JustMe Posted November 7, 2017 Share Posted November 7, 2017 After a rough couple weeks of me literally thinking my husband was progressing quickly, we finally realized he's 'just' dealing with the side effects of weaning off prednisone...mood swings, extreme fatigue, loss of appetite...it was scary, I thought he was dying because he barely spoke, didn't eat and just slept...glad to have an explanation. He starts the clinical trial in Boston next week hopefully. It will be Keytruda + AMG820. Spent all day down there yesterday for CT scan, brain MRI, labs, EKG...Thursday he has to have another needle biopsy...all this for the trial. He's been depressed. Another explanation for the above stated symptoms... Also having trouble with pain low in his abdomen. He has a large cancerous lymph node in his groin which causes pain, but this pain is in his whole lower abdomen. Possibly constipation from pain meds...but he isn't so sure. Waiting to hear about all the scans, hopefully there is nothing new going on in there. Nervous about the brain MRI results as well because he hasn't had one since May. BUT I feel more positive today than in a few weeks... Hope all of you are okay today too. Jennifer Link to comment Share on other sites More sharing options...
Steff Posted November 7, 2017 Share Posted November 7, 2017 Hi Jennifer, thanks for an update on your husband. I'm glad to hear that he qualified for a clinical trial. My mom is on Keytruda - receiving 6th dose Friday and so far it's working along with chemo. I'm not familiar with AMG820, but I can say that the only side effect directly related to my mom's Keytruda treatment is skin pigmentation changes - it's not been a big deal for her. I am hoping for the best for your husband as it sounds like he's already had a tough time. Prednisone "withdrawl" isn't fun, but at least it's temporary. Keeping my fingers crossed for the both of you that the most recent MRI shows nothing new. Take care, Steff Link to comment Share on other sites More sharing options...
JustMe Posted November 7, 2017 Author Share Posted November 7, 2017 Thanks Steff Encouraged to hear your mom has done okay with keytruda... You take care too please. Link to comment Share on other sites More sharing options...
JustMe Posted November 8, 2017 Author Share Posted November 8, 2017 Brain MRI is clear and scans showed just a bit of growth on existing tumors so at least we're not dealing with new involvement, labs looked good...has to have a needle biopsy still, but otherwise he's eligible officially for the trial...now saying he'll start the week of the 20th... Link to comment Share on other sites More sharing options...
Susan Cornett Posted November 8, 2017 Share Posted November 8, 2017 Fantastic news that he can start the trial. Fingers crossed for good results! Link to comment Share on other sites More sharing options...
Nan Posted November 9, 2017 Share Posted November 9, 2017 JustMe I want to wish you and your husband the very best of care and a bit of luck and perseverance as you go through this trial. When my husband was finally diagnosed over one year ago with Stage IV NSCLC, it had already spread from his left lung to lymph nodes in neck, chest and face. We were very lucky to get accepted into the Keynote-189 trial. He had 11 treatments at 3 week intervals and then had to have a break due to side effects. He is now on Prednisone awaiting CT scan of head and abdomen before seeing if he can be weaned off the steroids and resume treatment. It had been working miraculously with tumour shrinkage in range of 60-80%.I'll get back to you later with more info and answer questions. Link to comment Share on other sites More sharing options...
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