Immunotherapy, Training, and Athletic Performance

I’ll try and keep this concise.
In June, I was diagnosed with a 3b melanoma.
In July, 14 lymph nodes were removed along with a large patch of skin.
In August, an infection and subsequent admission to hospital set back recovery significantly.
In September, I started a year long course of Pembrolizumab (immunotherapy).
In October I got back on the bike.
In November I began structured training.

As part of recovery I’ve chosen a couple of events in the new year to focus on … Paris Ancaster (75 km field, gravel, singletrack) in April, and the Epic 8 Hour in May. I’m not really chuffed about being competitive for either (hell, being on the bike next spring will be reward in itself all things considered), but I do want to enjoy the events. Should they go well and if the borders re-open I focus on some more competitive events later in the season.

Anyway, my program isn’t particularly heavy … 350 to 400 TSS/week spread over 3 to 4 rides indoors and out (trainer, mountain and fat bike). Two weeks on, 1 week off. It’s well within what I would have tolerated pre-surgery. I’m 58, had an CTL of probably around 50 before surgery and Training Peaks pegs it at 30 now.

Anyway, I’m toast … resting heart rate is way up, legs are jello, I’m sleeping an hour or two more a day than I would expect, and it takes probably double the recovery time that it would have 6 months ago. I’m experienced enough to know that I need to reduce the load and scale back.

In the normal course of things, I’d presume that I went in too hard, and my body and age were both conspiring to tell me to slow down. But given my performance and ability to recover in the past, I can’t help but think the Pembro (immunotherapy) treatment is contributing to the fatigue. Yesterday for instance I napped for an hour after 30 minutes shoveling snow. Urgh.

A search for insight hasn’t been particularly useful; Google turns up zero results linking immunotherapy, training and athletic performance and my oncologist is frustratingly obtuse … he says, yes Pembro can cause fatigue and yes keep exercising. Likewise, the published literature that IS available indicates that 35% of patients on Pembro experience SOME symptoms of fatigue and exercise can help mitigate those symptoms but they’re talking about modest exercise in largely deconditioned patients. Regrettably, I’m drawing a blank …

My questions therefore are this …
Are there folks amongst you who have trained through immunotherapy. And what have your experiences been?
Are there professionals here (an oncologist perhaps) who have trained athletes recovering from cancer or during treatment? Or might some here know of resources available to those in similar situations to mine?

And more specifically, I guess what I’d really like to know is …
Is it reasonable to train through immunotherapy.
What might the expected load reduction be? Expected outcomes?
And am I being a damn fool thinking I’ll be ready for the spring season?

Thanks all,
T

4 Likes

Hi, I had a friend that had a brain tumor, required surgery and Immunotherapy.

18 months on, he is doing well, started back his cycling small stuff to begin with and built up to cycling 60-70mile rides and some big hills. He has to be careful with COVID 19 around due to his immune system being compromised with the continued treatment. His main feedback was take it in small steps and listen to what your body tells you.

Found this link also.

Take care of yourself!!

Anyone else fighting cancer or coming back from cancer?

5 Likes

My second cancer diagnosis was a stage 3b melanoma as well. Surgery followed up with a year of immunotherapy (nivolumab) . I trained through the year of immunotherapy but give yourself a break. Everyone responds to immunotherapy different but I had a few issues. It really did a number on my thyroid so I had to get that under control and the fatigue was a real issue. Five days after the infusion of the immunotherapy I would feel like I had the flu for 5 days after. It’s hard to make real progress when you are training 3 weeks a month. There were other side effects too but it’s a hard course and remember your priority is to beat the cancer then training can be a focus.

I’m one year off my immunotherapy and I do feel better. My thyroid is still off but I take medicine to balance that out.

The bike training was more to keep me sane after the surgery and immunotherapy. Keep an eye on anything that seems out of the ordinary because there are a ton of side effects with different immunotherapy treatments.

Keep up the fight

3 Likes

Hi T,

I am sorry you’re going through this. I am a physician-scientist who has been in the immuno-oncology field for about a decade.

