Today, Peggy Burkhard talks with Dr. Amar Kelkar of the Dana-Farber Cancer Institute about the medical side of survivorship after bone marrow, stem cell, or CAR-T transplant. The conversation begins with the important shift from the urgent “save my life” phase to the longer “protect my health” phase. Dr. Kelkar explains that this transition often starts around the 100-day mark, though timing varies by transplant center, geographical region and patient needs.
A major theme is the need to restart routine care that may have been paused during transplant. Dental care, dermatology, ophthalmology, and primary care all become important again. Dental visits are especially important because oral graft-versus-host disease (GVHD) can cause dry mouth, irritation, cavities, and other problems. Skin checks matter because transplant can increase the risk of skin cancers. Dr. Kelkar stresses annual dermatology visits, sun protection, SPF 50 or higher, protective clothing, and smart decisions about sun exposure.
Fatigue is another central topic. Dr. Kelkar describes post-transplant fatigue as different from normal tiredness. It can feel deep, physical, and mental, and it may last for months or even years. He encourages patients to pace themselves, listen to their bodies, and build activity back slowly. Returning to work also needs to be individualized. Some patients work remotely during treatment, while others may need extended disability or a gradual return.
The episode also covers immune recovery and repeat vaccinations. Dr. Kelkar explains that after transplant, the immune system has been reset, and many childhood vaccines need to be repeated. Most programs begin revaccination around six, nine, or 12 months, depending on immune suppression and other factors. He reassures listeners that many patients have fewer vaccine symptoms early on because their immune systems are still rebuilding.
Dr. Kelkar also reviews long-term screening and prevention. Survivors need routine cancer screenings, including mammograms, colonoscopies, lung cancer screening when appropriate, skin exams, and monitoring for thyroid or other changes. Metabolic health is also important. Steroids can affect blood sugar, transplant can change body composition, and quick weight loss often includes muscle loss. Nutrition support and exercise programs can help, and Peggy notes that Blood Cancer United offers nutrition services for patients and caregivers. Blood Cancer United’s nutrition program provides free one-on-one consultations with oncology dietitians by phone or email.
Bone health, hormone changes, sexual health, and early aging are also discussed. Dr. Kelkar explains that steroids, menopause, testosterone changes, vitamin D deficiency, and time indoors can affect bones. Many centers use DEXA scans and vitamin D supplementation. He also encourages patients to bring up sexual health concerns, including menopause symptoms, low testosterone, pain with intercourse, ulcers, or fear about resuming intimacy.
The episode closes with practical advice for everyday life. Food restrictions often loosen around 100 days, but patients should reintroduce foods slowly and carefully. Raw foods, alcohol, tobacco, and inhaled smoke should generally be avoided, especially during the first year. Dr. Kelkar also emphasizes mental health support, counseling, and honest conversations with the medical team. Survivorship is a bumpy road, but the goal is to help patients regain control and thrive.
Blood Cancer United Nutrition Offerings: https://bloodcancerunited.org/blood-cancer-care/adults/food-nutrition
Thanks to this season's sponsors, Incyte and Sanofi.
(00:00) Intro
(01:16) Moving from acute treatment to survivorship
(02:17) Dental, dermatology, ophthalmology, and routine care
(05:45) Fatigue after transplant versus normal tiredness
(08:35) Pacing yourself and avoiding setbacks
(10:26) Returning to work after transplant
(12:24) Resetting the immune system and repeat vaccinations
(16:07) Secondary malignancy prevention and cancer screenings
(18:59) Sun protection and skin cancer prevention
(20:23) Metabolic health, blood sugar, and weight management
(23:58) Bone health, vitamin D, DEXA scans, and early aging
(29:32) Sexual health and hormonal changes
(32:43) Everyday living after transplant
(36:07) Psychological and cognitive hurdles in survivorship
(38:16) Pulmonary function tests and liver monitoring
(40:42) Closing thoughts
Voiceover (00:02):
Welcome to Marrow Masters season 20, sponsored by Sanofi and Incyte. This season focuses on survivorship after a bone marrow, stem cell, or CAR-T transplant and what that entails. We'll be talking with a variety of speakers this season who will share their experiences, advice, coping mechanisms, updates, and tips to enjoy life to the fullest, even if life looks a little different.
The National Bone Marrow Transplant LINK, established in 1992, strives to help patients, caregivers, and families cope with the psychosocial challenges of transplant, from diagnosis through survivorship.
Here's your host, Executive Director of the nbmtLINK, Peggy Burkhard.
Peggy Burkhard (00:40):
Welcome, everyone. So, today we have with us Dr. Amar Kelkar, physician in the Department of Medical Oncology at the Dana-Farber Cancer Institute and Assistant Professor of Medicine at the Harvard Medical School.
Welcome, Dr. Kelkar.
Dr. Amar Kelkar (00:55):
Thanks so much for having me. I'm excited to be here.
