Four weeks post completion of chemo and still intensely exausted and short of breath

[u/flyonawall]

I finished 6 rounds of chemo but not NED, just "stable" for now. I am four weeks post last round of chemo and one week post Keytruda. I will be on Keytruda for "maintenance" for the foreseeable future.

The last two rounds of chemo were rough and I was pretty much bed bound for about a week and then struggling for the two weeks before the next round. So I have been like this for the past 9 weeks or so. Now I am 4 weeks post chemo and my doctor says I should be feeling better by now but I am absolutely not. They did a bunch of blood work, scans, x-rays, and urine tests, all negative. No blood clots. So nothing to pin point as the reason for my weakness and exhaustion. But I can't do anything around the house or garden with getting short of breath and weak within minutes. Supposedly I am not anemic, although my hemoglobin and RBC are low, not low enough to be anemic apparently. It is really frustrating feeling like this. Am I just going to always be like this and will I just need to "push through" until I get better? Right now if I "push" too much, my eyes black over and I am scared I am going to faint. I don't really feel dizzy per se, just faint. I am beginning to feel like the doctors don't really take me seriously.

[u/theycallme_shorty]

Had to come back to say one month post chemo is not enough time to 'feel better'. Not even close. Give it at least 2 months maybe 3. Everyone is different. One month after I could barely walk around a store for a few minutes. I'm now 4 months out and finally feeling more energetic. You deserve a little more time, and allow yourself some grace. ❤️

[u/theycallme_shorty]

I felt the same way right after my last chemo. Exhausted, short of breath with any exertion. My hemoglobin finally dropped just far enough to qualify for a transfusion. It took a week to get in for one but wow what a difference a couple pints of rbc made. Hoping for a similar outcome for you.

[u/flyonawall → u/theycallme_shorty]

Thanks. I think this is the real reason for my exhaustion but they insist it is not. I can understand not wanting to give a transfusion but I wish they would at least recognize that it is a problem.

[u/Ok_Aside_2361]

That’s normal. It will take you up to 2 years to feel like yourself again.

[u/flyonawall → u/Ok_Aside_2361]

I wish my doctors would have said that. They tell me they expect me to be feeling better by now and my last chemo was Aug 1, so not even a month yet. They make me feel like a whiner. I tried mowing my lawn to see if I really do just need to push myself more and almost passed out. I laid down in the grass to recover before I did and gave up.

[u/Ok_Aside_2361 → u/flyonawall]

I felt the same way. Not anymore. I am important, and so are you.

[u/Radical-One → u/Ok_Aside_2361]

First huge congrats on the STABLE!! It rapidly became my favorite word. Well except the running joke with my onc that the radiologist has obviously never met me 😎

What she said! I'm 2.5yrs out. Have permanent neuropathy. I still have fatigued days maybe from trying to overcome the neuropathy.

You went through many rounds of poisoning! It will take time to recover. Give yourself the patience and grace you deserve! I know easier said than done...

☮️

[u/hobbit_whxre]

Have you had an ECG? I ask because a lot of the drugs were on for premeds and the anti nausea meds can cause drug induced QT prolongation and that makes you feel not great.

[u/flyonawall → u/hobbit_whxre]

Yes, I had an ECG. Apparently my heart is fine, which is good, but I just still feel so exhausted and weak.

[u/hobbit_whxre → u/flyonawall]

I'm so sorry love maybe you really just need some more rest, it sounds like you've been through it

[u/mcmurrml]

When they say stable what does that mean? So you still have cancer somewhere? Did they tell you exactly where it is? If there still is cancer how are you done with chemo?

[u/flyonawall → u/mcmurrml]

Stable just means that the tumors in my abdomen are not growing. They reduced in size but did not completely go away. There is no cure for me at this point, just hope that it does not grow or at least gives me a few years more. That is why I remain on immunotherapy. It is supposed to help prevent it from starting to grow again. I am done with chemo because I had 6 rounds and my body can't take anymore. At least not for now, I suppose it is possible to get more if it starts growing again. My oncologist offered me one more round but I declined it. I just can't do anymore and there has been no progress in reducing the tumors with chemo.

[u/Glittering_Hurry236]

Did you have the hysterectomy? If so that takes a long time to recover from for most of us.

Especially when they remove the ovaries.

I haven't done chemo so I can't speak for that. But at 14 months post op being plunged into surgical menopause I can get dizzy once in a while.

I'd think with surgery menopause and chemo and immunotherapy- it will take a minute to get back to it.

Go easy on yourself. You have been thru a war!

[u/flyonawall → u/Glittering_Hurry236]

I had menopause years ago. I had surgery about 2 years ago, last year I had radiation and this year chemo + immunotherapy. It just keeps coming back, but hopefully not this time.

[u/Glittering_Hurry236 → u/flyonawall]

Hopefully with the chemo = gone for good!

Your body has been thru a lot -- give it a couple months, you'll be back!

[u/Antique-Anteater-988]

Have you had a complete thyroid panel run on you?  Labs to evaluate your T3, T4, TSH levels?  Even though you are post-menopause, the ovaries still have a correlating relationship with the thyroid gland.  The thyroid gland affects things like endurance, fatigue, heart rate, blood pressure…and soooo much more. When we lose our ovaries or they are damaged due to radiation/chemo, it could have an impact on what your thyroid is doing or not doing. 

[u/flyonawall → u/Antique-Anteater-988]

TSH is normal. Don't know about the others, I don't see them in any of my test results.

[u/CABB2020 → u/flyonawall]

Unfortunately, when tsh is normal, doctors won't order further thyroid tests. What is your "normal" number? Did you have your ferritin checked? even if regular iron labs look good, ferritin will be extremely low (or in some cases extremely high because of inflammation), but low ferritin can make you feel pretty awful as well.

[u/Antique-Anteater-988 → u/flyonawall]

It would be worth an ask to get your T3/4 levels checked.  After my hysterectomy, mine went wonky, causing heart palpitations and high blood pressure.   

[u/MisawaAlum]

Hey There, please give yourself some grace, it takes time to recover and gain strength.

I am almost 4 months past my last chemo sessions and I still get tired and out of breath easily, but I try and just do a little, one day at a time. I complained to my Drs. also but all of my labs were good, RBC just a little low. Oddly enough the one thing that helped me gain a bit more stamina is physical therapy twice a week. I had started PT prior to my cancer diagnosis for my crappy knees. My PT guy suggested we keep it up on the weeks I had recovered from my chemo sessions, and I kept going even after chemo finished and it helped a lot. My primary care Dr. also mentioned she could refer me for recovery PT but I decided to do the Live Strong YMCA program that starts in September. So, all that to say, things will get better, keep advocating for yourself, talk to your Primary Care Doc or PA if you have one, they are often better listeners and open to brainstorming options to help and support you.

And as so many people have commented, it takes time to start feeling better, hang in there.

[u/Human_Reward1796]

Give yourself time! My oncologist said, I should expect at least 6-8 weeks until feeling normal again but can take longer. I did recover pretty fast and am back to my regular sports now 3 month after chemo, so I got lucky but I guess I‘m also few years younger than you and I was very fit before surgery and chemo. I had mild anemia too but that resolved within a couple of weeks. What helped me tremendously was oncological physiotherapy. I started right with starting chemo and could do it 2x/week all through chemo. Maybe there is something similar where you are that you can start now and gradually built up your strength and endurance while supervised by a physiotherapist. Don‘t push trough, you can risk chronic fatigue by over exerting yourself. You need to built up your strength and endurance slowly and gradually.