down and reap all the cleansing rewards of your pre-slumber soak.

2) Stretch

Practicing some simple yoga stretches before bed can also help sooth your mind and body before bed. In fact, exercising regularly has been seen to have major benefits on sleep quality. Even if you are someone who abhors spending time in the gym or for whom running is a form of torture, you can get in touch with your body and improve your sleep with just a few gentle stretches or a basic yoga practice before bed.

Getting your body moving releases endorphins and enhances mental clarity. If you plan on participating in a workout where you break a bit more of a sweat, we recommend scheduling that earlier in the day so your body isn’t too warm or wired before bed. Stretching and breathing exercises, however, have the same positive benefits and can be done right before bed as they help to relax your mind and body.

Not only does yoga loosen up your muscles and help to relieve pain, it also encourages mindfulness and developing a trust in one’s own body. After a cancer diagnosis, it can be difficult to have faith in your body’s ability to keep you healthy. When you practice yoga, however, the process allows you to see your strength and flexibility improve over time. You will be amazed by what your body is able to do!

Getting in touch with your mind and body through a yoga practice or stretching routine has also been seen to have positive spiritual benefits for practitioners. No matter what your spiritual discipline is, taking time out of your day to clear your mind and ground your body can be enlightening and spiritually encouraging. Use the time that you are stretching to engage in prayer, meditation, or simply focus on controlling your breathing.

3) Keep A Journal 

Do you find that as soon as your head hits your pillow it begins swirling with all of your unfinished tasks and worries? You are not alone! Writing in a journal each night before bed can help to ease your mind and stave off stress and anxiety that commonly keeps you up at night.

What you decide to write is up to you. You can jot down a recount of what you did throughout the day, or make a plan for what you intend on doing the following day. Perhaps you have a mantra of aspiration phrase that encourages you? Try writing this down each night or compose a list of things that you are grateful for or proud of from each day. If you are struggling with day time fatigue, using your journal as a place to record your daily fatigue level (on a scale of 1-10) and the activities that you participated in throughout the day can be useful for figuring out your fatigue triggers and working to manage your energy efficiently.

Ultimately, having a place to clear your head and process your thoughts is a great addition to any bedtime routine. It does not have to take a whole lot of time, nor does it have to follow any sort of structure. This journal should be for you and you alone, so don’t overthink it, just get to jotting (and then get to snoozing!)

Wrapping Up 

Ultimately, changing your routine can create a sense of regularity and control, helping to ease your mind and body into sleep. Routine changes, however, are no substitute for medical care and a strong support system. So, if you are having trouble sleeping, do not hesitate to mention it to your doctor as this might be a symptom of a larger problem.

Words Matter: Why Cancer Isn’t a Game of Winners or Losers

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Are you “battling” cancer? Do you know someone who has “lost their fight” with the disease and died?

It seems whenever we hear a story about someone with cancer, war metaphors are never far behind.  Cancer battles must invariably be bravely fought, won, or lost.  Using this metaphor implies that if a patient fights hard enough and/or long enough, he or she will be able to “win the war.” The trouble with using this particular kind of metaphor to describe cancer is it puts the burden of healing on patients by turning them into winners and losers.  As breast cancer blogger, Nancy Stordahl, writes in What Does Beating Cancer Mean Anyway? ”Struggling to live up to some gold standard of what beating cancer means, adds to the already exhausting burden. We need to stop patronizing and judging cancer patients based on misguided battle talk analogies. Cancer isn’t an opponent in some war game you can stomp out by mindset or determination.”

Besides, the battle metaphor takes no account of the sheer randomness of the disease. Using a statistical model that measures the proportion of cancer risk, across many tissue types, scientists from the Johns Hopkins Kimmel Cancer Center published a study in 2015 which concluded that two-thirds of the variation in adult cancer risk across tissues can be explained primarily by “bad luck.” In other words, a major contributing factor to cancer is in fact beyond anyone’s control. For the most part, we don’t know why one person is alive 10 years after the diagnosis of advanced cancer, whereas another dies within months.

By this reasoning, no amount of fighting or battling cancer can affect its outcome.  Commenting on the study, the researchers said, “Many people have found relief in this research. Cancer has a long history of stigmatization. Patients and family members frequently blame themselves, believing there was something they could have done to prevent their or their family member’s cancer. We have heard from many of these families and are pleased that our analysis could bring comfort and even lift the burden of guilt in those who have suffered the physical and emotional consequences of cancer.”

Cancer is a disease; not a military campaign

Cancer is a disease; not a military campaign. In the words of patient and caregiver Jana Buhlman, “it’s a disease that people manage.”  Cancer is a complex disease. Yet there still exists a prevailing attitude to cancer which treats survival as though it were somehow an act of will.  You’ve got to be strong, remain positive and be courageous to overcome the disease.  Clodagh Loughrey, who was diagnosed with breast cancer nine years ago, explains, “I was absolutely petrified at the time, the opposite of strong or courageous, and to be also made to feel guilty for being scared by well-meaning exhortations to be ‘be positive’….people mean well and I didn’t want to sound ungrateful for the support as it is far worse (and easier for them) to avoid people with cancer, and some people did.”

What other diseases or condition do we say this about? “Do we fight a heart attack or a stroke? Are we told in any other illness to “keep fighting”? asks Jo Taylor, Founder of After Breast Cancer Diagnosis.   The fact is cancer doesn’t care how courageous or positive you are. Patients are in remission because treatment eliminated every cancer cell from their bodies, not because the patient fought courageously or was endlessly positive.  As a patient who is currently NED (i.e. no evidence of disease) I didn’t fight any harder than anyone else with this disease. I haven’t “beaten” cancer. I don’t know for sure that cancer will not come back again.

Cancer isn’t a game of winners and losers

I’ve lost count of the number of times I’ve read about patients who are in remission from cancer, having “won their fight” against the disease. Journalists in particular seem incapable of writing about a person who has died from cancer without resorting to the “lost fight” cliché.  Julia Barnickle, who is living with metastatic breast cancer, points out that while she doesn’t like the term personally, “I have no problem with cancer patients using fighting talk. However, I do object to the media using it, especially in the situation where someone is said to have “lost their battle with cancer.” It’s simply a hackneyed way of grabbing attention.”

Does this imply that patients in remission have somehow done more than those who aren’t in remission?  Or that cancer progression or death from cancer is somehow an indication of failure – of not having had the ability to fight and defeat the enemy?  “It seems,” in the words of breast cancer blogger Maureen Kenny, “if you’ve got cancer you’re almost always seen as battling or fighting it, more often than not bravely. We never hear of anyone dying of the disease after a lacklustre, take or it or leave it, weak-willed tussle.”

Cancer shouldn’t be reduced in this way to a game of winners and losers.  Commenting at the time of the death of film critic Roger Ebert, Michael Wosnick, wrote: “The use of the word, “lose” is like a zero-sum game to me: if someone or something loses then that means that someone or something else wins. You can’t have a loser if you don’t have a winner. We should not so easily give cancer that kind of power over us.”

If someone has lifelong hypertension and dies from a heart attack, do we say in the obituary that they lost their battle with high blood pressure? Then why do so many deaths from cancer get reported this way? While it’s not quite “blaming the victim”, it does have an implicit element of somehow placing the ultimate responsibility for having died in the hands of the deceased.