Peggy Burkhard (00:57):
So happy to have you here today to cover really more of the medical clinical aspects of survivorship. We have a lot to get to today, and let's start by talking about the important shift from the acute “save my life” phase to the chronic “protect my health” phase that we all know happens.
Dr. Amar Kelkar (01:16):
So, this is, I think, probably one of the phases that we don't talk a lot about upfront, and I think that's something that we're actually trying to change in our program.But the reason for that is, obviously, I think people are very focused on just getting through the scariest aspects of transplant, and all forms of self-therapies, for that matter.
And so, it's exciting to talk about the later phases. Usually, that transition phase happens a little bit later on but it depends on the program where we define the transition in care.
Peggy Burkhard (01:45):
What would be a typical time frame for that?
Dr. Amar Kelkar (01:48):
It really depends on where you are in the country. If you look towards the West Coast, where patients are often much more spread out, that transition happens closer to the 100-day mark after transplants.
And patients still are monitored very closely for both graft-versus-host disease, relapse, infections, and all the late effects of transplant.But on our end of the country, we tend to follow patients a bit longer at our primary transplant clinics before they transition back to their local oncologists or at their regional management.
Peggy Burkhard (02:17):
Interesting. I've never thought about that before. Let's jump in about skin checks, cataract, eye checks, ophthalmology, dermatology, dental care, all the things that are put aside during transplant because we're in let's save our life mode, but they're so important to remember after transplant.
Dr. Amar Kelkar (02:38):
Absolutely. So, when I see patients after their 100-day visit, that's usually when I start to talk about these things. That's around when we transition patients off of having the most restrictive neutropenic diets that patients often hear about.And so, that seems like a good transition point to start talking about longer-term care.
It also happens to be when the kind of highest risk period for graft versus host disease, at least the acute types, tend to die down. And so, it seems like a good point for patients to start thinking about their longer-term health.
And so, when I see patients at the clinic, that's usually the visit or around that time as long as they're feeling okay, is when we start talking about setting up things like dental care follow-up. And we know it takes a little while to get into the office for a specialist. So, it's a good time to say, “Hey, why don't you schedule your visit for a follow-up with a dentist around six months after your transplant?” And this will vary person to person.
Some patients may not have seen their dentist for quite a while before the transplant, they may have had a dental clearance, but they may not have had a full cleaning.And so, they may want to schedule that a little bit earlier versus ones who are a little further out or may be on antibiotics for an infection or be on more immune suppression, may, in fact, want to do that a little bit later, but roughly around six months is the spot there.
And then we want them to really see their dental care about every six months thereafter, just like normal cleaning schedules.And then for individual patients, if they have certain needs, they have had more frequent cleaning needs or other dental care that they needed, that's around the time when they could restart it, with the exception of major surgeries where we might want that to wait until a year or more after transplant.
Peggy Burkhard (04:10):
To that note, I know there are many survivors who have had graft-versus-host disease who have told me through the years that they wish they would have paid more attention to their dental needs because of the dry mouth, and then the need sometimes for teeth being pulled because of graft-versus-host disease. So, there are so many reasons to remember to go to the dentist, it seems like.
Dr. Amar Kelkar (04:32):
Absolutely. And when we think about that, obviously, I was talking just about general dental care, but you're absolutely right that there's a very tight interaction between dental health and oral health in general, and patients are having graft-versus-host disease. So, around the time of those first 180 days is sometimes where patients may start experiencing some of the early symptoms of oral chronic graft-versus-host disease.
And as you mentioned, that might be something like dryness in the mouth or irritation or redness of their gums.And that often translates to more dental issues in terms of cavities or other dental procedures that they need in addition to oral treatments like steroids that might make their dental health worse.
Those are all reasons why seeing their regular dentist is so important. And then sometimes even seeing an oral medicine specialist, which is usually an MD who also specializes in dental care or oral medicine care.
They're usually dual-degree docs. We'll see patients and help manage these issues more closely, and they can help both with (depending on their practice) their routine dental care as well as their specialized care or sometimes, they'll work with the patient's primary dentists to kind of split that care up.
Peggy Burkhard (05:45):
Good to know. Moving on, so, Doctor, talk fatigue. We know that is a huge issue. Any transplant that you have, it's just one of the things we hear the most. Let's talk about how that is different from feeling tired.
Dr. Amar Kelkar (06:00):
So, I think when we talk about tired, a lot of times patients have to orient themselves to what tired felt like before transplant, before their diagnosis that led to their transplant. And that tired before could be working a long day, maybe they were physically exhausted, maybe they were mentally exhausted, maybe they were very stressed.
And tired after transplant, fatigue after transplant is a different beast. This is like that kind of bone tiredness that just does not go away. And oftentimes, it really has both a physical and mental or psychological component that wears patients down because they'll have gotten past that initial phase of recovery from chemotherapy from their transplant, they'll have gotten past all the recovery.
Maybe they've gone through steroids or some other graft-versus-host-disease treatment that contributes more to fatigue, and then they get through all this, they recover and they are starting to grasp at why they don't feel right.Why they feel like 80 or 90% of the way to where they are used to feeling but not quite all the way there.
