Tired: On immunotherapy and I want my strength back

Posted by Donna @stimey60, Oct 13 9:11am

I was diagnosed with stage 3 lung cancer almost three years ago, had a lobectomy and chemo. It came back in a year a small spot ,radiation and chemo. Scans just show scaring
Taking immunotherapy now have for almost 6 months now so far so good. But im so tired! Some days I can barely get out of bed. I want to get some strength back. I go to the gym and walk so far i can manage a half a mile.
First why am I so tired? It's been 7 months since the treatment. And more can I do to get some strength back?

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Hi Donna,
That's too bad that you are tired all the time. What can help tiredness is iron. Either eat foods with high iron content such as a good quality red meat or take iron tablets or do both. I'm 79 and eat lots of red meat and also take iron tablets. I'm very healthy and feel great! My doctor said he didn't need to see me for a year!
I wish you the best!
PML

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Thanks for that
I'll give it a try

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Profile picture for Donna @stimey60

Well did anyone know that mayo is doing a trial on ginseng? If you want to know more go to their website they are looking for patients.
But I did not qualify because of my diabetes.
So I was told it did not effect my immunotherapy but I should get approval from my endocrinologist, which is what Im doing now.
I sure hope he says ok
Thanks again

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Donna, @stimey60, Treatments take such a toll on our energy levels. Sorry that you are facing this, and to this level even months later. I would be frustrated too.
Did your oncologist have any other suggestions? Has anyone suggested a palliative care specialist?
https://connect.mayoclinic.org/blog/cancer-education-center/newsfeed-post/palliative-care/
Here's a link to the gingseng study details. https://www.mayo.edu/research/clinical-trials/cls-20566541

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No suggestions at all. All I got was im sorry your tired. Try exercising.
I know she did email the head of the ginseng trail, but I was rejected because of the diabetic.
To tell you the truth my followup care with Mayo has been sorely lacking. I really didn't get much till a year after my first treatment. And I think that was because i complained about the lack of care. I saw palliative care twice i think.
I finished my last chemo and radiation treatment in March of this year. I think it took me a year to feel normal again after the first treatment.
Some of the issue is they are around a two hour drive from house, so getting treatment is not always easy. I have found if I don't ask there is nothing forth coming.
Im going to try the ginseng but if it lowers my blood sugar to much. Ill just have to drag myself around.

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Profile picture for Donna @stimey60

Well did anyone know that mayo is doing a trial on ginseng? If you want to know more go to their website they are looking for patients.
But I did not qualify because of my diabetes.
So I was told it did not effect my immunotherapy but I should get approval from my endocrinologist, which is what Im doing now.
I sure hope he says ok
Thanks again

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@stimey60 my pleasure - I hope your endocrinologist says yes - and that it will help you feel more energized! ☺️

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Profile picture for Donna @stimey60

No suggestions at all. All I got was im sorry your tired. Try exercising.
I know she did email the head of the ginseng trail, but I was rejected because of the diabetic.
To tell you the truth my followup care with Mayo has been sorely lacking. I really didn't get much till a year after my first treatment. And I think that was because i complained about the lack of care. I saw palliative care twice i think.
I finished my last chemo and radiation treatment in March of this year. I think it took me a year to feel normal again after the first treatment.
Some of the issue is they are around a two hour drive from house, so getting treatment is not always easy. I have found if I don't ask there is nothing forth coming.
Im going to try the ginseng but if it lowers my blood sugar to much. Ill just have to drag myself around.

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@stimey60 , That's frustrating. I think we've all experienced some time when we just didn't get the answer/solution that we needed. I am not a clinician, but I'd be curious to know if your blood levels look ok, are there possibly certain vitamins lacking (B12 or others)? If you have a holistic/functional medicine doctor in your area it may be interesting to see what suggestions they may have, especially if you are open to some alternative treatments.

Mayo Clinic does have an Integrative Oncology area:
https://www.mayoclinic.org/departments-centers/integrative-oncology/overview/ovc-20542190
Here are a few links to some other discussions too:
From @lizfuller - https://connect.mayoclinic.org/discussion/loss-of-appetite-and-fatigue-after-10-weeks-on-keytruda/
https://connect.mayoclinic.org/discussion/coping-with-fatigue/

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Profile picture for Lisa, Volunteer Mentor @lls8000

@stimey60 , That's frustrating. I think we've all experienced some time when we just didn't get the answer/solution that we needed. I am not a clinician, but I'd be curious to know if your blood levels look ok, are there possibly certain vitamins lacking (B12 or others)? If you have a holistic/functional medicine doctor in your area it may be interesting to see what suggestions they may have, especially if you are open to some alternative treatments.

Mayo Clinic does have an Integrative Oncology area:
https://www.mayoclinic.org/departments-centers/integrative-oncology/overview/ovc-20542190
Here are a few links to some other discussions too:
From @lizfuller - https://connect.mayoclinic.org/discussion/loss-of-appetite-and-fatigue-after-10-weeks-on-keytruda/
https://connect.mayoclinic.org/discussion/coping-with-fatigue/

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@lls8000 thanks for that but I am not a fan of holistic medicine. I wont do chiropractic at all. I will try acupuncture, I've seen it work for my husband, but a holistic provider nope. Ill try the ginseng. But again if my blood sugar goes down that's it. Im older and I realize that it takes time. But after almost three years it is getting old. Ill send a email to the palliative providers I did see and see if I get any answers.
Thanks everyone for your help.
Youve given me alot of information.
I will beat this crap!
I've got to many people to pissoff yet!

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Hi Donna, that's exactly what I was looking for. I had my chemo and currently on Keytruda immunotherapy every 3 weeks. I was doing great but the last three weeks I am so fatigued which makes me depressed because I just can't do anything. I was wondering if anybody else felt this and how they're handling it. I wish you well Donna.

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Thank back at you! We will beat this horrible
I don't know if you have Lifetime gyms by you but they have a lot of older people classes. I asked them which one they recommend and I've tried a few of them. And they have helped somewhat. I'm currently trying the ginseng only taken 4 capsules so far don't know how long it takes if it does.
I'm trying to get a hold of my care team at Mayo and see what they recommend as well.
Hang in there it can only get better!

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Profile picture for Donna @stimey60

Thank back at you! We will beat this horrible
I don't know if you have Lifetime gyms by you but they have a lot of older people classes. I asked them which one they recommend and I've tried a few of them. And they have helped somewhat. I'm currently trying the ginseng only taken 4 capsules so far don't know how long it takes if it does.
I'm trying to get a hold of my care team at Mayo and see what they recommend as well.
Hang in there it can only get better!

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@stimey60 and @mary197052, how are you both doing? Any improvement in managing the fatigue? Tips?

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