When words blame

Oncologist, Dr Don Dizon, tells a story about taking care of a young patient with ovarian cancer during his first year as an attending physician at Memorial Sloan Kettering Cancer Center. The patient had just relapsed from first-line treatment and in his discussion with her about the next steps, Dr. Dizon explains that, “despite the failure of first-line treatment, there are many more options for you.”

The doctor was stunned by the patient’s tearful reaction to his words: “You make it sound like this was my fault, like I did something wrong!” she said. “I’m sorry I failed chemotherapy, if that’s what you think, and I’m sorry I disappointed you.”

It’s a lesson Dr. Dizon has never forgotten, as he describes in his own words: “It was never my intention to place ‘blame’ on something so devastating as a cancer recurrence, and I certainly did not mean to imply that she had failed. These many years later, I still consider this encounter a watershed moment in my career as an oncologist.”

The “battle with cancer” may be “only a metaphor” but it stands for a quite destructive attitude that, to the extent it influences doctors as well, distorts the treatment of cancer too.  In a JAMA Oncology article, the authors discuss how “the continuous urge to win the battle extends to oncologists, who actively treat patients for too long. The fact is that 8% of patients receive chemotherapy within 2 weeks of dying of cancer, and 62% within 2 months. Late chemotherapy is associated with decreased use of hospice, greater use of emergency interventions (including resuscitation), and increased risk of dying in an intensive care unit vs at home. This all clearly reflects our society’s need to battle until the end.”

Embracing a fighting spirit can work for some patients

This isn’t to deny that some cancer patients embrace a fighting spirit as a way that helps them feel more in control.  Cancer survivor, nurse and educator, Beth Thompson describes how “identifying as a shorn ‘warrior’ psyched me up for and pushed me through treatment.”  Sara Turle, a 9-year survivor of cancer, also found resonance in the metaphor. “For me I was never battling cancer: it’s a disease, but I was definitely battling how I managed diagnosis and particularly getting through the side effects of treatments,” she explains. “It helped me to look at each stage and at times each day and even hour, at worst points, with a view of getting through, surviving and celebrating with just a simple acknowledgement. It truly helped me feeling that achievement and it helped with knowing that I was going to have to face it again.”

Professor Elena Semino and her colleagues have been studying the use of metaphors in the way we talk about cancer since 2012. As part of their research they have analysed 1.5 million words taken from interviews and online forum discussions involving cancer patients, family carers and health professionals. The team found that the type of metaphors people chose to use when describing their cancer reflected and affected how they viewed and experienced their illness. “For some patients, some of the time, the idea of being engaged in a fight is motivating,” explained Sermino. “Some people say with pride that “I’m such a fighter”, and they find a sense of meaning and purpose and identity in that. The study showed that we are all different, and different metaphors work for different people, and at different times.”

I agree. I’m not criticizing individuals who draw strength from calling themselves fighters.  Everyone is entitled to use whatever language they want to describe their own experiences. As Sara says, “My belief is that the right language is what is right for the individual person and I would hate to think that people who do find this language helps, feel that they can’t openly use for fear of what others may think. Whatever language gets you through is the right language for me. I am very mindful of when speaking to people now to be sensitive to the language they are happy with and these discussions of differing views have helped me with this.”  Beth agrees and asks, “Can we educate while still leaving room for what works for the individual experience of cancer?”

Wrapping Up

If you believe, as many patients do, that the words we use to describe cancer matter, how then should we begin to conceptualize it? Stephanie Sliekers asks a similar question in this HuffPost article, “If cancer really is the ‘enemy’, what’s the best way to beat it?” Her answer? “By studying and understanding it as it is, a disease borne out of human blood, tissues and genes, a disease that lives within us whether it is treatable or fatal.”

Perhaps, rather than speaking of cancer in militaristic terms, it’s better to communicate that we are “living with cancer” for as long and as well as we can. And when a person dies, let’s not say he/she has lost anything, but rather that person has died after living with cancer for a period of time.

Words matter a great deal in life, death, and everything that comes in-between. To quote Dr Dizon “Words are powerful and despite our best intentions, can hurt—this is true in life, and it is true in oncology.”

How Anxiety Impacts Sleep

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Anxieties from the day can be inescapable by night. You can try so hard to sleep or to stay asleep, but worrisome thoughts cloud your mind and make it impossible to clear your mind enough to doze off. Issues like money, children, and work can seem overwhelming, where such anxiety-provoking topics develop into stress that causes your mind and body to stay awake. So what can you do?

Photo by Gregory Pappas on Unsplash

There are several comorbid factors to stress that can be problematic sources of your insomnia as well. Don’t let anxiety or these related matters control you though. Instead of trying to control the stressors in your life by thinking of them all the time, focus instead on what you can actually control:

Your Sleep Space

Photo by Brianna Santellan on Unsplash 

Make your bedroom a stress-free sanctuary. Keep your bedroom dark, quiet, and cool, and use it only for sex and sleep. Since you can’t completely control anxiety, eliminate any other threats to your sleep quality, such as what type of mattress you sleep on. Consider what would the right mattress feel like for you, based on your individual sleep preferences. Use a fan to drown out extra noise, and make sure your pillows are comfortable too. Turn any clock away from you so you don’t get stressed out by seeing it is very late, if you are still awake. If you don’t fall asleep in 15 minutes, leave your bedroom and do something relaxing in another room.

Your Routine

Photo by Brianna Santellan on Unsplash

 Establishing daily and nightly routines is key for regular sleep, even on the weekends. Block out seven to nine hours for sleep every night, and make sure you wake up at the same time on both weekdays and the weekend. Stop consuming nicotine, alcohol, or caffeine at least three hours before your set bedtime, and avoid working, watching TV, or using a handheld mobile device in bed right before you try to fall asleep. Make it habit to set aside 30 minutes prior to bed to read, listen to soft music, or meditate, so you can relax, clear your mind, and settle into your bed as a stress-free tranquil zone.

How You are Staying Active

Photo by Taylor Jacobs on Unsplash

 How active you are during the day impacts your sleep quality as well. Exercise is excellent for both physical and mental health, where exercising regularly helps you establish regular sleep patterns. You can take out your frustrations in exercise, where you leave the gym with a worry and frustration free head. Exercise also produces mood-enhancing endorphins – just remember to exercise only in the morning or afternoon, as those same endorphins will keep you up if you exercise right before bedtime. And your exercise doesn’t have to be major – even one brisk walk around your neighborhood each day has been demonstrated to help alleviate chronic insomnia. As exercise has been demonstrated to help you develop strength both physically and mentally, remember that mental health is a factor to also be considered when placing value and effort in improving your sleep life.

While increasing anxiety and decreasing sleep can seem like a never ending cycle, you can put an end to what feels so frustrating. By putting these principles and guidelines into practice, you are being proactive in making a difference for you. If you still have difficulty falling or staying asleep, reach out to family and friends for support, and consider seeing a therapist.