It is often what we call multifactorial. There's many different potential causes. We certainly have to look for biological or organic causes like having their thyroid function be reduced or having electrolytes being off or being low on fluids or a medication side effect, or some other condition that is less common.
These are all things we have to factor in as we think about fatigue. But once we've checked and ruled those out, which are all part of the routine management of transplant, we have to start to think about and counsel patients on the idea that the fatigue may last quite a while.
I have patients who get to two or three years out from transplant before they start to say, “I'm really starting to get my energy back.” And this is all happening for patients with an average age somewhere between 50 and 70-years-old. And so, these are patients that are going through physiologic changes. For women, they may be going through menopause and for men, they may be going through changes in their testosterone.
There's a whole bunch of other factors that are happening that are age-related, changes that are happening alongside this, because if you were diagnosed a year or six months before your transplant with something, by the time you're getting out of the most acute period, you might be two years older or more before you start to think about that, and all the other things that happen to your body at that time.
So, there are both those organic causes and then there's the physical fatigue which just tends to linger on and on and on. And there's a big frustration, but for a lot of patients, does eventually get better or go away entirely.
Peggy Burkhard (08:35):
Yes. And I love this conversation. There's also the idea that they can conserve some energy and learn to read the signs and maybe not have a day where you're gardening for seven hours, but maybe you garden for an hour or two and you do it every day versus having that day that you overdo it and then you're in bed for three days. So, I think that's important.
Dr. Amar Kelkar (08:59):
Yeah. No, you're describing exactly what I tend to hear patients say is that, “Yeah, I tried to do stuff exactly like what I did before and I felt great that day and then the next day and the day after that, I was on the couch, I was passed out. I was napping for half the day,” kind of feeling a frustration that they can't keep up with their old selves.
It's something that acts as a barrier. And oftentimes, really, as you described, that concept of pacing yourself, of building yourself back up is so important.And it's so hard to meter out because it's so different from person to person because of all the different reasons why that fatigue lingers.
Peggy Burkhard (09:32):
And I think your body tells you if you listen, what is too much. And we tell patients, just learn from the day you did overdo it, just learn from it. Just don't do it again or try not to.You know, we're all human and I love the part where you said, “We're all aging.”
I have friends that I laugh because they're blaming their cancer or their survivorship on why they can't do what they used to.And I will say to them, “I can't do what I used to. I try to.” So, give yourself a break that some of it is just that we're naturally aging and we can't do what we did when we were 40 necessarily (laughs).
So, moving on, Dr. Kelkar, could you share some strategies for managing energy as it relates to returning to work? For many, this is such a big topic, returning to their life or a lot of times, work.
Dr. Amar Kelkar (10:26):
You know, returning to work is one of those big challenges and it's very much person to person dependent. I have patients who work through their transplants remotely, and then eventually, if they need, transition back to in-person work later.
And some patients who are still so fatigued that a year out from transplant, they need some additional documentation to explain why they can't return to full work capacity or even need extended disability leave during that time.
And it's hard to explain that upfront to patients. It's even harder to explain it to their employers, although thankfully, there are a lot of legal processes and mechanisms to help patients kind of get through that.
But in terms of counseling, the advice I always give patients is just similar to what you were saying earlier. One is listening to your body is so important and not holding yourself hostage to the idea that you are going to be able to do everything you did before right away or even in the near term. And then another part of it is really building yourself back up.
We talk so much in our practice about the need for walking for low intensity, low stress kind of activities and exercise and really starting to kind of take that in a stepwise manner and understand that it's not going to come all at once.
I have patients who are on their Pelotons working out day 30, which debatable depending on where your platelets and everything else are. And I have patients who are just getting back to be able to walk around their living room 70, 80, 90 days out from transplant.
And for each of those patients, they recover at different paces, and it's what I call a bumpy road. It's not like a straight uphill path to recovery for the vast majority of people.Some people, it's stepwise, they'll go up to a level and get better and stay there for a while and then keep going up in that pattern, and some people, it's bumpy.
They'll be uphill one week and then the next week they really take a slide back the week after they make some more progress and that can be very emotionally taxing on patients. And so, we kind of have to remind them, you have to trust the process and like you said, listen to your bodies.
Peggy Burkhard (12:24):
Yes, I love the bumpy road analogy, it's so perfect to describe it. So, let's talk about resetting the immune system post-transplant, and really the importance of following the repeat vaccination schedule.
Dr. Amar Kelkar (12:39):
This is one of those things that we really try to counsel patients on ahead of time because I can imagine kind of shocking to be told if you didn't know ahead of time, yeah, you need to have all or most of your childhood vaccines again, that your immune system, like you said, has been kind of had a reset hit on it in some sense.
And this is true for patients who are going through autotransplants and allogeneic transplants, as well as CAR-T.And so, we have to kind of remind patients, everyone's immune systems recover at different paces.
