Strive to Thrive: How to Protect Your Health after an Autologous Transplant

Learn From Dr. Peter McSweeney what you can do to THRIVE after an autologous transplant.

Presenter: Peter McSweeney MD, Ch.B, Colorado Blood Cancer Institute at Presbyterian St. Luke’s Medical Center  

Presentation: 46 minutes.


Autologous transplants (transplant using your own cells) are most often used to treat patients with multiple myeloma, Hodgkin Disease and non-Hodgkin Lymphoma. Potential late effects after transplant require life-long monitoring to ensure a good quality of life.

Highlights of Talk:

• Autologous stem cell transplants are now a treatment option for older patients, as well as younger patients

• Depending on the disease, the goal of an autologous transplant  may either be a cure, or a prolonged life with fewer disease symptoms

• Relapse (the disease comes back) is the most frequent cause of death in autologous transplant survivors.

Key Points:

01:19   Steps involved in an autologous transplant 

03:51   Why choose an autologous transplant rather than an allogeneic transplant?  

09:16  Some patients may need additional therapy after transplant to reduce the risk of relapse. 

15:29  Bone loss is a frequent side effect after transplant that requires treatment. 

18:29  The patient’s immune system will not function normally for several months after transplant. Re-vaccination is recommended by a year after transplant.

21:27  Fertility and sexual health can be adversely affected by transplant.  

27:35  Patients have an increased risk of developing heart problems after transplant.

31:32  Peripheral neuropathy is common after an autologous transplant

32:27  Secondary cancers are a major concern after autologous transplant

35:48  Chronic fatigue and sleep problems are common after an autologous transplant.

Transcript of Presentation

00:00  Overview of Talk:  Well, thank you everybody for coming out on such a nice day. This is a talk, which is not going to be super formal, and there is a fair bit of data in your packets. I do not necessarily want to speak to every slide in a great amount of detail. I want to give you the flavor of what it is like to be post autologous transplant. I will summarize a little bit of data in the field, give you an idea of what is being done, and what the outcomes have been.

I have already had the pleasure of running into some of my former patients, and we are always learning new things, and sometimes it is when we are sitting here in these meetings that people tell you things that you had not heard, or did not know about. I will touch on that a little bit in one of my slides later. Just to go back and review what an autologous transplant procedure is about—and you all know this—but it helps you think about why things happen after transplant, and why there may be implications of this therapy for long-term care.

01:19  Steps involved  an autologous transplant:  It is not a natural undertaking, of course, so before one comes to the transplant procedure, there is the pre-transplant therapy to try and make the underlying disease go into remission or get to the lowest possible state. That [process] means exposure to medications, chemotherapy type drugs. 

Then there is the collection and storage of your own stem cells, which are either collected after a strong dose of chemotherapy, or shots into the skin to mobilize the stem cells into the blood. The stem cells are put under stress with this approach.

And then there is the use of high-dose chemotherapy, which is the operative part of the treatment, to try and kill the cancer cells to the best of our ability. 

Then, in some instances, there may be ongoing post-transplant therapy directed towards trying to further enhance the effects of the treatment. The body encounters cumulative toxicity from these treatments.

In these days, we are taking older and older patients to transplant, who have already acquired the effects of the years on their body. The potential for side effects and long-term issues, is probably greater in older folks. 

This just summarizes the transplant for myeloma. You can see the chemotherapy given just before the transplant. Previously frozen, now thawed cells injected on day zero. Then you go through this really pretty horrendous time, where you do not have any blood counts, the chemotherapy affects you at the max. As some of you will probably remember, you cannot eat and drink very well; could get fevers; [need] blood products; and you need a lot of care just to get through this. 

For some of us in the field, autologous transplants may be thought of, "well, it's all over at this point, okay. You have recovered, you are getting over the side effects, you just need to get stronger." It is not really entirely like that. 

It is true, however, that most long-term follow-up after transplant focuses a lot on allogeneic transplant recipients, and to a less degree on autologous transplants.  that is true, it has been true in our program, where we are more formal in our assessments after donor transplantation than autologous transplants. That is probably something we have got to look harder at and change in the years going forward. There are a good number of reasons for that, which I will not get into today. 