Additional Resource

Tips For A Smooth Recovery From Oral Surgery

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An estimated 51,500 adults in the United States get diagnosed with oral and oropharyngeal cancers each year. Many of these people require oral surgery as part of their treatment. Oral surgery itself can present problems, such as damaging teeth and gums, causing pain and swelling. Dealing with these before and after surgery can help to speed up your recovery time and improve your comfort throughout, getting you back to life as soon as possible.

Caring for your teeth

Many cancer patients lose their appetite during treatment or struggle to eat after oral surgery. They are encouraged to have high calorie drinks for nutrients, but these often contain a lot of sugar and can be very damaging to teeth.Oral surgery for cancer can be done after doses of chemotherapy or radiation, which can weaken teeth and gums. If you have any teeth that are damaged or vulnerable you should consider having these extracted before surgery as bone necrosis can occur afterwards, particularly if you’ve had oral radiotherapy. Once you’ve recovered, lost and damaged teeth can be replaced with dentures or dental implants to give a natural look and feel, helping you to live a normal life again.

What you can eat after oral surgery

Your surgeon will offer you advice specific to you, but there are some basic guidelines you should follow. Once any bleeding stops and for the first two days post-op you can eat soft foods and liquids, such as yogurt, soups and smoothies. Include foods that are rich in vitamins A and C as these help to speed up recovery from surgery. A study from the National Institutes of Health gave patients 500-3,000 mg of vitamin C, which is 8-50 times higher than the RDA. All patients were recovering from various types of surgeries, including oral surgeries. They found that the high doses promoted new collagen synthesis, which helped wounds to heal faster. Research from the University of Michigan also found that high doses of vitamin C before surgery reduced the risk of excessive bleeding, so upping your intake before and after can be beneficial.

Dealing with pain and swelling

Unfortunately, after almost any oral surgery you will experience some pain, swelling and possible bruising. Many surgeons will advise you to regularly put ice on the area to reduce swelling, however recent research indicates that ice can stop the immune system’s natural response and actually delay healing. Ice can be a natural pain relief though, so if you choose to use it, apply it for 5 minutes at a time with 20 minute breaks in between as this is less likely to stop the body’s natural response. You’ll probably receive pain medication too, make sure you take this as instructed, even before pain occurs as it can prevent it.

Recovering from oral surgery can be painful, but it can also be a step in the right direction for your recovery, helping you to lead a normal and happy life. Pain and swelling are to be expected, and consuming soft foods and plenty of nutrients and minerals can help with this.

Coping With the Emotional Side Effects of AML

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A dynamic panel discusses the important aspects of care for AML patients, with a focus on the emotional side effects, research on new treatments underway and finding suitable clinical trials.

Coping With the Emotional Side Effects of AML from Patient Empowerment Network on Vimeo. 

Downloadable Program Guide

Transcript:

Beth Probert:

Hello, I’m Beth Probert, and I am a patient advocated and ambassador with Patient Power.

I am also an MPN patient. Thanks for joining us for this Patient Empowerment Program in partnership with The Leukemia and Lymphoma Society. Today, our program is: Coping with the Emotional Side-Effects of AML. And we are joining our AML community.

We’re gonna focus on where we’re headed with treatment of Acute Myeloid Leukemia; what patients can look forward to in the coming year.

We will also answer questions that you can submit to AML at patientpower.info. And please note that we cannot provide specific medical advice over the internet. And it wouldn’t be fair to you. We always recommend that you seek care from your own doctor or AML specialist, and that’s how you will get the best treatment for you.

I’d like to start now and introduce our panel. And we’ll start off with Dr. Thomas LeBlanc. A medical oncologist, palliative care physician, and patient experience researcher from Duke Cancer Institute. Welcome, Dr. LeBlanc.

 

Dr. LeBlanc:

Hi, thanks for having me.

 

Beth Probert:

And I would like to introduce Michelle Rajotte. She is the Associate Director of the Leukemia Lymphoma Society’s Information Resources Center. Michelle has been with LLS for 13 years. Hi, Michelle.

 

Michelle Rajotte:

Hi, good to be here.

 

Beth Probert:

Thank you. And last but not least, I’d like to introduce our patient advocate today, James Bond. And James has survived Multiple Myeloma for 27 years, and AML for the past 7 years. James and his wife, Kathleen, have shared their story in 29 states. And patients can contact him directly at his email, which is Jim.Bond48@gmail.com.

So, thank you for joining us today, Jim.

 

James Bond:

Happy to be here.

 

Beth Probert:

Great. Well, Dr. LeBlanc, I would like to start with you. Tell us a little bit about your background in AML and palliative care, please.

 

Dr. LeBlanc:

Sure. So, by training I’m an oncologist. But when I went through my cancer care training, I realized that oftentimes we fail to really attend to some of the issues that are most important to patients and families. And those might be things related to symptom burden, quality of life, emotional well-being, communication, understanding of prognosis.

And so, I ended up pursing additional training in palliative medicine where those types of issues really are the focus. And in doing so, got a sense that really adding specialist palliative care to cancer care and blood cancer care particularly, really could improve many aspects of the experience for patients and families.

And ultimately that is what my clinical practice and research have come to focus on. But in my clinical practice, I largely see patients with myeloid malignancies, including Acute Myeloid Leukemia and some related conditions.

 

Beth Probert:

That is so interesting and very unique because very often we see our doctors and we don’t get the whole palliative side of it. So, I can honestly and personally say that that is just a wonderful added bonus. Thank you.

And Michelle, can you tell us a little bit about your role at LLS, and really what the goal of the information resource center is?

 

Michelle Rajotte:

Sure. So, I’m part of the Information Resource Center at Leukemia Lymphoma Society. Which, The Leukemia and Lymphoma Society’s main goal is to help find a cure for Leukemia, Lymphoma, Hodgkin’s disease, Myeloma, and improve the quality of life of all patients and their families.

And IRC is apart of that. So, basically, what we do is – it’s staffed by information specialists who are master level, either social workers, nurses, or other healthcare professionals who’ve been trained in blood cancer. And we can do anything from answer questions, provide disease information, help with clinical trial searches, find different support resources, refer to other organizations if we need to for other resources. But really, it’s anything that someone needs in the moment.

So, we’ll talk with them over the phone, through email, or through chat online, and we figure out what it is that they need based on talking to them, or whatever they provide to us. And then, provide them with the resources and support they need.

 

Beth Probert:

Wow. And that is just invaluable. And we definitely need to bring focus to the cancer patients and what your department could ultimately provide to them. Thank you.

So, Jim. You are a long-time survivor. How has your cancer diagnosis impacted you emotionally?

 

James Bond:

Well, it’s been like riding a roller coaster. My care-giver wife, Kathleen, Kathleen is sorry she can’t be joining us today. But the lowest point, of course, was getting diagnosed with a deadly incurable blood cancer. My first one, Multiple Myeloma. And then the second one, AML, many years later.

And so, what we tried our best to do is, to try to even out that roller coaster ride emotionally. And, I’ll give you an example, after 10 years of dealing with Myeloma, I was told, Jim, there’s nothing left that can help you, you need to go to a hospice. And that was obviously crushing.

And what we tried to do is pull each other up and say, “Look, we’ve been through tough spots before.” And we figured out that just rely on the doctors, rely on our own research ability, and they’ll be something coming up. And we were able to figure out, hey, there’s a clinical trial that was mentioned to us, and within a month of being told to go to a hospice, we were out of town in a clinical trial, and within two weeks, I was told, “You’re in remission.”