I am an expert in checkpoint blockade drugs such as Pembro. I primarily do research and this is not medical advice, however I’m familiar with the clinical literature and feel qualified to give an additional opinion here from this perspective.

To the best of my knowledge, there is no useful and rigorous literature to guide you with respect to immunotherapy specifically. As you’ve discovered, adverse effects of Pembro differ dramatically across individulous and our ability to meaningfully predict or track effects is limited. Listening to your body and managing the symptoms, as jasonmayo did, is what I would do.

No reason you can’t go for it when you feel good, provided you’re not fatiguing yourself to the point of getting sick. Happy to discuss further.

8 Likes

Thanks for this, folks.
Like you, @jasonmayo, the second week does seem to be the most difficult. I’ve adjusted my schedule accordingly and lowered expectations a whole lot … I too recognize the experience of feeling flu-like but hadn’t put it into those words until you mentioned it; sans cough/fever it’s exactly what it feels like … soreness, fatigue, brain fog etc …

Thank you for that link @C10oky ; it’s lead to further reading which contextualizes the challenge for me. Many on treatment are impacted far worse, fatigue being the least of the potential impacts. I wonder if at some point some clever grad student will start gathering stats and give more rigorous context to what it means to train through the ordeal.

Your offer to further discuss @HeiL1Ofu is very kind. I guess the one question that nags most is whether training has the potential to negatively impact the work of the Pembro … I don’t mind pushing myself with an end-goal in sight, but what I DON’T want to do is go thru a year of treatment/training and work against myself by over-stressing the immune system or trigger any other unintended consequences.

Kind regards,
T

1 Like

I apologize for the delay in responding, which was in part because I have nothing useful to say, unfortunately.

Despite the success of this class of drugs, we actually do not understand what global health factors are important for the best responses. Exercise? Diet? Sleep? These questions have not been answered with a degree of rigor that is clinically actionable. Understanding the effect of global health factors on “inflammation” generally and the effect of inflammation generally on a therapeutic anti-tumor response is definitely frontier medicine.

Personally, if it were me, I’d speculate that taking care of yourself as you would to avoid getting a cold is probably helpful. So avoiding the extremes of stress, sleep deprivation, or caloric deprivation, are probably more impactful than some strenuous exercise. I really doubt strenuous exercise, within reason, would have a negative impact.

Personally, I would train without limitation, but listen to my body to avoid deep fatigue. Personally, I would train through a bit of fatigue because I love cycling and there is no good evidence to the contrary.

1 Like

Here’s a one year update for those who might be about to embark on a similar journey (in my case stage III melanoma, a lymphadenectomy, followed by 12 months immunotherapy). I originally came to this forum looking for insights and I’m now able to share my own. With the caveat that the disease/treatment treats everybody differently, I would offer three learnings from my experience …

1/ My body was going through hell OFF the bike … I didn’t understand how much until speaking with a nutritionist mid-way through … her suggestion was that my basal metabolic rate increased by a factor 1.2 to 1.4 just healing from the surgery; it increased an equivalent factor while battling a post-surgery infection (serious enough to incur a 4 day hospital stay); then increased by a smaller but still significant measure whilst repairing 3 broken ribs (a February fat-bike slow-motion crash); and by a factor of 1.2 to 1.4 from the Pembrolizumab alone. During that period, training stress aside, I was losing at least 1 to 2 pounds a month no matter how much I ate. And no wonder, my body was running full tilt even when I was asleep. Roughly 9 months into treatment and 6 months after having returned to the bike, fatigue became enough of an issue that I stepped off the trainer (but not the bike completely) for a period of 3 months and didn’t get back on it until treatment was complete this September.

2/ Inflammation was an issue … particularly arthritic symptoms in my hands and hips but also the site of previous injuries. This wasn’t something the literature describes but anecdotally my oncologist confirms will/can happen. What this meant in my case is that a previous knee and wrist issue returned, hobbling on bike performance (and enjoyment). Thankfully this seems to be resolving itself post-treatment.