There's varying amounts of understanding of how much comes over from donors for people who have donor transplants. But we know in general, people tend to have big gaps in their immune system after transplant.And the best way to close those gaps and make sure that they're not exposed to something that is a preventable illness is to get revaccinated. It's just so, so important.
And we have decades of experience with this in transplant, combined with all the decades of vaccine research that we have outside of transplant.I actually happen to be on the American Society of Clinical Oncology guideline panel for vaccines and was one of the docs in charge of reviewing the aspects of that guideline related to bone marrow transplants.
And one of the things that we talked about was how much or how little to include in there because it's such a niche population. Other cancer patients often go through vaccines at a usual pace and our patients really have to kind of start from scratch and so, it is a unique need and it's just so, so important that you get those.
And centers start at different times, but largely, you're going to see most people, other than annual vaccines, which may start sooner than six months, most programs are going to start their vaccines at 6 or 9 or 12 months afterwards.And this gets adjusted just a little bit based on the timeline of when you've come off immune suppression and other things like that.
So, if I have a patient on high dose steroids, that vaccine may not be effective at that point. So, I'll often push that off until their steroid dose gets low enough where we think they're still able to mount a good immune response to that vaccine.
Peggy Burkhard (14:42):
That's interesting.
Dr. Amar Kelkar (14:43):
And one of the things that I do try to tell patients, which is some saving grace in some sense, is that most people don't have a lot of symptoms from their vaccines during that first year.And the reason is because you have a baby immune system in some sense, things are restarting.
And so, a lot of reasons why we have such strong immune responses. A lot of us remember, for instance, getting, say, the COVID vaccine or the flu vaccine or some other vaccine and having a fever for a day or two or body aches or nausea or a whole bunch of other symptoms. The reason we remember that is because our immune systems were firing at full capacity. And that's actually a great response usually. That's kind of what we want to see.
We don't want to feel sick or get sick, but we want people's immune systems to respond to that vaccine and show that it's holding on to that in some sense.
Peggy Burkhard (15:27):
It's almost like it's working.
Dr. Amar Kelkar (15:29):
Yeah, exactly. So, after transplant, in some sense, because you're like a baby, your immune system is so young, you don't have necessarily that same kind of strong or robust kind of immunologic response to the vaccine. You'll have enough that you'll be able to make antibodies and form an immune response to it when you see that infection in the future, but you won't have that same strong response.
So, most of my patients kind of say, other than a little bit of arm soreness from getting a poke, they don't really have much symptoms in that first year after transplant. So, for folks that are anxious about that, they find that to be a little reassuring.
Peggy Burkhard (16:02):
I think that's really reassuring. So, I'm glad we're talking about that.
Dr. Amar Kelkar (16:06):
Absolutely.
Peggy Burkhard (16:07):
Let's touch on secondary malignancy prevention and really why screenings are so important as well post-transplant.
Dr. Amar Kelkar (16:16):
So, with secondary malignancy prevention, a lot of this hooks you back in to some of the primary care things that you were probably either doing or maybe entering the age range of doing before you went through a transplant.
So, for instance, young women who are approaching the age or in the age range where they might need breast cancer screening, it's getting people back on that schedule of having mammograms or ultrasounds or MRIs or whatever your physiology or body needs for that type of screening.And for other folks who are approaching that 45 age threshold or earlier, depending on family history, we're talking about colonoscopies again.
And for people who are smokers before the transplant (this is an important one), people who are smoking quite a bit or even had quit several years before a transplant, they might need to get hooked back into lung cancer screening again.And there's a whole bunch of others.
There's also just screening that we watch for in terms of new symptoms. For instance, if you develop new thyroid changes, we might be looking for things like thyroid cancers.I've seen several patients develop that and it may or may not have been related to the transplant, but it's certainly something that we have to watch out for or things like skin cancers in particular.
And we didn't touch on it earlier, but this is one of the main reasons why skin cancer screening with a dermatologist is so important. We actually have patients here who see their dermatologists once a year onward, regardless of prior evidence or signs of skin cancers because that screening is so important.
And really to have that skin exam by an expert who can spot early signs of skin cancers and mitigate them. The thing with skin cancers is if you catch them early enough, just like colon cancers, you can actually remove the earlier precursor cancer and prevent a more serious cancer that could be life-threatening. So, it really, really is so important to do that on an annual basis.
And if you're someone who's high risk that your dermatologist recommends more frequently than one year, we always support that because we know that transplant does increase that risk of skin cancers.
And unfortunately, transplant because of chemotherapy exposure and a changed immune system really does slightly increase the risk of all other secondary malignancies or cancers afterwards. And it's why we take it so seriously that screening and regular primary care visits and other specialist visits are so important.
Peggy Burkhard (18:41):
I'm glad you mentioned the skin stuff because I realized we went right over that, but it is so important to talk about the skin because it probably is one of the main complaints or as it relates to graft-versus-host disease, we hear a lot about skin issues. So, I'm so glad that you brought that up. Thank you.