So, that was a tremendous high. And again, what we try to do when we get really good news is pull each other down and try not to be so excited, but we try to even things out. And that’s very difficult to execute, but for 27 years now, we’ve had a good deal of experience. There are a few other tings we do emotionally, we say, “Look, let’s do all we can, and then let’s not look back and second guess ourselves.”

And even to make it more normal, we cut off all cancer discussions with ourselves, ideas, or with a family member at 8:00 p.m. our time. We say, “You know what? Let’s just do what we’re gonna do at night, and let’s defer that to the morning.” That tends to let our emotions calm down and let us live more normal lives. At least in our minds.

It has not been easy. It’s been very difficult and emotionally at times, we’ve actually played a role of trying to lift up the medical team who, the AML diagnosis in particular, they explained to me, “Jim, you’re 64 years old,” When I got AML, that was seven years ago. They said, “Your chances of survival are not good. The only way you can live is through a fourth bone marrow transplant. And this one has to be not from your matching sister, but from an unrelated donor, if we can find one.” 

So, they really encouraged me to consider just hanging up, but our approach, and this helps us emotionally is, no, we’re gonna treat this thing called cancer like a problem. We’re gonna put it in front of us, and we’re gonna deal with it as analytically, or unemotionally as we possibly can. And lo and behold, the doctors, as they’d come around in my, I don’t know, 10-week stay in the hospital, whatever it was, they would keep trying to say, “Jim, don’t get your hopes up. This might not work out.”

And it did work out, and we found ourselves much better off by, I do my favorite thing, and that is, I make myself exercise each and every day. And sometimes that exercise is not much, it’s walking with my IV pole around the floor section when doing a transplant.

Or it’s walking on my treadmill on snowy icy Ohio days like today. But that helps me emotionally because it gives me something that’s not cancer, it’s quiet time to think, and it really led to something that’s been just magical in terms of helping both of us emotionally.

When I had to leave town to do the clinical trial, my wife, Kathleen, got to thinking as a long-term volunteer of the American Cancer Society, she realized that there are not enough people in the country aware of these things that the ACS has called, “Hope Lodges.” So, she founded, launched, and leads, to this day – this was 13 years ago, she launched the first one. And I was not a cyclist, but I saw a link between the exercise that I think is so vital for me emotionally and physically, and this bike ride. So, I decided to buy a bike and trained. And I’ll be darned, I’ve ridden it every year four days, 328 miles from Cleveland to Cincinnati.

 

Beth Probert:

Wow, well that is really inspiring.

 

James Bond:

Thank you. And that helps me tremendously emotionally because that training and riding takes up a good three and a half, four months of my year, and I look forward to that, and the fundraising is tremendously exhilarating because I get to hear from people that I don’t hear from that often.

 

Beth Probert:

Yes.

 

James Bond:

So, the key there is emotionally, I think, is just having a long-term plan, and not letting –

 

Beth Probert:

And Jim, I’m just gonna jump in really quickly, this is amazing information. So, hold that thought, we are going to jump on some of the thoughts you said, and I do want to say real quickly, I love the, “We” in that. We.

 

James Bond:

Oh, absolutely.

 

Beth Probert:

And we’ll click back onto that. So, I’m gonna hop over now to Dr. LeBlanc. And could you go through, with your vast experience, what are the key emotional side effects that you see your ALM patients facing day to day?

 

Dr. LeBlanc:

Yeah, this is such an important question, and it’s one that we don’t ask often enough, and we don’t talk about these issues very often, unfortunately. So, I’m really excited that we’re having this webinar, first of all. And I’ll tell you, it’s important to recognize as well, every patient, every person is different. So, there is not one quintessential AML experience. That’s really important to recognize.

But at the same time, when we have studied this issue and interviewed patients, and care givers, and family members, there certainly have been some common themes that have come through about people’s experiences. And one of the one that is, I think, particularly important to recognize is the sense of shock at this diagnosis. Now, acute leukemias, we call them acute because they tend to come on very quickly and suddenly. 

And many of the patients we see will say things like, “I was fine three weeks ago. And now I can’t even walk up a flight of stairs.” And, “I’m so tired, I’m taking naps, this is not like me. I usually run marathons, and now I can only run a couple miles, something is going on.” And this really degenerates, for many, people over the course of day or a few weeks.

And sometimes it means they end up urgently in the hospital and are told, “You can’t leave. Something’s going on, we don’t really know what it is, but we’re concerned. You might have leukemia.” And if they’re not at a large medical center, they may get shipped off hours away from home to a place that’s not familiar where they don’t know anyone.

So, that shock and suddenness of the diagnosis makes everything else much more difficult, and it sometimes creates, even, social isolation related to where AML is treated. Where it tends to be treated more so at academic centers than it is in the community, although, certainly, some of these treatments are provided in the community.

But patients getting high-dose therapies do tend to come to large research centers. So, we’ve certainly seen that issue impact many patient’s experiences. The other one that comes up quite often, that really compounds the decision making and the emotional difficulties, is the issue of uncertainty. So, unlike many cancers, we really don’t know what to expect when a person is diagnosed with AML. And everyone asks, “Well, what stage is this?” and we don’t really have stages for this disease.

We, certainly, have ways that we can try to get a sense for what we might expect for the patient who’s sitting before us. And we do all kinds of fancy testing, and we talk at length about those issues, but at the same time, we really can’t say what’s going to happen to you, my patient sitting across from me who I’m trying to help guide through the process.

And there are actually a lot more risks associated with Leukemia treatments as you heard Jim talk about. A stem-cell transplant is a difficult and risky process, and sometimes that’s part of curing AML, or hoping to cure AML. But even high-dose chemotherapies in the hospital, some people actually do have really difficult complications, and even can die from those treatments, and yet, those are the treatments that usually are required to cure a person.

So, we have to have these difficult decisions made sometimes under a lot of distress emotionally, and amid the suddenness of this diagnosis, where we say, this is probably the best treatment for you, and it gives you a chance at cure, but it’s not a guarantee. And some people end up not making it out of the hospital. And usually what happens is, that’s just such difficult information. Many folks shut down and they say, “I don’t know, what should I do. Tell me what to do.”

Or they’ll turn to a family member or a friend who might or might not be around and available during that difficult time, especially if they’re in another city away from home. So, these are some of the things we’ll commonly see when patients are newly diagnosed with AML.

 

Beth Probert:

Wow. That is very intense. And there’s obvious emotional connections. And sometimes we hear someone’s diagnosed, and we completely forget that emotional side. So, I wanted to ask you, as well, you’ve been involved with research into the relationship between the emotional stress in AML patients and the overall prognosis. Could you please explain how the study was conducted, and what were some of the prevailing results of this study?

 

Dr. LeBlanc:

Sure. So, we did a longitudinal study of patients with AML who were being seen and treated on our in-patient service. So, these were mostly patients getting high-dose chemotherapy who would be stuck in the hospital for a month or even a bit more.