3/ I emerged from the experience significantly weaker … everything was/is heavier and more awkward. Which sucks. I now lift my bikes one wheel at a time into the bed of my truck via the tailgate instead of hefting them over the side. Jars are harder to open. And while my endurance levels are still okay my FTP is down. Way down. In retrospect I shouldn’t be surprised; couple a year of de-training onto regular age related muscle decline, and then add in a surgery and a taxing course of immunotherapy, and it’s bound to lead to large changes in body formation, fitness, and strength … I just didn’t appreciate how much.

Retrospectively, things I did right and things I would change.

  • Going into the surgery and treatment FITNESS was a huge asset. Throughout, my medical team would comment on how well I was tolerating the drug, recovering from surgery, and the high quality of my markers.
  • Staying purposefully active kept my energy levels up, kept me optimistic, and ultimately I emerged from the experience stronger than I would have otherwise.
  • Good nutrition makes a huge difference … in my case I swear I could clock fatigue/energy levels against the quality and quantity of calories I was taking in.
  • My training/exercise “energy budget” was dramatically reduced… my body was running hot and fast 24/7 and consequently it had only so much to give. It could have cared less what TrainingPeaks, TrainerRoad or my coach said I should be doing. Some weeks all I had in me was an hour of intensive work. And some weeks none. The TSS 10 hours on the road accumulates is nothing compared to what the drug can do to you.

In retrospect, there it’s unlikely that somebody who goes through this will come out stronger. Knowing that, I would have spent less time on the trainer, and more time in general fitness activities. Particularly I would have used my formal/planned “energy budget” on resistance/strength work as that’s where I experienced the greatest losses and the rest of it on fun stuff … gravel rambles, xc ski clomps through the woods, long mellow single track, hiking with my partner, that kind of stuff. Slower, less intense, sniff the flowers type of exercise.

So I hope this helps somebody. All said, I’m extremely gratified to have emerged where I am … while there is still some residual fatigue I’m currently managing a low-volume base plan with a 2/3 hour weekend ride thrown in. And, at the age of almost 60 I have a quiver of bikes in the basement, a VO2max of a 25 year old, and most importantly an NED (no evidence of disease) going on 18 months.

9 Likes

Definitely! I put up wrongly with the occasional sore/ upset stomach in my late 30’s. When I was 42 (2018) I had a one off massive bleed (piles I wrongly put it off as). From being fit, I suddenly felt like 80 overnight. I still stupidly carried on with cycle commuting circa 30miles a day and the LEJOG (although on two days my mates forced me correctly to get in the support car).
I finally saw the doc in late 2018 and they did a simple blood test initially. I think 135 parts iron in blood is normal, 35 parts is worrisome and 15 parts is catastrophic. I had 12 parts ! I was told in no uncertain terms that this was not normal and more tests were commissioned. In the meantime I questioned my 99% vegan diet and switched back to meat. It was only then that the classic symptoms of my illness started to appear, increasingly frequent sore stomachs. Just as it started to get unbearable the last test found it, bowel (colon) cancer. The cancer had been blocking my iron absorption.

As soon as it was removed though I started to feel better and it was hard to stay off the bike for the 6weeks plus that the nurses had recommended. Before that (at circa 5weeks) I was told I was getting chemotherapy and the oncologist advised I get back on my bike to see what level I’d get back to it post chemotherapy. I never did get back to that level and kept on building and set my then fastest 25miles (although I’ve now went nearly 5 mins faster on the same course).

My take from it (apart from I am a lucky B’stard) is that being fit kept me alive when I was stupidly procrastinating, helped me get through and recover from the opp and gave me the energy to attack the chemo head on and avoid the vicious circle (chemo fatigue > rest > more chemo fatigue > more rest > even more chemo fatigue, etc, etc) and I’ve come out stronger.