03:51  Why choose and autologous transplant rather than an allogeneic transplant?  Just to recap whom we treat with autologous transplant:  usually there is not a choice of allogeneic transplant versus autologous transplant as a treatment for the disease we are facing. It is usually a pretty clear-cut decision, although there are some circumstances when it is a little bit of a question as to which would be the best way to go. Certainly, in terms of long-term side effects, if you had a choice, you would use this approach. 

Now these three at the top here [multiple myeloma, non-Hodgkin lymphoma, Hodgkin lymphoma] are the main diseases we do autologous transplants for. There are a scattering of patients with other diseases. These [germ cell, neuroblastoma] are in the pediatric age group. Then more recently, there has been adoption of this therapy for some autoimmune diseases; and there have been clinical trials, which have actually demonstrated effectiveness. We expect this to be an increasing part of our work in the future.

04:44  Slide showing autologous transplant is now offered to older patients than in the past: This is the landscape of autologous transplant in the United States over the last 16 years or so. This is actually data back to 2016. What it shows you—and it is really quite an interesting trend—if you look at 2016 here, you can see that in the green and orange, which are patients over 60, about half the transplants are from that age group now. That is a big change from back in 2000, when not only were there a lot fewer autologous transplants done, but the age group was younger.

05:20  Slide showing various diseases treated by transplant:  This slide shows the use of transplant for different types of disease. In the blue is the allogeneic transplant, and in the green is the autologous transplant. 

You can see that there is not a whole lot of overlap between autologous and allogeneic in these various diseases. In myeloma, almost exclusively, it is autologous transplant [that is used]. This is by far the biggest treatment indication now. Similarly, with lymphoma, most are autologous, but a few are allogeneic. Then in some of the, what we call, marrow-based diseases like leukemia and myelodysplastic syndrome, we hardly ever do any autologous transplants. Then here is Hodgkin's [disease]. That defines the type of treatments we are talking about, and the type of pre-transplant treatments we are talking about. 

06:13  What is the goal of an autologous transplant?  Just to think about what the goal is.  When I see somebody I am thinking about [offering] an autologous transplant, you might think that we are trying to cure everybody. Well, if we could, that would be the goal, but certainly for myeloma transplants, that is not a realistic goal. We look at it more as a treatment to extend survival and to eliminate or reduce symptoms of disease. Whereas in the lymphoma transplant scene, we are more geared to try to cure the disease. That actually just distinguishes the two approaches in terms of the intensity of therapy, and the type of therapy that is given. 

The next few slides just show you some of the data in terms of long-term outcomes of some of these transplants for lymphoma, myeloma. 

07:04  Slide showing outcome data for patients who had an autologous transplant for B-cell lymphoma:  This is B cell lymphoma, the most common lymphoma. We can see a large number of lymphomas. Generally, you can see there is a big difference between the number of sensitive and resistant patients on the slide. The patients with sensitive disease do a lot better. There is approximately a 50% to 60% survival at about six years after the transplant. Less with the resistant. We do a lot fewer resistant lymphoma patients because we do not think it works that well in that setting. This is probably a better group resistant than the resistant group as a whole. You can see that we still are not curing everybody going through these transplants with that disease.

07:43  Slide showing outcome data for patients who had an autologous transplant for Hodgkin disease:  Hodgkin disease has a better outcome. You can see the lines look better, these are survival curves about 70% here of Hodgkin patients who have gone through transplants are still alive six years later. The resistant patients actually do better than the other patient group in the non-Hodgkin lymphoma setting. 

08:04  Slide showing outcome data for patients transplanted for multiple myeloma:  Now myeloma. This summarizes survival after transplants for myeloma. Transplants for myeloma are very, what we call homogeneous. We use pretty much the same therapy across the country, almost across the world. There is not a lot of different methodology employed by different treatment centers. It is almost always high-dose melphalan being given. 

You can see that survival after these transplants appears to be improving by year. If you look at the year, this is the earliest group, 2001 to 2004. Then the latest group, shown here, seems to be somewhat better in terms of outcomes after transplant. Some of that probably relates to the adoption of maintenance therapy fairly routinely after transplants for multiple myeloma. Also, there is the emergence of new drugs that treat the disease more effectively. Something to remember, there really is not a lot of difference in the method of transplant per se between these time frames.

