Fatigue

[lovey100]

I’m doing Keytruda and Altima once every 3 weeks maint. No I lay here and sleep and can’t stand too long, find out keytruda stops your thyroid from functioning so I’m on 100 MCG of levothyroxine to normalize but I’m wiped out. I’m cancer free I’m assuming since I’m checked CT Scan every 90 days, why would I need Altima and keytruda??? Is that normal, I need stronger thyroid meds so I’m not so tired I’m assuming and suggestions? All I do is sleep

[Denzie Moderator Volunteer]

These are good questions to ask your doctor. How many Alimta treatments have you had?

Even though you have no evidence of disease you are not considered cancer free for 5 years. You will have regular CTs every 3 months for 3 years then every 6 months for 2 years then annual CTs. I don’t know how often they will do the MRIs and for how long.

Neither Alimta nor Keytruda existed when I had my treatment so I can’t speak from personal experience. One woman I know discontinued Alimta after a number of treatments and went with Keytruda alone. I really don’t remember how many though. Talk to your doctor and see if there’s a standard they use.

As your body adjusts to being on the meds the fatigue will be easier to deal with. A regular light exercise program will help overcome it faster.

You’ve come so far since you first joined this board. I think you’re doing great. Your words read like a stronger you.

[lovey100 in reply to Denzie]

Thanks. I’m going to start up potassium pills since I’m low and maybe that’s why I’m lethargic plus I’m on thyroid meds as well, I’ll ask Dr tomorrow what’s the plan

[Denzie Moderator Volunteer in reply to lovey100]

What did your doctor say?

[lovey100 in reply to Denzie]

Thanks for asking, so... he took me off all treatment and made me give blood today which showed for the third time, every treatment that my red blood count 7.7 and anything under 8 I had to get a unit of blood, so every time I d a keytruda and Altima treatment I need to receive blood. I’m getting my unit now and my dr put me on 60mg if dexadrone or better known as steroids so I’m finally out a bed and going back to work Monday so I’m feeling great thanks to steroid as and now I’m not sure how Hong I’m off treatment but I’ll take it for now. Please share your thoughts thanks Denzie

[Denzie Moderator Volunteer in reply to lovey100]

My treatment was postponed 3 times but what I had was very different from yours. By the time treatment ended I had 4 transfusions.

I wonder if your doctor would consider giving you keflex alone.

[lovey100 in reply to Denzie]

I’m going to ask him but right now I feel great. Returning to work and continue on the steroids till he takes me off

[Jenniferroseolson in reply to lovey100]

I am on Opdivo right now (after something like 70 treatments of Alimta that ceased to be effective). It’s been whack-a-mole since I started in December with various “big” side effect issues. I did a course of prednisone that started with 60mg daily and decreased 10mg per week until I was on none. Then I spent the next 6 weeks on the couch with fatigue as you described: my thyroid was fine, but my pituitary gland and adrenal gland had essentially gone on vacation. The way I understood it, the steroids basically told the pituitary gland, “I’m handling this now.” I would advise you to be careful when you go off the steroids—make sure you are in good communication with your doctor and having bloodwork to watch out for the side-effects of having been on the steroids.

[lovey100 in reply to Jenniferroseolson]

Thank you

[lovey100 in reply to Jenniferroseolson]

Do you think I’ll be back in bed tired after steroids? I’m no treatment right now and weaning off steroids at 50 mg a week then 40 so on and I do labs 22nd then I’m hoping I’ll be normal after steroids?? Your thoughts please?