Dr. Amar Kelkar (18:59:
One other thing on the skin that I do want to impress on folks is that importance of minimizing or controlling direct sun exposure. And we talk about that after the transplant. Obviously, there's a clear relationship between sunburns and skin cancers and graft-versus-host disease. But in general, we know that that's all tuned up after transplant. And so, the importance of applying high enough SPF skin or sunblock, I should say.
Having that high enough SPF is really important. And it's going to be different based on your skin tone and your prior history of burns and things like that. But in general, most people are applying SPF 50 and above is what I've seen from my patients to prevent those burns and skin irritations that happen from the sun after transplant.
Peggy Burkhard (19:40):
And also, I will say, we've done several programs on this where there are even doctors and fellow patients that talk about the clothing that has the SPF in it, and I thought that was really neat. There's some great brands out there now.Really, after transplant, you should avoid the sun as much as possible. We all know that. And the umbrella is your best friend and this clothing, too, you can still be outside, you just have to be smart about it.
Dr. Amar Kelkar (20:07)
Exactly. I don't want people to be scared of going out. I have patients who travel quite a bit and really felt like that was freeing after being locked down for so long.But it's just about protecting yourself in the smartest way possible and making smart decisions in conjunction with your transplant team.
Peggy Burkhard (20:23):
I really like that. Sometimes the extremes are tough for survivors because they finally got their life back. So, I really like how you worded that.Thank you. So, Dr. Kelkar, what do you tell your patients regarding their metabolic health and weight management?
Dr. Amar Kelkar (20:38):
So, with metabolic health, there's a few systems that we're monitoring closely. We're obviously watching blood sugars closely because a lot of patients have been exposed to things like steroids that can really drive up the sugars.And so, the risk of developing diabetes is there or even, if not diabetes, just kind of higher blood sugars related to those steroids that need to be monitored and managed very closely.
Similarly, we're watching, as I mentioned earlier, for things like endocrine changes to our sex hormones. So, things like early menopause for people who are born women and testosterone for men.Those are things that we're watching very closely. We're also keeping track of things like weight and obesity. It's common with transplant that people lose quite a lot of weight, so we have to watch on the low end early on.
But unfortunately, because that weight loss happens so quickly, just like what we're seeing right now in the world with a lot of people on weight loss drugs with things like GLP-1 agonists, that weight loss that happens tends to be mostly muscle-based fat loss, or if not all muscle-based fat loss, more so than what is typical of healthy weight loss.
And so, when patients tend to build back, unless they're actively managing things like exercise and diet carefully, that weight gain that comes when people start to bounce back tends to be more fat gain.
Peggy Burkhard (21:57):
Oh, wow.
Dr. Amar Kelkar (21:58):
That can lead to long-term endocrine and health issues. And so, it's something that I counsel patients on watching very closely for. I don't want them to feel bad about gaining weight after transplant.They've lost so much and it really is important for them to be able to eat what they want to eat, especially when they're restricted on their diets, so it's a balancing act.
Obviously, we have to treat ourselves in some sense and allow ourselves to heal the way we need to heal.But keeping in mind that those weight gains can become problematic and harmful to our long-term health if we gain a lot of weight in a very short period of time back.
And especially if it tends to be mostly places like our bellies that the weight is coming back, that can be a risk factor for future things like obesity, heart disease, and diabetes. And so, it's just something that we have to be conscious of and work with our primary care colleagues and other specialists to really make sure that we're helping our patients get through that.
Again, not in a way to shame anyone because obviously, like I said, patients have been through an incredible amount of trauma to get here. But trying to make sure that what happens is healthy and that it doesn't affect their long-term health after going through all this trouble for them to get through their cancers or other blood disorders.
Peggy Burkhard (23:05):
I love your empathy. It is really remarkable. And I think your patients are so lucky to have someone like you to guide them on that.And I did want to mention Blood Cancer United also has a wonderful, wonderful program for nutrition. They'll do one-on-one consults and they have information specialists ready to go to help with all of these diet-related issues. So, I will put that in the show notes as a great option.
Dr. Amar Kelkar (23:32):
That's a great point. They offer that and if your cancer center or transplant center has a nutritionist access or access to exercise programs or anything like that, always feel comfortable asking about them because it's one of those things that sometimes in the course of our transplant treatments, we're not always thinking about that, we're trying to make sure that you are alive and well and healthy and moving on from your diseases. And a lot of centers have these resources, and so make liberal use of them.
Peggy Burkhard (23:58):
That's a great reminder too to check with your center and what's available. So, Dr. Kelkar, why is bone health and early senescence so important post-transplant?
Dr. Amar Kelkar (24:10):
So, with bone health, again, we talked earlier about exposure to things like steroids during the course of cancer treatments or transplant treatments. And with that exposure to steroids as well as just things like being indoors and out of sunlight, and maybe having reduced things like vitamin D and aging and weight loss or weight changes, all these things contribute to changes in our bone health that ultimately, can lead to an increased risk for fractures.