09:16  Relapse after an autologous transplant:  Now, this is a slide that looks at, in patients who have not succeeded with their transplants, and the transplant has not dealt adequately with their disease, or alternatively, there have been side effects related to the transplant, you can see that this is data with a three year follow-up from transplants done in 2014 to 2015. Now, approximately 70% of the reason for failure here, is the actual disease itself. That is still a big deal for us, in that we have inadequate therapy; and trying to address that, is an ongoing challenge and the subject of clinical trials. 

Causes for folks not making it through for other reasons are scattered and we will touch on a little bit of that later. In some cases, these are not terribly well defined in the data banks. Relapse is the major risk of failing an autologous transplant in terms of it not leading to the outcome you want. The risk of relapse and the length of remission after transplant are related to the type of disease, the characteristics of the disease, and the remission status on entering the transplant. While none is perfectly predictive, there are predictive factors for each of the diseases we take into the transplant setting.

10:42  Therapy after an autologous transplant to reduce the risk of relapse:  To try and improve outcomes of transplant, there are a number of trials being done looking at drugs administered after the transplant—and you might say, "Gosh, I've just been through a transplant, what more could I take?"— However, this has been investigated beyond the trial summarized here. 

We have found in myeloma, that Revlimid improves survival after transplant; but it does require taking continuous low-dose therapy. 

Then Rituxan, which is an antibody-based therapy used a lot in lymphoma, when given after—it is used in the conventional therapy combined with frontline chemo—when given just by itself after the transplant, and continued for several years, it improves the outcomes of transplants from Mantle cell lymphoma, which is a subset of non-Hodgkin's lymphoma. 

Then a drug called Brentuximab, which has been first shown to, by itself, be a pretty effective therapy for relapsed Hodgkin lymphoma, has been put into the post-transplant setting for Hodgkin disease, and also the people with higher risk Hodgkin going through transplant have seen benefits from that as well. 

We do not have an effective post-transplant therapy for every group for which we do these transplants. I would say that one should not stretch out and get into therapies without solid data that they actually are likely to help you. Because if they do not, then they are likely to be counterproductive. 

12:29  Strategies to handle relapse:  When we encounter relapse after transplant, it is obviously a difficult problem to deal with in terms of re-strategizing. How to handle it depends very much on which disease we are dealing with, and what our treatment options are. 

Now, one has to define a set of goals at that point again. The main one is to extend survival for a lot of patients, alleviate symptoms, but it still may be possible for the so called curable diseases to come up with a curative strategy, albeit with new rounds of chemo and possibly allogeneic transplant. 

Just what the options might include: re-treatment with chemo; embarking on clinical trials with new drugs; immune therapies are becoming increasingly used—they work differently than chemo and so resistance to them is not necessary built in if your chemotherapy is not working. Some patients will undergo a second transplant, particularly myeloma patients who had a good run with the first one. We may employ a donor transplant, if it looks like that might have a decent shot at getting rid of the disease.

And then there is this new form of therapy, which some of you probably have heard of, called CAR T cell therapy, which involves genetically engineering your own immune cells, and directing them back against the underlying cancer. That is actually very promising in diffuse large B cell lymphoma and in myeloma at this time. It has not had many years of follow-up yet. It has not been subject to randomized trials; but certainly, in terms of responses, it is amongst, if not the most potent form of therapy that we have come across.

14:17  Side effects of an autologous transplant:  Now when I switch to the late side effects of autologous transplant— and this is a subject which has been a little bit difficult at times to tease out in the literature from allogeneic transplant side effects—there are many potential effects on the body after being subjected to the treatments we have given in this field.

I just think about a couple of my patients, like a lady in her early 70s, back on a farm three months after autologous transplant, and chasing the cows around. Another back in the cockpit of his commercial airline, six months later. You wonder, "Well, why doesn't everybody do that?" As we look at this, we will get to see some explanations as to why it is not always easy to recover from just these intensive exposures to chemotherapy. Starting with what we call endocrine problems, or related to your metabolism and bones. Bone loss is a common problem after transplants. 