Like Jim described, getting these really intensive treatment regiments. And this was a study basically aimed at helping us better understand what people go through when they live that. And certainly, I’ve seen that in caring for many patients with AML, as have our nurses, and other members of the cancer care team, but actually, there has been very little formal, objective study of the patient experience with AML and related blood cancers.

So, what we did is we actually surveyed patients using validated instruments, and we assessed their symptoms, their quality of life, their overall distress levels, and in addition, we assed their understanding of their illness. Their understanding of what we call, “prognosis,” The idea of what the likely outcome of the treatment or the disease is going to be. And we did all of those – that whole battery of assessments every week when they were in the hospital, and then when they were out of the hospital, we did that every month.

And we followed patients for six or even upwards of 12 months, and different things happened. Some people went into remission and were cured, some people had relapses, some people went into transplant, some people had transient remissions, or even multiple relapses, got additional treatment. And by following patients over time, we were able to develop a profile of the patient experience with AML and look at different versions of that. Including, what people understand about their illness, and how that relates to their overall emotional well-being.

 

Beth Probert:

That is amazing. And was there something that just jumped out real quickly as far as the largest response rate you saw when people were taking care of that emotional part?

 

Dr. LeBlanc:

Well, the concerning thing that we found, which unfortunately is an issue across all of cancer care is that many people who are diagnosed with AML, especially when newly diagnosed, really don’t have a good understanding of the likely outcomes.

And it’s certainly not for lack of talking with patients and families about these issues, but it probably is a manifestation of the fact that this usually happened suddenly, as I mentioned, and it’s so emotionally overwhelming and difficult that it’s actually really difficult to contextualize the information that’s provided. And we, I think, end up overwhelming a lot of patients and families with so much information, that sometimes there’s a bit of a forest and trees problem, where maybe the most important factors don’t always get explained clearly or don’t come through well.

And we don’t always go back and check in about whether we did a good job of explaining things, which is unfortunately a shortcoming that most of us struggle with in taking care of patients. Communication of complex information is very difficult. 

So, we found that many folks didn’t understand, for example, that the treatment they were receiving maybe wasn’t likely to yield a cure, which is true in some instances of AML. Or they might not have had a very good understand of the risks. So, one study, for example, suggests that AML patients may actually think the treatment is way more risky than it really is. And is that prompting some people to not receive intensive treatments that maybe could be the right choice for them and the most helpful for them. So, that was the one main interesting finding.

And then, related to that, unfortunately we also found that many patients who do come to more accurately understand the outcomes that are most likely with their particular situation, some of these are better than others, everyone’s different, the more accurately people understand their illness, there tends to me more emotional distress and sadness. Perhaps realizing that this is a very difficult disease to treat. And unfortunately, when we were doing this study, this was before we have eight new drugs approved in the last two years. 

So, hopefully some of this has changed. But that’s why we’re having this webinar, and why we need to talk more about these issues.

 

Beth Probert:

Absolutely. So, now, Michelle. I definitely see that your role at LLS plays a huge part in this. And in your experience, how do you deal with this? What resources seem to be the most effective that you can provide patients in coping and the emotional side of this cancer diagnosis, and also, taking parts of what Dr. LeBlanc just said, I would love to hear from you now and what your role is.

 

Michelle Rajotte:

Sure. I think it’s different for different people. We’ll talk to people who want to know everything, and we’ll talk to people who just say, “Just tell me the basics, I can’t get overwhelmed right now.” And it also depends on where they are in their cancer journey. Are they just diagnosed; are they relapsed? I think a big piece is being able to talk to other people who can relate to what they are going through.

So, other people who have been through this already and have gotten to the other side and feel like, okay, it can get better, there is hope. Here’s some things that might help. Because unless you’ve been through it yourself, I don’t think you can completely understand. You can empathize, you can be there for someone, but your friends and your family may not be able to give you that support that someone could that has been through it.

So, for example, at LLS we have the Patty Robinson First Connection Program, which can help over the phone to be able to talk with someone. And they may be across the country, but they may be very similar in background to you and be able to answer some questions that you have while you’re going through things.

There’s an LLS community where you can go on and talk with people. We have a lot of online support groups. There are online chats that are set up to be able to talk with, again, others, it could be across the country, they’re people you may have never had the opportunity to meet. Or if you’re not doing well, or you’re in the hospital, or your immune system’s compromised, you still can reach out and get that support.

And it’s not going to be something where you physically have to go somewhere, but there’s those options too. Or someone may not be ready to go sit in a group and talk about what they’re going through but can sit in front of a computer and just say, “All right, I really do need to talk to someone.”

Also getting professional support from a social worker, or a counsellor, or just anyone who can help you get through this because it is extremely stressful. And some people think, “Oh, I really don’t need that.” But it may be exactly what you need just to help you get through it.

Also, pulling in friends and family. And again, sometimes they may be more stressful because they don’t completely understand, and even though they’re trying to help sometimes it may have the opposite effect, but the intention is there, and it’s good to have them there, even if it’s just to drive you to a doctor’s appointment. And help you understand what the doctor’s talking about.

 

Beth Probert:

Wow, that is very impactful. It sounds like you really give the patients a complete tool kit as far as how to have these conversations and the unbelievable amount of resources that are available to them. So, that is invaluable. Thank you, Michelle. We’ll get back to you again.

And Jim, going back to you, did you reach out to your doctor in regards to this whole emotional turmoil, and you said earlier the, “Roller coaster.” Was that a talking point with your doctor, by the way, on how you’re feeling and how to cope? What direction did you take when you were first diagnosed, and was your doctor part of the conversation?

 

James Bond:

Well, we’ve been very blessed, very lucky. My first doctor who diagnosed me, he really helped me by answering this question that I asked.

[00:27:30]

And asking questions is a good way for me to relive stress and gain information, like the kind of information that Beth and Tom talked about.

When I was new to blood cancer, I said, “Doctor, now, if you were in my shoes, whom would you have treat your case?” And frankly he was shocked because he was at a leading cancer institute in my hometown here, in Cleveland Ohio, and he gave it real thought. And his compassionate answer blew me away. He said, “Jim, the professor who taught my blood cancer course at the medical school works in another hospital. Another leading cancer institute here in Cleveland. And if I were in your shoes, I would go to him.”

Now, what I did – and for 10 years, until he retired, that man helped us, my wife and I, emotionally and medically in more ways than I could ever describe. 

An 8:00 phone call one night, and which we had never gotten from him, his name was Bob and of course, it’s a doctor, it’s an oncologist, I’ve got a deadly cancer, he’s calling at night. I’m thinking, “Oh, my god. The world’s coming down.” He really relieved our stress, he said, “Jim, those shoes you had on at your last appointment, may I ask you where you got those?”

So, like you said, Tom, each case is unique, and in our case, stress has been relived in some very unusual ways. I got in a car accident after my first of four stem-cell transplants, and my wife was having real problems with stress because now I was in remission and seemingly home free until it came back five years later, but she was really stressed out until I had a car accident where, not my fault, but somebody t-boned me and it really was a tough accident.

I was okay, but the car was wrecked. But when I called her to tell her that, she flipped out. And all this pent-up emotional stress she was going through came out, and it manifested in her yelling at me, how could I possibly have an accident after all we’ve been through? And the thing is, she caught herself, she listened to herself, and she realized, oh my gosh, what’s the point in getting yourself all in a knot over your incurable deadly cancer? You can get taken out by a car accident as any time. Things like that.