And so, a lot of centers, ours included being in the Northeast, have their patients on long-term vitamin D supplementation, which can certainly reduce the risk of thinning bones and early aging from that perspective. And then we also monitor for symptoms related to menopause because again, menopause in people born women can cause an increased risk in bone thinning or fractures related to that.
This is called osteoporosis.I try not to use the medical terms too much, but that's really what we're worried about. But those are kind of the factors we're looking at. But we screen everyone with usually, what's called a DEXA scan.
It's just a fancy X-ray really, but it'll be a kind of a whole skeletal X-ray with radiologists reviewing it in a really special way to look and see if the amount of bone thinning is a certain amount where you're at increased risk for first thinning and then eventually, increased risk for fractures. And once that crosses a certain threshold, we're going to be looking at treatments to actually reverse that bone thinning and reduce your risk for fractures.
And so, this is something that we do in a lot of people related to aging, it's just more common after transplant. And so, that's part of where that goes in. And with early aging in general, this is something that we have to watch for.
It's still actually an area of development in transplant. We know that people tend to be aged a little faster, and part of that is related to all the things we've been talking about. The increased risk for secondary cancers, the increased risk for skin disease, lung disease, oral disease, all these things.
And none of these are massive increases, by the way, I don't want people to be feeling terrified that something horrible is going to happen, but these are all tuned up just a little bit, and so, we just have to watch a little bit more carefully for them.
So, some of that is related to that accelerated aging that can come sometimes from transplants. Some of it's related to things like the weight loss and bone loss, like we mentioned, that happens with transplant.Because a lot of patients going through transplant tend to be oftentimes healthier in other aspects of their life to be in good enough health to go through a transplant.
Although that's not necessarily the case always, it's changing.We're getting better and better transplants so everyone is more and more able to go through it. But in general, we have very healthy patients going through transplant other than the reason that they have their transplant.And so, when we think about what happens with the transplant, is that we'll see them kind of take a jump.
I described this once to one of my patients who was about 76 years old going through his transplant, definitely on the older end. And this is a guy who was teaching Tai Chi and doing all these amazing things right up to his diagnosis, and even through his diagnosis and now after transplant.But he used to say, “I feel like a 50-year-old.” And I'm like, “You kind of look like a 50-year-old going in.”
And now, he's aged a little scooch closer to his biological age because of the transplant, and he's still doing all these great things. And that's just an example of what we see is that people are not going to feel quite as robust as they did before.
Another example of this is actually in vision.So, we didn't talk about ophthalmology earlier for screening. We also recommend annual ophthalmology visits specifically with an ophthalmologist and a physician of the eyes.
And the reason is because we want them doing these more intensive, comprehensive eye exams.So, not just looking for changes in your vision related to your prescription, which is very important and does happen, but also changes to your eyes related to aging.
So, we may see things like early cataract development for people who were prone to getting cataracts already. So, if you were to get development maybe 10 years down the line, you might develop it sooner after a transplant because of those exposures and changes in your body from the transplant.
And other eye-related changes could happen too, as well as graft-versus-host disease of the eyes, which can be sometimes very hard to catch unless someone's looking very closely at your eyes if you're not having really overt symptoms, or if you're someone who's already prone to having dry eyes before going through all this. And so, it's just one of those things that we have to watch really careful for.
But basically, every system goes through that senescence or accelerated aging after transplant to some extent. And so, it's just about watching very carefully and again, being aware of those changes and pacing yourself again, like we said before, to make sure that you're not putting yourself in a situation where you're not going to be set up for success.
Peggy Burkhard (28:48):
Well, it sounds to me like people are going to come out of transplant healthy and fit and ready to go (laughs), ready to enjoy their lives.
Dr. Amar Kelkar (28:57):
And that's really the point is that all this is just to talk about things that could happen, that may happen, that may happen a slight amount. The vast majority of our patients are doing great after transplant, especially once they get out of those first two years. If they had other health issues, they're still dealing with those, but a lot of my patients are just living their lives doing the things that they would have been doing before.
And so, this is not to scare people or make them feel worried that something bad's going to happen, but more to say that by doing a lot of these things that we're talking about, by going through that kind of survivorship program after their transplant program, that they're going to be set up to really go on and thrive.
Peggy Burkhard (29:32):
I totally agree. So, Dr. Kelkar, let's talk about sexual health and hormonal changes that can be expected. And obviously, this is just not talked about enough.
Dr. Amar Kelkar (29:43):
No, I agree. I think it's a sensitive topic and it's very much patient-dependent. We have patients who are young women who are going to be going through potentially, especially if they have an ablative transplant or high-intensity chemotherapy, maybe going through menopause changes quite early in life compared to what they would have experienced otherwise. And that's something that we don't talk often enough.
I definitely recall a lot of patients who started complaining about hot flashes or bone pain or things like that, and because they're not describing it that way because they're not used to thinking of it that way in other ways, and it's kind of requires translating it back and recognizing that we're missing something really common, actually, that's happening.And just treating them oftentimes with hormone therapy is enough.