15:29  Avascular necrosis (bone loss) after an autologous transplant:  There is an unusual entity called avascular necrosis that occurs in a small number of patients. This is where the joint, a part of the tissue dies, and is no longer stable, and the bone degrades around it. This is linked to the use of steroids, in particular in the autologous transplant recipients. 

Now, a lot of people treated for blood cancers get steroids. They get them with part of their regular therapy. Most people do not like steroids very much. Every now and then somebody says, "Oh, this is great for my energy," but its long-term effects on your body are not particularly good. It causes bone thinning, sometimes fractures, increased predisposition to osteoporosis, or thinning of the bones. There may be other factors that interact with this to increase the severity of bone loss.

Now, what can you do about this? Well, the best things you can do, are look at how you can prevent [it] and better caring to minimize the effects. You can not necessarily entirely deal with that problem and normalize your bones, but you can slow the progression of this, or stabilize it and sometimes improve bone density through using various drugs given in this setting. 

One is called bisphosphonates, that is actually frequently used in myeloma as part of the actual treatment plan. In other settings, these drugs are given to stabilize bone density in a non-malignant setting. There are some other newer drugs that the endocrinologist could potentially prescribe in difficult situations that they are encountering. 

Optimizing calcium and vitamin D intake is important. Measuring vitamin D levels, because many patients become vitamin D deficient going through this type of therapy. If you have hormone depletion, testosterone, estrogen, that could be discussed as a possible way of benefiting you. One thing you can do, yourself, is to try and stay active, keep the body moving. We know that walking and exercise do help with this type of problem. That can be an important thing you can attribute to preventing this getting worse, or maybe even helping strengthen. 

Then specialist help through an endocrinology consult can be very helpful for some people. We routinely send our donor transplant patients to endocrine follow-up after transplant. We do not necessarily do that for our autologous transplants, and part of this has to do with a lot of our autologous transplants leave their program very early. They are not under our nose as much as the donor transplants. I would certainly want you to bring that up with your own physicians, particularly if you are having problems with this particular issue.

18:29  Infection after autologous transplant:   Infections are a big deal after transplant. We see a lot more of these after allogeneic transplants than autologous transplants. In the autologous transplant setting, my impression is that patients with lymphoma tend to have more problems with this than patients with myeloma, probably because of the greater intensity of the type of therapies they have prior to the transplant and during the transplant, and the greater reduction in the number of immune cells.

We attempt to deal with this through preventative strategies. Typically, we try and keep you on a drug against this infection here. I am not going to ask you to say that for me. We generally call that just abbreviated it to Pneumocystis. We typically put patients on a drug called Bactrim® six months after transplant. The other major thing that we know would happen to a lot of people, was reactivation of shingles. That is the chicken pox virus, chicken pox virus in your nerves. That can be a painful problem; and so we typically have preventative therapy to a year after transplant with a drug called acyclovir. 

19:37   Vaccinations after autologous transplant:  In terms of vaccinations, there are standard vaccination guidelines. These have not been tested to the degree that I would think would be really strong data on this. At a consensus expert level opinion, it is our recommendation that these vaccinations be done starting, the latest, about a year out from the transplant.

There are some centers that do vaccinations a lot earlier. If you are in the flu season, it really does not matter where you are after transplant: I will typically prescribe the flu vaccine. This is just a summary of some of the information I just taught. The schedules for these are a bit annoying at times, sometimes insurance issues come into play making this difficult; and we have patients coming back to our program usually at one year after transplant specifically to look at this issue.

Sometimes we end up having to send them back to their primary care physician, or even to the health department to get the vaccines they need. 

There is a new vaccine for shingles, which is what we call recombinant. Basically, it is a DNA based vaccine, which is not live, and that will be coming into play a lot more. 

Then I talked a little bit to you about the flu virus.  the flu vaccines are not necessarily, terribly effective. In your first 6 to 12 months after transplant, you cannot really trust your immune system to be perfect. You probably heard, through the last flu season, that lots of people got sick who were not just out in the community. You have to respect the fact that these viruses could cause you trouble, and you need to look after yourself and be careful who you are around, particularly in the first 6 to 12 months. 