 

Beth Probert:

Absolutely. So, she really put it in perspective for you, didn’t she?

 

James Bond:

It really did. It really did. It just happened, it was coincidental that it happened, but it did. And so, we’ve used that. 

Another thing that really helps us with stress is, and this is gonna blow some people away, but the longer we’ve survived with these two cancers, the more we’ve gotten asked to share our story around the country. And if fact, in two countries overseas.

And here’s the thing. We realized from the very first story telling we did in our home town, how much telling our story helped us emotionally. We looked at each other when the couple left our house and we realized, oh my gosh, just sharing our story and the roller coaster parts of it, not the technical parts, but just the emotional part, that really helped us. And so, we welcome other opportunities, and we encourage other survivors, whether it be short-term or long-term survivors, to consider the kind of things that the LLS has, and other organizations that get us out there, get people out there to share your story. It is very helpful for us. And that was a huge surprise to us.

 

Beth Probert:

Well, that is wonderful. And Michelle, I’d like to come back to you for a moment. Do you have resources that you can provide to caregivers and patients with AML, that if they do want to share their story, and is that part of what you do, as well?

 

Michelle Rajotte:

Yes. That is part of the Patty Robinson First Connection program. What it is, it’s trained patient volunteers and family members who’ve been through this, who then want to be able to reach back out and help others who are going through it now. So, that’s one of the things they can do. They can volunteer at their chapters, and there’s always a way to get involved that way. There’s things on our website where people can share their story. There’s lots of different things. On the LLS community, there’s a way for them to be able to post what they’ve been through. There’s blogs that we do. There’s tons of different things. And as far as the care giver, Jim, you bring up a good point, they are going through a lot of stress, as well. And they need just as much support.

And we do have a lot of good caregiver resources now. We have a caregiver workbook that we can send out that has everything you could possibly need as a caregiver to know. And it’s divided into sections, so it’s not overwhelming, but it’s a way to have a roadmap to try to figure out, okay, what do I do? Because just like the person who’s been diagnosed, the care giver gets thrown into this and doesn’t know, what do we do; where do we go; what questions do we ask? I don’t even know where to start.

And a lot of times that’s the question we get at the IRC is, “I’m calling you, but I don’t even know why I’m calling you because I don’t even know what I’m supposed to know.” So, it’s really helping people try to figure out, what is that next step? And that’s really all you have to focus on. If you try to look at the big picture, it can be really overwhelming. But if you can get to the next step, that’s something that’s doable.

 

Beth Probert:

Wow, that’s wonderful to know you folks do provide those resources. Thank you.

So, Dr. LeBlanc, I’d like to shift over to managing fear, anxiety, depression. So, you mentioned a few times that being diagnosed can be so overwhelming, and we can’t ignore that this could lead to anxiety and depression. What sort of things do you recommend to your patients to allay these fears, and to put into place in their life in dealing with this? It’s obvious that for most people it is going to lead to the anxiety and depression.

 

Dr. LeBlanc:

Yeah, this is such an important question, and it’s a really difficult one to address. Most of the time, I do recommend that people talk about it. And sometimes that’s the most difficult thing to do even though it sounds obvious, but it’s often the elephant in the room.

So, many times, the doctors and other clinicians seeing patients with AML and other cancers are just so incredibly busy and also fixated on all of the medical details, and the labs, and the scans, and other treatments, complications, doses of chemo, all of these things that we need to be focused on, of course, that we forget about the person, and the way that they’re struggling with these issues.

And it’s not that we don’t care or that we’re bad people or anything, it’s just that’s never the number one priority when you have to get all of the details straight to make sure the person gets the right treatment. I try to ask, but sometimes we don’t do this. So, for example, if there are other clinicians listening and wondering how to do this, one thing that I do is to just say, “This is really difficult to go through. How are you holding up? What do you look to for strength?”

And I will ask the person there with them. Usually patients aren’t there alone, and typically the person who’s with them is the person who’s really helping them keep it all together. Whether it be a spouse, a family member, a caregiver, a friend.

And I usually turn to them and also ask them, “How are you holding up? What are you seeing? What is the patient not telling me?” You know? What are they going through that they’re – sometimes people will put on a brave face for the doctor and they won’t tell me how much they’re suffering at home, and I really need to know so that I can help.

So, really the best recommendation is open and honest communication. And the other great one is to seek out resources like the ones we just heard about. I sometimes will encourage patients to seek out a family therapist, a psychologist, somebody who they could see in the cancer center, a social worker, someone who they can sit down with for an even longer period of time and just talk about how difficult this experience is. And just talking about it sometimes is really some of the best medicine, honestly.

 

Beth Probert:

Wow. Yeah, I love the tie in to with making sure that the caregiver is doing okay, as well.

 

Dr. LeBlanc:

Yes.

 

Beth Probert:

We often look at them as a pillar of strength and forget that they need those resources.

And one of the things that I personally feel is really really helpful, and I’ve heard from the AML community as well, is the mind, body, soul; exercising, meditation. And Michelle, I wanted to ask you, is that something that, when you talk about resources, that your department provides? Do you find that that’s a very often asked question, and/or it’s a topic that you like to recommend to patients?

 

Michelle Rajotte:

We get a lot of questions about, what can I do? How can I help myself get healthier, or stay well? Or how can I help myself get stronger, or what can I do? And I think a lot of it is, you feel very powerless when you’re diagnosed, and you really don’t have any control. So, if there’s something you can do to feel like you’re taking part in your care and making decisions about some things you want to do, that’s great. We always say, “Check with your doctor to see what’s okay; what’s safe for you to do right now depending on how you’re doing.”

But we have a lot of resources on nutrition, we have a nutritionist that can do a consult, either over the phone or online through email. We have a lot of different resources, and webcasts, and podcasts, and videos, and we have a ton of resources.

It can be a little overwhelming just to go on to the website and try to figure out, okay, what do I look at? Where do I go? So, I would encourage them to call the IRC. We can walk you through, depending on what it is that you’re looking for in the moment, where to find it. How to bookmark it, so you can find it later.

But again, I think it’s really important to discus it with your doctor to see – obviously if you wanna go for a walk, and you’re okay to do it, that’s great. But if there’s a chance that your platelets are very low, and if something can happen, then you gotta check with them about that too. So, we’ll get an idea of what they can do, but we always send them back to the doctor, make sure whatever they decide to do, whether it’s supplements, again, check with your doctor because they can interact.

But anything they want to do to help themselves get stronger or take care of themselves is always a positive.

 

Beth Probert:

Wonderful. And, Jim, I’d like to ask you to stay on this topic for a minute. Could you give any advice about support groups?

 

James Bond:

Yes.

 

Beth Probert:

Is that something that you found to be a great resource in dealing with this kind of anxiety and depression?

 

James Bond:

Yes, I think support groups are for people who want to go to a support group. Put yourself back 27 years ago when we first we introduced to blood cancer. There were not a lot of support groups available. And we started out with keeping it more to ourselves and our family, and then as we grew comfortable with living an managing the fear, the risk, the anxiety, our circle spread out. But it really was not until we got invited to share our story that our eyes were opened of the power of support groups. And we could see it happening.