3 Likes

just got the idea to search this topic while working out this morning,
longer, harder or harder, longer. I’m wondering what someone else in my situation is doing? | Ride | Strava
as I was wondering how many people are in the same situation.
I’m 69 and a long time “roadie”.
I had surgery Nov 26, 2021 to remove a lymph node with melanoma from my groin.
I started immunotherapy on Dec 20 and going for my third treatment on Feb 14.
I trained up to the day before surgery and resumed training 2 months later, 9 days after my 2nd treatment. I had some side effects after the first treatment, mostly my body temperature being unregulated, I had huge swings in my temperature in the first week, and then got shingles for the first time ever but I had it diagnosed early, the doctor knew what it was within seconds of seeing me and prescribed an anti viral that would not interfere with the nivolumab. Since then I have been feeling very well and decided to go back to training. I was not in good condition before I started therapy as I had taken more than 5 months off the bike last summer. So I am starting from a low point. I treat the therapy the same as any other injury or illness with regards to my training. I know what the therapy does to my body from my oncologist and my own research, this is serious stuff. Slow and steady wins the race, listen to your body.

Paris to Ancaster is a memory for me, I raced it many times in the early years.
I appreciated the replies from the physician-scientist.
Gary

1 Like

Welcome to the forum, Gary….best wishes for your continued recovery!

Thanks, P,
I hope to be report updates as the treatments pass by

1 Like

I am wondering if there is a club on strava for people on chemo or immuno therapies?

It IS a journey.
Adding to my most recent post I’ll say that the “pembro” fatigue took approx 3 months before manifesting, and didn’t set in fully until the sixth month, and by the ninth I was completely beat. My oncologist suggested that this is normative to the research and that the impact on the body can take months in some cases to manifest. Had I known that at the time I would have gone easier in the early months, though I don’t know if ultimately if it would have made a difference.
I am now in my 5th month post treatment and maintaining a 450-500 weekly TSS with a 2 week on/1 week off polarized plan.
Apart from some skin-related stuff the Pembro affect rarely presents itself … and in fact last week I surprised myself with the thought that it had been days since I’d last had a nap. That said, proper nutrition and sleep (and staying away from alcohol) are still far more impactive than it was pre-surgery/treatment. In the end, should the melanoma stay away, the changes it wrought on my way-of-thinking and discipline around health and family will leave me stronger than I otherwise would have been.
Best with it,
T
ps … good thought about there being/finding/creating a immunotherapy/chemo group/club/team

2 Likes

I have treatments at 4 week intervals, so I plan to use that as my period length, finishing the day before each treatment.
My oncologist told me the same thing, so far my bloodwork tests showed normal in all areas.
I use the Strava and my highest single workout training load was 96 before my last treatment. Lots of improvement to look forward to, cheers,
G

As immunotherapy usage increases in terms of different agents and tumor types and people respond and live longer (hopefully) it seems like investigating the impact of training in an endurance athlete patient population would be a great project for an associate professor type trying to find a research niche.

During my ‘treatment’ I found a few articles. IIRC there was one in there from the American Association of Ocologists which was more specific to my ‘treatment’ for bowel/colon cancer. american association of oncology exercise during… - Google Scholar

1 Like

update,
well you never know what comes next, a few days after my last post I had another side effect, fever and skin rash. After tests at the cancer center, and eliminating the usual suspects, the cellulitis was attributed to the therapy. So I took 5 days off the bike and cautiously restarted my training and just finished a 1 week total training load of 456, with 1 more week to go before my next treatment and rest/unload week. Otherwise I’m feeling great,

3 Likes

The most important part…the bike will always be waiting for you.

Keep us updated, please.

1 Like

update, turned 70 last month, I have been feeling well with no reactions since my last post.
Approaching the 6 month/halfway point of my treatment plan. After mulling everything over, I thought a prudent thing to do was to not push myself too hard in either intensity or endurance. I think the treatment itself is a stress, even though I can’t feel it, as I feel quite normal and otherwise wouldn’t know it. So I’ve decided to limit my frequency to 1 or 2 rides per week and duration of each ride to 1.5 hours. I am not concerned about loosing fitness. I play golf(walking), pickleball, cut grass(walking), and work at a golf course as an irrigation tech(lots of digging). My recent outdoor rides have averaged 25kph, about 130 watts with an overweight 170 pound load :slight_smile: :grin:

5 Likes

Half way through summer and had my 9th treatment, 4 to go. Reduced my biking even more cause I’d just rather have more R & R time. Mowed my mom’s lawn today, wow! was it humid. Still feeling good and looking forward to training next winter. Cheers!

4 Likes