21:27  Fertility after an autologous transplant:  Fertility after transplant is a much bigger deal in the younger age group. When you look at the age group of patients we are transplanting, you will see that for a relatively small proportion of patients, that fertility issues are an issue. I did run into one of my patients out there, and he told me he is now about to have a second child after his autologous transplant. This is not from stored sperm, it’s from post-transplant activity. 

Do not assume that we are providing you with adequate contraception with these transplants. I would say, and certainly with the myeloma transplants, the regimens are not as intensive as the lymphoma transplant regimens. We do not use total body irradiation pretty much at all now with autologous transplants, and that is one agent that has been associated with heavy loss of fertility. 

Women are more susceptible to the effects of high-dose chemotherapy, in terms of not recovering fertility, than males are. The best thing if you really do want to be fertile post-transplant, well at least have kids post-transplant, or have some shot at it, is to look at it before the treatment, okay? Anybody looking in that space right now? You do not need to answer that. All right, you can imagine that sometimes these are very long and protracted discussions to figure out a strategy, because you are trying to deal with a cancer that is growing and preserving opportunities in the future. That can be a difficult timing thing for some of the patients who are newly diagnosed.

23:30  Sexual health after an autologous transplant:  Similarly, sexual function after transplant can be affected. A fair number of patients seem to recover okay, at least they report that. There is probably an under-reporting of problems in this area. 

The effects on the body are going to be dependent somewhat on age, and where you are in your normal evolution of hormonal changes. These effects are pretty common, loss of lubrication, thinning of the mucosal, or lining of the vagina. In males, low testosterone. So these are things that may be amenable to fixing, if you discuss them, and want to take that on. 

 you have to be proactive to deal with this, and be prepared to bring it up with your doctor. Your doctor may not bring it up with you all the time, because they may be focused on the first three or four items on the list of problems that they are dealing with. You have to be your own advocate in this area, as well as we have to do a better job of getting this in front of you. 

24:33  Pulmonary problems after an autologous transplant:  Now, lung problems after transplant. At least in my anecdotal experience, [lung problems] tend to be less of a problem in this day and age, than they might have been in years gone by. This is probably because we have learned which drugs are the most toxic to the lungs. Very severe lung toxicities are relatively uncommon, but in days gone by, combinations of chemo that used a drug called bleomycin, particularly—actually, this is used in Hodgkin disease and all our lymphoma regimens we use currently have this drug—but the dosing of this carmustine, or BCNU, is important in terms of the risks of lung toxicity. 

There are some patients who do get what we call a chemical pneumonia after transplant that can lead to sudden changes in breathing, and put you at risk of scarring. If that is treated quickly, and with steroids, it usually settles down pretty well. 

There certainly is some potential for subtle losses of lung function as a result of just being exposed to chemotherapy during these treatments. Folks who get radiation as part of their treatment—and this is more common with lymphomas, and sometimes the myeloma patients who have bone disease in the chest— they can scatter up to the lungs and create some issues there. 

Occasionally, and this more typical in the donor transplant setting, we may end up removing part of a lung to try and control a fungal infection. There may be some scatter to the lungs that just causes an area of scarring and thickening. These again, are variable in terms of number of people who get them. If you feel like your breathing is getting worse, you ought to report it, because it could be something related to the toxicity of the chemo. Also, it could be an infection going on. That is more typically the problem than the long-term effects of the drugs. 

What can be done at that point is to actually try and make a diagnosis of what is going on. A lot of centers have a dedicated pulmonary, what we call lung service. [These are] physicians who are involved with the transplant program, and who can evaluate you, and possibly help with things. Sometimes, it could be you have got asthma, and that is not being controlled properly after transplant, or it is acting differently than it had before. 

27:02  Do not smoke after transplant:  Now, this may seem quite intuitive, but it is probably not a good idea to resume smoking, if you are a smoker, after transplant. You are just adding additional toxins to the lungs that have been hit pretty hard. If you have a job that puts you in exposure of welding and solvents and the like, and chemicals, look carefully at that, and see if you can optimize your workplace. If necessary, it may come to not being in that environment. 