And then they go through those menopausal changes, and sometimes later on, they don't need it. And then we talked about bone health being a part of that endocrine health as well, but those are some things that we do think about.
In men, we mentioned a little bit about testosterone, and definitely, there are age-related changes to having lower testosterone because of the chemotherapy from cancer therapies as well as transplant. Sometimes we can see the hormones that stimulate release of testosterone. So, this is like upstream one step can be decreased as a result of those treatments.
And so, we'll often have to check testosterone six months to a year after transplant and potentially, put patients on replacement therapy that way as well.And that can often help with energy and mood and strength a little bit for patients who are feeling like they're fatigued or things like that are lagging behind.
The other aspects of sexual health, there are components of graft-versus-host disease for patients getting allogeneic transplants that are kind of related to sexual health. And so, those are things that it's also important to bring up with your docs.
If you are noticing, say, ulcers or having pain with intercourse or things like that, sometimes especially depending on generation and background, it can be uncomfortable to talk about experiences with kind of resuming having sex or whatever relationships you have. But it is really important to talk about them and your docs and NPs and PAs and whoever you're seeing as part of your care are ready to talk about those things.
It is really important that you bring those up because I've had patients who waited a whole year after transplant before they had sex for the first time and not because they didn't want to, but because they were scared to ask.
And it's sometimes, again, in the course of waiting to recover from everything else and us monitoring other things, it didn't occur to me to bring that up that, by the way, it's totally okay to resume that. And obviously, talk to your doctor individually about if there's specific reasons why you might need to wait longer.
But for the vast majority of people, once they're no longer neutropenic and their platelets are no longer low and they're feeling good enough, then it really is about their own needs and them and their partner's decisions about the right time as to when to resume those sorts of things.
Peggy Burkhard (32:35):
And that connection again.
Dr. Amar Kelkar (32:36):
Exactly. And feeling normal, I mean, that's an aspect of normal, healthy life for a lot of people.And so, it's just about finding the right time to do that.
Peggy Burkhard (32:43):
Thank you. So, Dr. Kelkar, again, we're talking about the survivorship phase this season, season 20. Do you have any general guidelines for everyday living?
Dr. Amar Kelkar (32:55):
Yeah. Again, obviously, this is going to be center-dependent and when you transition to that survivorship phase of care. So, obviously, with those caveats, the general rules I have that we provide for our patients have a lot to do with when they can do things like resume eating food from outside the home, and when I say that, I mean prepared foods outside the home.
I think a lot of centers are going to allow things like frozen foods or food cooked at home with their own specific precautions. But when we talk about things, I generally say things like takeout. We use a general estimate of somewhere around 100 days when patients would start getting that food outside the house.
I still generally strongly encourage patients to eat their food fresh, hot, and really not save leftovers in the first few months after the transplant- just because of the risk of food spoiling or food-related illnesses.
But once patients start to come off of a lot of their immune suppressants, and then that will vary based on their disease, based on their transplant center, and a whole bunch of other factors, that's usually when we start to loosen those precautions. When that change happens, it will depend a little bit, but generally for us, at least at Dana-Farber, where we talk about 100 days being a pretty big threshold for that.
And then when it comes to expanding the foods, at that point, I generally tell patients to start reintroducing foods at a slow pace. If you haven't had something in a while, and you're going to try it, obviously, with all the caveats of try it fresh, and if it's cooked, try it hot, and if it's a fresh thing like a fruit or something like that or vegetable, make sure that you wash it before eating it.
But with all those things in mind, trying to introduce new foods in a slow basis so that if you do get sick, if have an upset stomach or feel nauseous or God forbid, have a fever or something like that, that you know what you recently had, and you can tell your doc so you can, one, know to avoid it and, two, seek out care pretty quickly.
But in general, most patients, in my experience, have not had too many foodborne related issues after that first 100 days. And I still say things like raw foods. So, if you talk about raw meats, rare meats or medium rare meats, raw honey, things like that, I still am telling patients to wait until about a year after transplant before reintroducing those things.Unless, again, if you're cooking these things fully.
So, if you're getting a steak and you're cooking it to well done or using raw honey but you're fully cooking it through, then that changes a little bit, but those are general things.
And then the other things, lifestyle-wise, I just like to mention when it comes to, say, alcohol use or tobacco use or inhaled smokes, in general, obviously, I prefer patients, especially for tobacco use or any inhaled smoke, stay away from that entirely afterwards. But especially that first year is really important to avoid them.Those are the things that we talk about with patients at a time.
Same with alcohol, to really try and avoid it at minimum for that first year. We know alcohol and tobacco smoke and any inhaled smokes are all risk factors for multiple different cancers.They're carcinogens. So, in general, we want to avoid them.
But understanding those are part of our society, at the very least that we're avoiding them very, very much that first year to avoid both graft-versus-host-disease-related complications, as well as other organ injuries that can make them sick.
