Alimta and Keytruda causing major fatigue

[betsybpr]

Hi all. I am so happy to report that after only four treatments of Carboplatin, Alimta, and Keytruda, my scans and blood work up showed tremendous improvement of NSCLC Stage IV — almost NED but I still have a long while to go. My brilliant oncologist is putting me on maintenance of Keytruda and Alimta every three weeks as before. However, I’ve had very little side effects until now. She did say that the treatment is cumulative and now I’m experiencing extreme fatigue. She put me on very low dose of steroids for three days which did not help. This week she had me go back to the center for two hydration treatments which may have helped just a little. I’m worried that I won’t be able to continue with this combination that’s working for my cancer but may be intolerable since it’s cumulative- I feel wiped out and exhausted. Has anyone else experienced this with Alimta and Keytruda? Thank you, Betsybpr

[Denzie Moderator Volunteer]

Dropping the carboplatin will help ease the fatigue but it takes time for the cumulative to reverse. Don’t get me wrong though. There will always be fatigue. What helped me tremendously overcome the fatigue, as much as I could, was getting exercise. I started off walking a bit then adding distance. Also I did gentle seated exercise at my local senior center while waiting for the Livestrong at the YMCA to start a new session.

Contact your pulmonologist’s office and ask to be evaluated for pulmonary rehab. They will guide you through an exercise program that will strengthen the muscles that support breathing. Classes are very small so there is a low patient to trainer ratio.

Lung tissue does not regenerate. The cancer has been replaced by scar tissue and scar tissue does not facilitate the exchange of oxygen. The rest of your lungs have to work a bit harder to compensate for that loss.

If you still have fatigue issues there are medications that can help you overcome that. Some doctors will prescribe Ritalin when all else fails.

Please let us know how you do and what works best for you.

[betsybpr in reply to Denzie]

Thanks so much for your suggestions, Denzie. I’m meeting with the oncologist on Tuesday and anxious to hear what she has to say about the extreme fatigue. Will keep you posted

[ajk44]

Those are incredible results after 4 treatments - I am so happy to read that your journey is close to NED! My mom with a similar sounding diagnosis (no gene markers and low PDL1 levels) had 4 rounds of Carbo/Alimta/Avastin before having a hypertensive emergency which caused them to change her to Alimta/Keytruda for maintenance. However, after 4 rounds of that she became progressively weaker and unable to complete many simple daily task...I asked for her treatment this week to be postponed so we can get another scan and see what's working. Her oncologist mentioned some people get extremely wiped out by the Keytruda, or it doesn't agree with their system - though sounds like for you at least it's delivering results which is great.

They are giving her a break while we reevaluate and started her on prednisone for 6 weeks to help regain her strength.

I had asked her oncologist about 3 drugs that I had seen here that just were approved for NSCLC, Imjudo/Libtayo/Imfinzi, but she said those were similar immunotherapies that might just have the same side effects as the Keytruda is causing for her.

She made mention of Taxotere, Cyramza and Docetaxel as possible next options for her case. I hope they find some options that make you feel better soon! Thank you for sharing your story!

[betsybpr in reply to ajk44]

Many thanks for your response and for sharing about your mom’s similar diagnosis. I’m glad that the doctors are giving her a break from the treatment to help her regain strength. Sending her love and light during this difficult journey.

[Barbara36]

Extreme fatigue sure is familiar. My cocktail is Keytruda, Carboplatin and Abraxane. I too am worried I'm giving that monster cancer a break while my body recovers from the exhaustion side effect. Prayers and good thoughts that we both may regain our strength to fight yet another day.

[betsybpr in reply to Barbara36]

In my particular case it turns out that the Keytruda has caused me to have major hypothyroidism which in turn makes me fatigued. Also, it’s effected my vocal chords giving me a very hoarse voice. My vision isn’t as clear as it was either. My endocrinologist has put me on 100 mcg of Synthroid and will monitor my bloodwork often. She said that these effects are reversible with the medication. The thyroid levels will go up and down. She stressed the importance of hydration so I’m going for another hydration infusion tomorrow. The worst part for me is being unable to sleep - nothing helps! My body cannot process any sleeping aids till the thyroid adjusts. Ugh. Since the Keytruda is working so well to kill the cancer, I’m staying on it. Just praying that my thyroid levels off soon - she did say it’s a process. Wondering if anyone else has experienced thyroid issues while on Keytruda…

[Barbara36]

So sorry you're going through this. Hydration helps with my fatigue. I hope it helps for you too. Glad to hear you are hanging in there.

[betsybpr in reply to Barbara36]

Thanks so much for your kind words of support. I hope that the break from treatment gives your body a chance to recover. Sending you strength and warm thoughts 🤗