one more treatment to go, feeling great and keeping busy, so not missing the biking too much, but looking forward and planning the comeback for the new year
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Hang in there Gary.
I’m 14 months out from my last treatment. Watts have returned to a respectable level; as has resting HR, and VO2max. What hasn’t returned is the ability to recover. During treatment I called it “pembro-ing” (the drug I was on was Pembrolizumab); a period of utter and complete cognitive and physical fatigue. I’ve since been introduced to the term, post-exertional malaise (PEM). My experience is that I get walloped 24 to 48 hours AFTER a workout.
Also, if ramping more than 1 CTL week, I will dig a hole that takes up to 10 days to recover from (as measured by depressed HRV and increased RHR).
Pinning this on the drug is tough though. There is some evidence to suggest that once triggered, the effects of immunotherapy can persist for months or years, particularly those that mimic auto-immune symptoms. So maybe. Except during the treatment period and year following I turned 60 AND had covid twice, thus making it difficult to know whether the fatigue has to do with basic aging exacerbated by surgery; or even lingering covid impacts of which PEM is one of the reported symptoms; or by the treatment itself. When discussing with my oncologist, she seems to think that the fatigue could be related to post-covid recovery, but … the literature is so limited that personal experience and anecdotes are all we have. I’ll be very curious about your experiences post-treatment.
As for myself … I’m good for about 7 hours a week on the bike. I dig a hole if I do more. A three hour Z2 ride wipes me out for 3 days. My FTP has gone up by 50 watts which I’d say is a return to baseline, mobility is still restricted, and inflammation has never really gone away (sore joints, tinnitus, etc … ). I’ve played with the idea that instead of training for performance I train for “wellness”. It’s hard to give up the motivation that comes from setting and achieving performance-type objectives though. All that said, waking up tired and achy from time to time is a hell of alot better than not waking up at all!
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I’m nearly 3years out of ‘treatment’ now and for me at least the ability to recover came back quickly; I hope it comes back for you!
My drugs (and thankfully I can’t remember the name) wrecked the nerves in my nose, fingers and feet so they were blocks of unfeeling ice and in general the whole body was icy. The feet are still like blocks of ice but the feeling is back 99% as the nerves regenerate slowly and the body is warm again.
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Lol … " feet are still like blocks of ice" … yes 100 times over. And numb after 45 minutes or so. Fingers less so, but still.
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I’m on Nivolumab, I haven’t had covid, but know friends and family who have, and I am told that some of them aren’t quite the same. I can easily believe that having covid while on this therapy would be quite stressful. My oncologist advised me early on, to be ahead on the vaccine doses and I had my 5th, the newest one, 2 days after it came available.
I’ll be emphasizing Z2 when I start my training as one should anyway, cheers.
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update, it’s been awhile, all is well with me, my last treatment was in December, so now I am to have routine tests and consultations every 6 months. I am riding consistently for 2 months plus and feeling well.
Cheers,
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I’m glad to hear you are done with your treatment. It’s hard getting back to a new normal after a health crisis like this. I can say for me it gave me much more mental and physical toughness.
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Fantastic to hear that people are doing well after treatment, which gives me a lot of positive hope. Long story short, Stage 4 melanoma found in teste, surgery to remove then 4 rounds of Ipi/Nivo immunotherapy. At this point I was still on trainerroad a few times a week to tick over and got into a nice rhythm. Then 2 weeks after the 4th treatment the side effects kicked in (liver issues) been on steroids (prednisone) for the last 2 months which has been woeful. Put on 10% weight, numbness in hands and mouth, sporadic pain in my knees, and further treatment postponed until everything settles down. Today I received the great news that the liver numbers are finally heading in the right direction. Now I can start thinking about exercise again and find my happy place even if it is small, recovery type rides.
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Best wishes for a speedy and full recovery recovery @ijmurphy!!
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I’m sorry to hear about the complications with treatment; I always told myself that the side-effects of the drug were better than the alternative but it was still a tough pill to swallow and I think even more so for those of us who are goal (training) driven.
I believe I mentioned it further up in this thread but it may bear repeating; the ONE thing I wished I’d done during the treatment cycle was to focus less on structured training and more on the simple joys of getting on the bike and outdoors. If I were to replay it I’d have spent more time hiking, tromping through the woods on skis, trail riding for the hell of it, maybe more yoga and meditation, and certainly more walks from cafe to cafe with my wife. I’m convinced I would have emerged less fatigued and every bit as fit.
As it was, I tried to train through it and had to abandon it for a period of months. My first event last spring had me finish near the bottom of the field for my class which was fine but it was enough to let me know that there were greater forces at work … my body didn’t much care what I wanted and that I just might have to change what I wanted.
None-the-less, the urge to move towards an objective and measurable end is hard to discard. I’ve targeted a local season opener (P2A) and I’m training with that as an inflection point. I’m beginning to see signs of fatigue impact motivation, something that I’d never experienced pre-treatment. I’ll hold on through this cycle as the event in approx 8 weeks out, however at that point I’m going to have a serious sit-down with myself and re-assess the reasons why I train, the impacts of general well-being, and what comes next.