One other thing that, Tom, I’d like to mention to you, one of the most effective way to manage fear for my wife and I was late one Sunday night lying in week number six, or something, in the last transplant for AML, and I’m on the ropes, I’m in tough shape. And the phone rings, and it was my myeloma doctor from Boston where we go twice a year, his name’s Paul Richardson, he’s an outstanding, compassionate doctor.

It was Paul, and Paul said, “Jim, I’ve just talked to your wife Kathleen at her home,” she had just left for the night. And he said, he said to her what he then said to me. He said, “Jim, I know you’re in a tough spot, but I want you to know, that we’ve got other patients here at Dana Farber, who have been through exactly what you’re going through, myeloma followed by AML, bad, bad prognosis.”

And he assured me that I could do it. And, Tom, what that doctor’s phone call meant to my wife and I could have been the difference between getting through this thing, and not getting through it. Giving up, and not giving up.

And we really believe it’s because our doctors have taken the time to help us build a relationship with them. Knowing how busy they are, and how many patients they have, we found the world of oncologists and the nurses and the others, very compassionate people. And it’s worth that time to build that relationship whether it’s your ongoing doctor, or one that you go out of town for a second opinion with, those relationships mean everything. And the doctors who are willing to take their time, when it’s not really on the clock and help their patients, they are doing tons and tons of good for the world that we live in.

So, we’ve got some other techniques, but those are the things that really stand out to me in terms of managing in this area.

 

Beth Probert:

That’s wonderful, Jim, and it circles right back to you, Dr. LeBlanc, when you introduced yourself and you told us that there is just more than coming to the doctor, and reading the chart, and giving the blood results. It’s definitely very impactful. And what you spoke about earlier about how you bring in the palliative care and the emotional care. And on that note, I know this is a little cross-over, but can certainly add to anxiety and depression on everything that we’ve talked about, Dr. LeBlanc, but do you encounter, through your care and conversations with clients, their anxiety over the financial part of care? Is that something that you hear often?

 

Dr. LeBlanc:

Absolutely. The idea of financial toxicity, sort of like other kinds of systemic toxicities you would have from chemotherapy, it’s just as real as a patient who gets neuropathy from their chemo. And in some cases, may be more crippling.

One of my colleagues here at Duke is a leading researcher in this area, and he’s taught me a lot about this, and unfortunately, I’ve seen it a lot in my clinic. And as we are fortunate to have a number of new therapies available for AML and other diseases like multiple myeloma, the unfortunate aspect of this issue is that many of them are pills, and may states do not have parity laws in place that require insurers to treat pills the same way as they do chemo therapy that you would get in an infusion suite.

North Carolina is unfortunately one of those, where I practice, where we still don’t have a law. 

And that’s sometimes means I’m talking to a patient about an exciting new therapy, and then I find out that their monthly copay is going to be $3,000.00, and who can afford that? That’s just the copay amount for the patient just for one month of medication. This is, unfortunately, happening a lot. And thankfully, there are many resources that we can engage to help patients with these issues, but it is an increasing problem as medications are more sophisticated, they also have gotten much more expensive.

 

Beth Probert:

Yeah, and we hear this so often. And, of course, Michelle, I’m sure you’re hearing this, as well. And your department can direct people to the appropriate resources?

 

Michelle Rajotte:

Yes. It’s something we hear every day, unfortunately. Like Dr. LeBlanc was saying, we’ve got all these great new treatments now, but so many of them are oral, and a lot of patients, if they’re on Medicaid/Medicare especially, their copay is extremely high.

We do have copay assistance through LLS, we will also refer people onto other organizations that have assistance if we know of them. So, anywhere we can get people to get the help. We also do a lot of advocacy on that end, and we’re in Washington a lot and we’re sharing a lot of patient stories, and we’re trying to get the word out there that we shouldn’t have these barricades to treatment. We do all this research, we find all these wonderful treatments, and then people can’t have access to them. And that shouldn’t be.

So, that’s one of the things, along with the research and the patient assistance we have, we also focus on the advocacy part, and making sure that the oral parity bills are passed in hopefully every state. And that things are little bit more on an even plane, so people can use these wonderful treatments that are coming out.

 

Beth Probert:

Wonderful. And Michelle just hit on treatments, so Dr. LeBlanc; I would like to now go back to you. 

And could you tell us, in regard to treatments, advances in clinical trails for AML, what’s happening in research and should patients be hopeful?

 

Dr. LeBlanc:

Yeah, it’s really a very tremendous time in cancer care and in biomedicine in general. As I mentioned earlier, we had, if I remember correctly, eight new drugs approved for AML in the last two years. And we had been mostly using the same treatment for patients for the prior 40 years. The seven plus three induction regiment was developed in the ’60s or early ’70s, and mostly that’s the same regiment or related ones to it that we’ve been giving to people when we give them high-dose therapies for this disease.

Other things have improved during that time, as well, that are really improving outcomes, so we have much better supportive care medicines. We have growth factor injections that work better. We have better antibiotics. We have anti-fungal medicines that work a lot better.

So, when you add those developments, even to the old chemotherapy, that had improved outcomes prior to this spirt of approvals in the last two years, but now, especially, we really are in a new ear of how we treat AML. And now, we need to actually molecularly and genetically profile each individual patient’s leukemia, so that we can best know how to treat their disease because at this point, we have several testable targets that we might then prescribe a medication to address in an individual person’s case of AML. So, it’s getting more complicated, at yet at the same time, there are many more options, and it really is a time to be very hopeful about how things are going.

 

Beth Probert:

That sounds so encouraging. And Michelle, going back to you. How can you lead clients and their care givers to these clinical trials that are on the horizon? 

And can you talk a little bit about what that process looks like?

 

Michelle Rajotte:

Sure. If someone reaches out the IRC, we do have a group of nurses who do clinical trial searches specifically for blood cancers. And it’s not just, we’re gonna hand you a list as say, “Here, go talk to your doctor.” They will help through the process. So, they’ll really in-depth dig, and try to find trials that might be an option. Have you go back to your doctor, but then walk through it with you to help you get into that trial.

Because there’s so much research now, it’s wonderful, but it’s also really overwhelming if you try to do it by yourself. And a lot of them are more focused trials now, so you have to know what kind of mutations you have and that kind of thing. So, it’s a partnership where there’s a form that you would need to fill out for us to have that information, and then we help you walk through that process of, is there a trial that’s out there for you; is it something that’s appropriate for you, along with your doctor. And then, how do we help you make sure that you can get through the whole process.

 

Beth Probert:

Wonderful. What a fantastic resource. Thank you.

So, I would like to take a few questions that we’ve received, and, Jim, I’d like to hear your feedback on this one. And the viewer asked, “People keep asking me how I’m doing, and it just makes me worry more.” Do you have any advice, Jim, for people to tell those that love them and just want to help them that all these questions are causing anxiety, what would you suggest, Jim?

 

James Bond:

Yeah, a couple things that I’ve found useful. I explain to them I just got done with playing nine holes of golf, or I just got done exercising, and I’m quick turn it back and say, “How are you doing?” and try to get as much out of the other person, so that they understand that I’m comfortable in my skin, and I’m not stressing out or how things are going.