27:35  Heart health after an autologous transplant:  Heart health after transplant is an important topic. It is not one we intuitively think of a lot of times. A lot of patients have cardiologists and primary care physicians, but there is an increased risk of heart disease after transplant, primarily facilitated, or brought on due to changes in hormones and metabolism. We do see that there is a propensity to diabetes and hypertension, inactivity. A secondary transplant could increase fat levels, cholesterol, and so it is been found that it is in fact an issue we need to be on the lookout for.

Coronary artery disease, or ischemic heart disease where the arteries are narrowed, that can be accelerated by exposure to radiation to the chest. Being aware of this as a patient is important because you can potentially intervene, or preempt, some of these problems, or slow them down. 

Congestive heart failure is a term for when the heart muscle is not working properly, and that may be quite different from a narrowing of the arteries. That is a potential side effect of direct toxicity from some of the chemo drugs. Notorious is a group of drugs called anthracyclines; which may be given with chemotherapy before the transplant, and could interact adversely, cumulatively with toxic effects of the transplant chemo, such as cytoxan, and melphalan. 

What can you do? Well, you can try and optimize your general health.  For the patient who has been through a transplant, there is a greater impetus to have to do things for your own good health and healthcare maintenance than there is in the general population. You have to deal with the unfortunate truth that there is a bigger risk to you from these health issues. You can hopefully help yourself by looking closely at your general health: blood pressure, diabetes, cholesterol, and managing those with your primary care physician. 

Exercising regularly, whichever of these catches your fancy. There are people doing all of these. Some people certainly cannot do much, because they've got bone problems or pain issues; but just getting out and doing something is better than doing nothing. Continuing regular health maintenance and checking with your primary caregivers as needed. 

There is an increasing emphasis on providing cardiac oncology services. Our cardiologists interacting with the transplant programs provide services that can focus in on these issues. 

30:37  Changes in thinking after an autologous transplant:  Neurologic side effects to transplant  are often subtle. A lot of people have trouble with clarity of thinking and performing exactly normally as they are getting over their transplants. This can persist over a longer time. It often does get quite a bit better as you get many years out from the transplant, but some people do complain of ongoing issues, for sure. 

31:32  Peripheral neuropathy after an autologous transplant:  One of them is not really described very much in the literature, but I am quite aware of amongst my population of patients, is this issue called peripheral neuropathy, which is pain in the hands and feet, or numbness. It frequently develops before the transplant as a result of the therapies given to treat the disease up front.

This may be worsened as a result of the high-dose chemo, or some of the maintenance therapies given after the transplant. 

There are not great treatments for fixing neuropathy, but there are ways of alleviating some of the effects of it. This might require medication, or other non-medication intervention. This is a difficult area, there are not the specialists who deal with this, I find it a frustrating area, but it may be worth talking to a neurologist if you are having a lot of problems in this area, or a pain specialist.

31:57  Cataracts after an autologous transplant:  After autologous transplant, we do not see a lot of complaints about eye problems. Cataracts have been recorded, reported a lot in the donor transplant setting. Probably the biggest predisposition for early cataract formation, is a lot of steroid exposure as part of your regular therapies. If you are having trouble with your eyes, it may sound like the obvious thing to do, go see your eye specialist, and have a good check out, and see if there is anything going on.

32:27  Secondary cancers after an autologous transplant:  Now, the biggest concern when we do these autologous transplants, is that we might cause another form of cancer. The cause for this is multiple. First, there is the therapy given before we ever collected the stem cells that can damage the body. There could be infections related to weakened immunity, and inability to prevent cancer within the body. 

Then there are direct, toxic effects of the chemotherapy. In follow-up after transplants, there is a significant increase in the risk of other types of cancer developing, as compared to the general population. You can see the numbers there. You can also see the time frame in this graph here. This is years. There is a group called lymphoma peripheral disorders, that is not really occurring after autologous transplant. This is really a donor transplant phenomena. 