Anyway, I hope this provides a sliver of wisdom into what at least one individual who’s travelled this path has experienced. Good luck with your journey and please feel free to reach out should you wish.
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Many thanks for your response. The structured training will definitely take a back seat for a while but its great to lock in some indoor rides in the calendar and test the water again. The smaller goals are just being able to walk without getting out of breath, spending time with family, and trying not to look in the past too much of what I was capable of fitness wise, that seems like another lifetime. It’ll be a different journey but i’ll get there, and there’s plenty to be thankful for. Yours sounds a tough journey too, but inspiring that you’re targeting events once again - I miss the training and generally being out on the bike, but probably miss the racing and events more, they were super hard but also so much fun. Cheers
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I had my first follow up blood work and my oncologist informed me that my liver function numbers were outside the normal range. I have a CT scan scheduled for April 20. I don’t have any physical symptoms, maybe the numbers are “just” out of range or it is still early days. I checked my liver function numbers back to 2016 and they were “super normal”.
As for riding, I have had only 2 outdoor rides in the past month. Both felt great as I feel like I belong on the bike. I don’t have the time to ride more, too many family obligations and a hobby job. I’m not selling any bikes though, :). I have partook in other exercise options to keep as much fitness as I can.
Cheers
Yardwork or bike? I have a couple months to make it like this, so bike it is. | Ride | Strava
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Best of luck. Not selling the bikes based on my short battle with chemotherapy is definitely the right move. 
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I’m not one to draw attention to my achievements so posting this is sort of odd but I can’t help but think that for those stumbling on this thread and needing encouragement during their treatment cycles, I’d post some good results.
Three years ago at the age of 58 I was told there was a 40% chance I’d be six feet under today.
Two years ago I finished 80th in a 90 person field in my age class and despite the rigours of treatment I stayed on the bike, sometimes for three hours a week, sometimes for seven.
Fast forward to now. Two days ago I rode 101 kms with 2,000 meters vertical climbed and Strava tells me I set 44 segment PRs. Today I climbed 1900 meters over roughly 60kms and Strava tells me I set 62 segment PRs. Looking at the age comparables, I’m back in the top 25 percentile.
Had you told me this 6 months into the immunotherapy I would have thought you were crazy.
So be well, hang in there … and reach out privately if you’d like to connect.
(or maybe here … Trevor Paetkau | Strava Cyclist Profile )
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Just wanted to say thank you to all that took the time to share your experiences. I’m headed into my first round of pembrolizumab next week and trying to figure out what I’m in for. Seems as though I’ve been in a bit of denial. I just signed up for a 50k Mountain Bike Ride in July and was about to sign up for a 120k gravel ride in June.
Looks like I’ll need to be prepared to adjust my expectations. I’m particularly grateful to Ashes1962’s advice about focusing on simple joys outdoors. Thank you.
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Best wishes for a full and speedy recovery!
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If your oncologist/ nurse practioner are anything like mine they’ll encourage you still to do them and may schedule rounds to avoid them. Its good for your mental health and avoiding the vicious circle. I set my fastest to that date 25 mile TT (Ive smashed it now) after 3 or 4 rounds and they postponed my second last round to allow me to go on a cycling holiday and fully enjoy it. Nearly 5 years after my chemo I’d say they were right but I’d talk to yours they’ll know your individual circumstances.
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Thanks to all the posts on this forum. I am 9 months down the line with Pembro, and now struggling with running performance. I had kidney removed in January and have still 3 treatments to go before next scan. I am 54 years old and have run all my life, and have always run with Pbs in mind. I was happy to only be down a little after 6 treatments, but at 9 months I am now way off where I was. Its great news to hear that after all this is over things should improve drastically.
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Hi Marcus … it’s good to hear from you here.
Yeah, the Pembro fatigue accumulates with time and, if my experience is instructive, there is little choice but to recalibrate. For me it took 6 months or maybe a bit more after treatment commenced before I stepped off the trainer because my body just couldn’t handle it.
That said, if you beat the cancer part, it gets better. I’m 2 years 8 months post treatment but it hasn’t been until the last four months that PBs and occasional podium have returned. Fatigue still haunts me; the bloody thing has a long tail, but long days or intense sessions don’t knock me out like they were even last summer.
So yeah, things improve. But on their own time. Hang in there, there is a podium in your future!!
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Hey All,
For anyone else that stumbles on this thread in a time of need as I did, here’s my experience.
I was diagnosed with Melanoma on my head. Surgery to remove tumor on my head and lymph nodes in my neck on 12/22. Started Pembro (Immunotherapy) on 3/1 every 3 weeks. Significant progress after three months. Moved to every 6 weeks. Only side effect was that I now sleep 9 hours a night vs 7.5. Started training pretty hard. After 2 months of fairly typical training my times were off about 20% of previous years. Spoke to my Dr about it, hoping it was low iron. It was not. She (and I) attribute it to fatigue from the drug. I’m now riding less (4 days/week vs 6) and going a little easier. Most people who’d been through this that I spoke to, urged me to take it easy through treatments. So now I am. I have a big race that I do every year in mid July that is the focus of my training. This year my goal is to finish and have fun. Actually stop at every aid station, let the racers pass me, and be grateful that I should be around next year to give it another go.
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