But it’s easy for people to understand that, hey, this guy’s got an incurable deadly blood cancer, or two, and we worry about him. So, I try to just loosen up, and turn it back on them, and hopefully they get more reassurance that, hey, the guy’s not stressing out, he’s okay. But you know, once you do all you can do, the rest of it is just fate, luck, whatever. So, that’s what we try to do.

 

Beth Probert:

I love that response. And people mean well, but putting the focus back on them is just fabulous. That’s really great, thank you, Jim.

 

James Bond:

Oh, you’re welcome.

 

Beth Probert:

And Dr. LeBlanc, we have a question from Shannon from Boston, and her questions is, “How can I manage the daily stress of like with AML? Are there proven strategies to cope with the stress?” So, we did talk about a few things earlier, but what advice would you give Shannon?

 

Dr. LeBlanc:

Yeah, I’m not aware of proven strategies specifically for AML, which is part of where we all struggle. Not knowing what to do and how to best support individual patients. And as I mentioned earlier, every individual is quite different. but I usually recommend meeting with a professional to talk about it. And some people are opposed to that and they don’t want to do that, but more people are at least open to the idea. And so, Shannon, if you’re somebody who’s open to that idea, I would actually encourage you to seek out a specialist in palliative medicine.

And many people misunderstand what that means. So, I want to just take a moment to explain why I would think that’d be helpful and what the evidence shows. So, clinicians who are trained in palliative medicine are basically experts on well-being. 

They know how to address symptoms, they know how to help with quality of life maintenance, and they know how to help people cope with difficult diagnoses and serious illnesses like cancers. Regardless of the expected outcome. So, they can be helpful if we’re aiming at cure and we think there’s a really good chance of that, and they can be helpful in cases where we know that’s not gonna happen, and anywhere in between.

So, one of the misconceptions is that they can only be helpful when people are dying, but actually, what we found in a lot of research is that when you add a palliative care specialist to the cancer care team, even from the point of diagnosis, that patients feel better, and they do better, and even live longer. Several studies, now, have shown that in a recent medi-analysis that we publish, for example.

So, part of the mechanism by which palliative care specialists help patients feel better and live better is not only by addressing physical symptoms, but also at addressing these difficult emotional and existential kinds of issues.

Helping with coping. How do I get through the day; how do I live with the fear that this diagnosis instills in me; how do I enjoy life? Those kinds of questions are very common. And palliative care specialists are often very equipped at helping. Or even psychologists would be another great resource, where this is a person you’re going to see where the entire focus of the visit on those issues, so that they definitely don’t get pushed to the last 30 seconds of the visit when the doctor has their hand on the door knob and they’re trying to get out to the next patient.

 

Beth Probert:

Wow, and I love what you said that your study shows that people who do seek out the palliative care will live longer. And seeing a counsellor or psychologist too, both of those are just amazing suggestions. Thank you.

We have one last question from Doug from Boise, and, Michelle, I’m going to direct this question to you.

Doug says, he doesn’t know how to find a support group. So, where does he start? Could you give us some feedback?

 

Michelle Rajotte:

Sure. He can start by calling us. We can try to find out if there’s one locally for him. There’s also access to the online chat, which meets in the evening and he can talk with people that way. There’s a lot of different options. So, there’s the traditional support groups that you go to, but there’s other ways of getting support, as well. So, that’s a good way to start. It can be very overwhelming to try to find one. The other thing you can do is if you’re being treated at a hospital, talk with the hospital social worker because they’re usually pretty knowledgeable about what supports are in the area. But I would say those would be the two good places to start.

 

Beth Probert:

That’s wonderful. And Michelle, can you give us your specific phone number and email where people can reach you and your department?

 

Michelle Rajotte:

Sure. So, the number to the Information Resource Center, we’re available Monday through Friday, 9:00 a.m. to 9:00 p.m. is 1-800-955-4572. The other way to access us is through the website, which is LLS, short for Leukemia Lymphoma Society, much easier to type, .org. When you get on there, there’s a way to reach the information resource center either by email, by chat, or the phone number will be there, as well, if you need it. But that’s really the best way to reach us.

 

Beth Probert:

That’s wonderful. And we just got one last question, and we have enough time for it. And Jim, I’m wondering if you have some advice about this question. And it is, “My partner’s often struggling deeply with the diagnosis. I don’t know the right words to say to help him feel better.” Could you give some advice to this topic, Jim?

 

James Bond:

Yes. The weekend I was diagnosed, the very qualified oncologist rightly said in response to my question, “How long do you think I’ll live?” He said, “At most you’ll live three years.” And so, I struggled, my wife struggled, I was in my early 40’s, that weekend was hell. And here’s what got me out of my funk and got us back to problem solving and putting this thing on our agenda to do all we can. I looked back at my own life, here I am in my 40’s, two boys, I’ve been healthy most all my life. And I thought of, there was a real setback, medically I had, a bad injury playing sports when I was in high school, and to me as a high school kid, that was the end of my life. Sport was gone; a lot of recuperation.

 And as I looked back on that with this cancer diagnosis, I said, “You know what, as tough as that was at the time, as devastating as that was, a lot of good things happened because of that setback.” Real things. Like it got me studying a lot more in college, I got a nice job as a result of it. Lots of good things happened. It caused me to overcome things, and I said to myself and my wife, “Hey, we’re gonna make this deadly cancer diagnosis the same thing.” And like all of us I think have been saying: every case is unique.

So, I don’t get bummed out when people give me their prognosis or whatever, or I read something that’s not good. My case is different than everybody else, and we can look at it that way. And in the end, this can happen to any of us. So, it got me off my back, it got us in there fighting, and that’s the way I look at it.

 

 

Beth Probert:

That is wonderful advice, and what I hear you saying is that, really, with your care partner, and your family, and I’ve heard this from Dr. LeBlanc and Michelle, as well, and, of course, Jim, that you’re a team. And finding that way to survive this as a team, so that’s great advice, Jim. Thank you.

 

James Bond:

You’re welcome.

 

Beth Probert:

So, I do want to thank the Patient Empowerment Network for this really impactful program today. I’d also like to thank The Leukemia and Lymphoma Society for partnering with us on this webinar. And I would like to thank our guests as we come to a close to this program. So, Dr. Thomas LeBlanc from the Duke caner institute, thank you so much for taking the time today and sharing the real benefits of the focus on the palliative care.

And Michelle Rajotte, from The Leukemia and Lymphoma Society. Your contribution has been wonderful, the resources that your department does provide. And Jim Bond, it’s just been so great hearing from you and your very long journey with AML, and what you’re dealing with, and how you have made the best life possible, and all of your dedication to advocacy. So, thank you so much for joining us today.

 

James Bond:

You’re Welcome.

 

Beth Probert:

And if our viewers have missed anything or just want to re-watch the webinar, a replay will be available in the coming weeks. Thank you for joining us, I’m Beth Probert, and I look forward with meeting with the AML community again. Thank you.

We thank Celgene Corporation, Daiichi Sankyo, Genentech, Helsinn, and Novartis for their support.