What are your best tips for dealing with fatigue on immunotherapy?

Posted by frickincancer @frickincancer, Mar 29 2:01pm

What are you best tips for dealing with fatigue on immunotherapy?

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I'm only dealing with fatigue from old-fashion chemo for my pancreatic cancer, but my 85-year old dad really struggled with it last year while on immunotherapy (Opdivo + Yervoy) for his mesothelioma.

First thing is to make sure your blood tests are checking for anemia. There are several types, and I'm not an expert on any of them, but a lot of people (docs included) basically only check for iron-deficiency anemia. Ask about other types and remedies for them as well.

Both my dad and I both had below-normal hemoglobin, but never "low enough" to justify a blood transfusion under typical criteria (< 8.0) which is rather archaic and arbitrary. Some doctors are now treating the symptom rather than the level and getting good results.

In my case, the DNP agreed that one person's 9.0 might be another person's 7.0, and that if you've been chronically low for a long, long time, you're going to feel pretty crappy. I was living on 2-3 big mugs of coffee every day before getting Ritalin prescription, which helped (cut my coffee intake in half) but really only solved the mental fatigue problem, not so much the physical.

One palliative specialist cited some studies from MD Anderson that found exercise was better than any drug for fatigue. But, in the classic Catch-22, if you're too wiped out to even think about exercise, it's not gonna happen. I've always been a fairly athletic guy, but I've lost a lot of muscle mass and endurance. Even a short jog or light weights leave me winded, because, apparently my muscles just are getting the oxygen they need due to the low hemoglobin.

After doing everything they asked me to (Ritalin, job change, reducing chemo dose), they finally relented and gave me a blood transfusion. I felt like Superman for about 2 weeks. The effect wore off and my hemoglobin didn't test much higher 2 weeks later, but the feeling good part was worth it.

That was January, and I'm about due for another one. I've added some non-prescription hyperbaric oxygen therapy to my regimen, and that seems to be helping a little, but might be confirmation bias. I haven't yet had enough hyperbaric treatments and hemoglobin tests to establish a valid correlation, but I'm working on it. My tumor marker increased and my tumor sizes increased while I was on the reduced chemo dose, so I'm not going to recommend that for anyone. It seems unfair they would ask you to choose between treating cancer (fully) and treating cancer-related, therapy-related fatigue instead of automatically just doing both.

TLDR: Get blood tests for anemia, try to exercise, inquire about a stimulant like Ritalin for the mental fatigues and a blood transfusion for both mental and physical aspects of it.

REPLY
@markymarkfl

I'm only dealing with fatigue from old-fashion chemo for my pancreatic cancer, but my 85-year old dad really struggled with it last year while on immunotherapy (Opdivo + Yervoy) for his mesothelioma.

First thing is to make sure your blood tests are checking for anemia. There are several types, and I'm not an expert on any of them, but a lot of people (docs included) basically only check for iron-deficiency anemia. Ask about other types and remedies for them as well.

Both my dad and I both had below-normal hemoglobin, but never "low enough" to justify a blood transfusion under typical criteria (< 8.0) which is rather archaic and arbitrary. Some doctors are now treating the symptom rather than the level and getting good results.

In my case, the DNP agreed that one person's 9.0 might be another person's 7.0, and that if you've been chronically low for a long, long time, you're going to feel pretty crappy. I was living on 2-3 big mugs of coffee every day before getting Ritalin prescription, which helped (cut my coffee intake in half) but really only solved the mental fatigue problem, not so much the physical.

One palliative specialist cited some studies from MD Anderson that found exercise was better than any drug for fatigue. But, in the classic Catch-22, if you're too wiped out to even think about exercise, it's not gonna happen. I've always been a fairly athletic guy, but I've lost a lot of muscle mass and endurance. Even a short jog or light weights leave me winded, because, apparently my muscles just are getting the oxygen they need due to the low hemoglobin.

After doing everything they asked me to (Ritalin, job change, reducing chemo dose), they finally relented and gave me a blood transfusion. I felt like Superman for about 2 weeks. The effect wore off and my hemoglobin didn't test much higher 2 weeks later, but the feeling good part was worth it.

That was January, and I'm about due for another one. I've added some non-prescription hyperbaric oxygen therapy to my regimen, and that seems to be helping a little, but might be confirmation bias. I haven't yet had enough hyperbaric treatments and hemoglobin tests to establish a valid correlation, but I'm working on it. My tumor marker increased and my tumor sizes increased while I was on the reduced chemo dose, so I'm not going to recommend that for anyone. It seems unfair they would ask you to choose between treating cancer (fully) and treating cancer-related, therapy-related fatigue instead of automatically just doing both.

TLDR: Get blood tests for anemia, try to exercise, inquire about a stimulant like Ritalin for the mental fatigues and a blood transfusion for both mental and physical aspects of it.

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It looks as though you have tried many different ways to improve fatigue. Are you eating enough protein? Have you tried seated cycling or brisk walking instead of running? Acupuncture helps too. Hope you find your way through this and are able to maintain your health through treatment.

REPLY
@gisellef

It looks as though you have tried many different ways to improve fatigue. Are you eating enough protein? Have you tried seated cycling or brisk walking instead of running? Acupuncture helps too. Hope you find your way through this and are able to maintain your health through treatment.

Jump to this post

I haven't tried cycling yet of any sort. I used to ride a road bike 15 miles every day, but that was a while back. I had just gotten back to running 3 miles every other night before my cancer recurrence, but not since chemo resumed. A 2-mile brisk walk is pretty easy for me, so there's a fine line between when exercise is too easy and too hard. I need to move that fine line upward a little bit, knowing the gains will come slowly. I have to make some other lifestyle adjustments first in order to start squeezing that all in.

Interesting you mentioned acupuncture in the context of fatigue. I've heard of it being helpful in various cancer scenarios, but don't know enough about it to proceed yet.

Is there a specific "modality" of acupuncture that is appropriate to treat cancer-related fatigue? A different modality to treat chemotherapy-induced peripheral neuropathy? (I've been on biweekly Abraxane for 14 months, got my share of CIPN). How do you find a credible acupuncture provider for various conditions like that? Do they have specific certifications they are required to display? (Similar at least to chiropractors, physical and massage therapists, etc.) I'm afraid of walking into the office of some charlatan who tells me what I want to hear in order to take my money.

Thank you!

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