MDS leukemia is the thing we worry most about in the autologous transplant, because it can come on in the first few years and be very difficult to treat. This is a direct consequence of damage done to your primary stem cells through chemotherapy, or stress on that system. 

Then there is a slow but steady accumulation, what we call solid tumors over time. Again, this is thought to be a direct toxicity of the chemo on the body, DNA damage within various cells ultimately shows up. 

Most important, from our point of view, is this AML, acute myelogenous leukemia, or myelodysplasia. It occurs in about 4% to 5% of patients, typically within the first one to four years after transplant. sometimes a bit earlier, sometimes quite a bit later. The combination of exposure to chemotherapy and radiation is an important factor. The use of total body irradiation, as I said, that is not done much with autologous transplants these days. Then, if you have very low stem cell doses collected, that seems to be a factor too. That is probably an indicator that there is already some damage there if we cannot collect strong doses of the stem cells. We would be looking to monitor this by regular blood count checks after transplant. If we start to see blood counts that do not make sense, then we have to start looking a little further.

Then there are a variety of solid tumors. There is not one big particular tumor that is very common. I would say, my own personal observations here in Colorado, is we get a lot more skin cancers than the literature would suggest. I see a lot of that in my patients, and this is probably under-reported.

What can you do about this? Well, it is hard to stop this stuff, so you have to try and get in front of it. The way to get in front of it is to stay on track with health maintenance and regular surveillance, and make sure that your current physicians are aware of your past medical history and have at least some understanding of what you have been through, and what you might be at risk of.

35:48  Fatigue after an autologous transplant:  Now, a common problem after transplant is fatigue. When you look through the literature, this is surprisingly persistent. I did tell you that I had my 73-year-old out chasing after the cows not too long after the autologous transplant. She did have a little bit of ongoing fatigue. 

It is easy to understand why there is fatigue. I have put a laundry list there, and I am not going to run through all of these. We are basically degrading your functional status at the time of transplant. You are not doing much for a long time; you are having effects on your body; you are physically and psychologically stressed; there is a lot of fear. You are on medications that can reduce your functionality, that can be sedating. There are a lot of reasons why you are not going to necessarily feel right, and it may take a while for this to come around. 

How does one approach this issue? Well, one is trying to identify what might be contributing to it. Then, to try to determine if there is something that can be done to help. I was thinking about this, this morning, and thinking about those football players who injure their knees, and they tear their ligaments up, and they go through massive surgeries, and they take a year and a half to rehab and get back to football. They work really, really, really hard to get back; and maybe that we just are not pushing the rehab hard enough in post-transplant to get people back. 

If you lose activity levels and conditioning, how would they come back? If you have lost those, you are probably going to experience some fatigue directly related to having that happen. You are probably going to have to work on it to get back to a good level of function, or to optimize a level of function. If you are not sleeping well, that can obviously be a contributing factor. There are a lot of things that you might put aside and say, "Well, that is just my deal," but maybe they could be addressed by talking to professionals, or using techniques:  optimized nutrition, various behavioral techniques to help with handling things that may be contributing factors. 

Then, maybe you have lost some organ strength, lung strength, heart strength, and you may have to just accept that you are not as good as you were, okay? We did give you stuff that would tend to be not so good for your body. 

38:17  Sleep disturbance after transplant:  I was just talking about sleep disturbance. This is a common problem, at least certainly according to literature. Dealing with your own sleep, sleep is a specialized activity, believe it or not. It comes naturally and easy many times in one's life, and at other stages, it starts to become a little more problematic. There are a bunch of things that could contribute, and there are a number of ways that one might intervene. You will probably hear a lot about that if you attend the various workshops as to how you can potentially deal with problems that might be bothering you in this area. 

39:05  Quality of life after an autologous transplant:  Despite all of this, where are people going to end up? Anxiety, and vulnerability are high early after transplant. They probably ease up over time. Physical functioning returns to pre-transplant levels by about one year in three quarters of patients, and most return to work or school, and have good psychological health. 

What can you do? Well, this is a very difficult stress on your body. Your body and psyche have been subjected to very unnatural forces. However, you are probably stronger than you think. If you can optimize your general health, live healthy, use resources, you can optimize your quality of life. 

