freisadm Posted February 23, 2019 Author Share Posted February 23, 2019 Hopefully things are progressing this last month. I ended up in hospital with metastasis to brain. They did resection of tumor and start 3 treatments of stereo radiotherapy Monday. Should be done on Friday. Took a bit to recover from surgery. (Nasty staples). Lost some function but doing better. Dumped the walker and trying to build back some muscle mass. They have actually only missed one treatment of Keytruda. Not sure if they will try on Tuesday or not. Still have to taper off steroids and anti seizure meds. Back when this started, (7 months ago) my original treatment was concurrent chemoradiation. It was 2 days cisplatin and 4 days etoposide. The radiation was 6 weeks straight. Knocked me for a loop! After 2 weeks it was back to the cisplatin/etoposide. I guess my questions now seem to be why are they doing just Keytruda when you hear more about combining chemo with it. Hoping docs are on track and keep moving forward. They are now saying 2 years of Keytruda instead of one. Just confusing stuff! Link to comment Share on other sites More sharing options...
Tom Galli Posted February 23, 2019 Share Posted February 23, 2019 freisadm, Understand losing muscle mass. I also had a long hospitalization after a complicated surgery that became more complicated causing a four month hospital stay. First day out of bed, I could hardly walk from my room to the nurse station. Keep walking and ensure you eat. Now is not the time to start a diet and load up on carbohydrates and proteins. I can't answer your why Keytruda without conventional chemo. Perhaps halting conventional chemo is related to your hospital recovery. Glad you are out of the hospital. Recover and.... Stay the course. Tom Link to comment Share on other sites More sharing options...
Rower Michelle Posted February 24, 2019 Share Posted February 24, 2019 Given your high PDL-1 results I believe the standard of care is for solo Keytruda. It’s a personalized targeted approach. I have a good feeling this is going to be a successful treatment plan. Hang in there! Link to comment Share on other sites More sharing options...
freisadm Posted March 25, 2019 Author Share Posted March 25, 2019 Just got home from an 11 day stay in the hospital. Looks like they finally decided I had radiation pneumonitis and pneumonia. I had already had 2 treatments of Keytruda and they weren’t sure that side effects were part of my issues. I also had 3 treatments of the stereotactic radiosurgery. Waiting on mri next week to see how things went. The spread to the brain and subsequent surgery seemed to go well. Sent home with oxygen but only need it when ambulatory and it seems to be improving daily. Ct scan coming up along with pulmonary function testing. Hoping to go back to immunotherapy in a month or so. Just need time to recuperate Link to comment Share on other sites More sharing options...
LexieCat Posted March 26, 2019 Share Posted March 26, 2019 Hang in there--glad you've been sprung, and hope the recovery continues. Link to comment Share on other sites More sharing options...
Steff Posted March 26, 2019 Share Posted March 26, 2019 freisadm, Glad to hear you are home - it's easier to recuperate there! My mom had several treatment breaks while on Keytruda, most were a couple of weeks due to what appeared to be pneumonitis. She had pneumonia a few times as well. We never really knew if it was Keytruda causing the inflammation or something else. Unfortunately for some, I think the roller coaster of new health conditions/side effects are a part of immunotherapy treatment. My mom was adamant that she was going to stay on treatment for as long as possible. Taking the treatment breaks and periodic prednisone helped her body re-boot to ready itself for the next bout. I am hoping your recuperation time at home allows your body to get ready for it's next bout. Take Care, Steff Link to comment Share on other sites More sharing options...
freisadm Posted June 25, 2019 Author Share Posted June 25, 2019 Still hanging in there. Ended up in the hospital with a few seizures. I don’t remember anything for a few days. Back on anti seizure meds. They finally lowered my dose since it gave me terrible pressure headaches. Much better now. They are doing a wedge resection on my right lung Friday. Not sure if it is the same type of cancer that is in my left lung or not (adenocarcinoma). Either way at least it’s operable. It looks like the mass in my left lung and left adrenal gland are inactive right now. The brain metastasis looks good on my last mri. If we take care of the right lung we should be good to go. Hoping that’s the case since my doctor isn’t sure he wants to try Keytruda again. Still not sure if that caused the pcp pneumonia or if it was radiation pneumonitis. Hoping for the best Link to comment Share on other sites More sharing options...
Isabelle49 Posted June 25, 2019 Share Posted June 25, 2019 Bless you friesadm. I willl keep you in my prayers. Link to comment Share on other sites More sharing options...
Curt Posted June 26, 2019 Share Posted June 26, 2019 Hoping for the best for you too. Keep hanging in there. Link to comment Share on other sites More sharing options...
Tom Galli Posted June 26, 2019 Share Posted June 26, 2019 Freisadm, Glad to know the seizures resolved! I will pray for good results from surgery on Friday. Let us know when you feel up to posting. Stay the course. Tom Link to comment Share on other sites More sharing options...
Roz Posted June 26, 2019 Share Posted June 26, 2019 Hope each day results in continued improvement for you! Hang in there!! Best, Ro Link to comment Share on other sites More sharing options...
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