Peggy Burkhard (36:07):
Very good. Thank you. So, what about psychological and cognitive hurdles that you see in early survivorship?How do you help your patients overcome that?
Dr. Amar Kelkar (36:20):
And this is very much going to be patient-to-patient dependent. But with those sorts of things, I think some patients have difficulties with anxiety related to, one, their original diagnosis and relapse. And oftentimes, connecting them with counseling to deal with things ranging from anxiety disorders to PTSD, to depression to more severe complications can be really, really important early on.
And so, as for patients, I'd say the important thing is asking for help, telling your docs and your whole medical team how you're feeling throughout the process and let them connect you with the necessary care.
Most centers will have some requirement for seeing a social worker ahead of time. So, you will have already seen someone most likely preceding your transplant who might know about your underlying psychosocial health issues, whether you have any or none.And so, that might be the first person they'll connect you with before maybe referring you over to a psychiatrist or therapist or someone else.
And when it comes to just general coping with a lot of the stressors, I think in general, making use of your medical team just to talk through what things you're worried about or anxious about are so, so important.
A lot of times, just a conversation with my patients talking about, hey, we talked about sexual health, or we talked about going out to a restaurant or we talked about travel or any number of other things that might be causing anxiety can just help clarify the uncertainty.
And that alone can go a long way towards helping patients really start to feel like they're getting more control back in their lives. And also, that's a big aspect, is you give it up a huge amount of control through transplant and getting just a measure of that back even goes a long way towards feeling a little better.
Peggy Burkhard (37:56):
And enjoying life again. We've had survivors say, “I didn't work this hard to stay alive to not enjoy my life post-transplant.” And I just love that (laughs).
Dr. Amar Kelkar (38:07):
I think those are the big things. Obviously, every person's going to have their own unique needs, and I don't want to minimize those, but I think that hopefully these are helpful general guidelines.
Peggy Burkhard (38:16):
They sure are. Thank you. Let's talk about the role of pulmonary function tests and liver monitoring in detecting the silent changes early and why this is important.
Dr. Amar Kelkar (38:27):
You know, the big thing with pulmonary function tests, we do them before the transplant to look at lung health. There's two or three domains that we are looking at.Primarily, those related to how flexible your lungs are in terms of expelling air and how good your lungs are at filtering in air and out carbon dioxide and other gases to optimize your ability to get oxygen into your system and feeding your organs.
And so, changes related to that can happen after transplant for a number of different reasons. The most common ones could be related to chemotherapy or graft-versus-host disease.And when I say common, I mean all these are relatively uncommon. We don't expect a lot of patients to have long-term lung diseases after transplant that didn't have them before.
But we know that transplant can accelerate these things sometimes and in the case of lung graft-versus-host disease. It can accelerate them as soon as six months or so after the transplant on for several years. And so, that screening with lung function tests or pulmonary function tests on a relatively regular basis is really important.
Now, there are lots of reasons why people can have delays. If you have underlying lung disease, that care might be managed by your lung doctor or pulmonologist. Patients are having frequent illnesses, especially respiratory illnesses, that can falsely make those tests look lower than they really are at baseline. And so, for those patients, they may get delays. And so, there's reasons why they may not happen on as regular basis like every six months or every year.
But in general, it's a useful way to keep track and make sure that we're not missing early development, especially lung graft-versus-host disease, which is so important because it's one of those diseases where once you have it, it's very hard to reverse but when patients get treated, oftentimes it will halt in its track, so it will get worse.
And so, if you catch it really early, maybe even before someone is starting to have symptoms and start treating it, that's the hope. That's a lot of the clinical trials right now related to lung graft-versus-host disease are focused on that aspect.
Catch it early, treat it early, prevent it from getting worse, and maybe someone never really has to live with a long-term lung disease or end up on oxygen or something like that, which is one of those few rare complications of transplant that we really take so, so seriously, even though it is rare.
Peggy Burkhard (40:42):
Sure. Oh, that's good to know. So, Dr. Kelkar, thank you so very much for being with us today. We covered a lot, and I think that this is going to go a long ways to helping folks feel so much better in survivorship. Thank you for your time today.
Dr. Amar Kelkar (40:57):
Thanks so much for having me. It's been a real pleasure talking with you and know some of the topics of interest for your community and really excited to put this information out there and hope patients, if they have any questions, feel comfortable reaching out to me or to their own docs about some of the things we talked about.
Peggy Burkhard (41:12):
Absolutely.
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Voiceover (41:13):
This has been the Marrow Masters Podcast. Please share this episode with someone you think would benefit from it, and don't miss future episodes of our show. Follow Marrow Masters for free on Apple, Spotify, YouTube, or wherever you're listening right now.
Marrow Masters is produced for the National Bone Marrow Transplant LINK. Established in 1992, the nbmtLINK strives to help patients, caregivers, and families cope with the psychosocial challenges of transplant, from diagnosis through survivorship.
The Marrow Masters Podcast is produced by JAG Podcast Productions, online at jagpodcastproductions.com.