39:53  Returning to work after an autologous transplant:  What about work after transplant? Physical limitations and cognitive limitations may make it seem like it is difficult to get back at some point for many people, particularly early on. It is remarkable that a lot of patients can get back into the workforce fairly soon after autologous transplant, particularly if they have office or desk jobs, or they can be in particular environments initially. Immunity is probably okay beyond on 6 to 12 months to be back into most of the work types. Obviously, this sometimes can be a struggle to overcome things like fatigue, and some of the symptoms you will experience. It does at times require a lot of determination and work to overcome those. 

40:50  Stress on families after an autologous transplant: Stresses on families, yeah, this is just a lot about the patient themselves. The family has often gone through a lot of stress about the effects the transplant, the effects on the patient. Sometimes the caregivers are having a tougher time than patients when we face up in the office. 

One of the things we see at times, is what we call the white coat syndrome, which is anxiety and high blood pressure on the measures do. I usually tell my patients with high blood pressure in the clinic, to go home and measure their own blood pressure at home.  Adding a new blood pressure medicine is simply just adding problems, if you are not really experiencing blood pressure elevation all the time. If you are told get on a blood pressure management, blood pressure drug for your hypertension in the clinic, ask your doctor, "Can I do some home measurements to possibly avoid those drugs?" Some of them do have side effects like making you further weaker and tired. Just remember that, if you are in the office. 

41:55  Transplant anniversaries:  There was this issue about anniversaries, and what they really mean. Some people focus on ‘I am one year out, or I am now two years out’. This can be very positive in some instances, but for others, it can be a reminder of what they have been through. You probably have to personalize how you approach that. 

After autologous transplant, I do not do a whole lot of disease assessment, like bone marrows and scans, unless patients have indications to. That tends to de-emphasize the thinking about "yeah, we're now two years out." I know there are some people who really like to have repeated staging, or testing of their disease, even if there is not a strong indication to do it, just to feel better. That is something you should discuss with your doctor, about the value of that, and potential hazards of exposures to scans and stuff like that.

42:54  Self-care after an autologous transplant:  All right, so we have been through a lot of stuff that can happen, and ways that maybe you can help yourself the best. Some of it is common sense, some of it is supported by literature. Some of it is check your vitamin D, and your thyroid function, and make sure you are not short on hormones you need. Check your bone density, so you hopefully avoid any problems with fractures and the like.

Make your remission count. I know that some people come out of these transplants, and they are actually transformed in some ways. That is not the goal of the transplant, to transform your view of the world. You have, in many instances, knocked the cancer down, it is no longer present, or it is under really good control, or you are on some maintenance therapy, you can get on with your life. It is very easy to put up a slide that says, do not focus on the cancer, but somehow you have got to get on with your life, and do your thing. Sometimes that is easy, and sometimes that is very hard. Sometimes you are best off seeking help in dealing with that. Sometimes you do not,  but knowing what you are dealing with is a good start to try to cope with that. 

Take charge of your health, preventive care, early interventions will lead to the best outcomes. Continue to participate with your doctors and healthcare team on a schedule you think is appropriate to you. Remember you are a hero for surviving these therapies. They are not something that many people in the community really understand what it is like to go through.

44:34  Summary of presentation:  Just to summarize: the number of transplant survivors is increasing. The age group is getting older, so it is a different landscape for us as physicians, and for patients who are in their 70s going through some of these procedures, it is probably a very strange experience. There may be an indication for post-transplant therapy for what you have been treated for. You should discuss that periodically with your doctor. If you are not on therapy, there are that trials come out every year or two, that change the field.

Preventive healthcare maintenance is the key to post-transplant health. It cannot overcome everything, but it can give you the best shot of staying healthy. Frequently we are referring out to other specialists, lung, heart, endocrine, etc., to help you get the best healthcare we can provide you with. Having an active role in your own treatment and outcome is probably going to lead to the best quality of life, and long-term result for you.

45:40  Post-transplant care guidelines:  Now, there are a number of resources available to provide you with information and guidelines for post-transplant care. These are summarized in your packets, and on the slide. If you want additional information, you should go and read these; and there are a number of resources here at


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