Non Operable Glioblastoma 4

my husband was dx'd in 1/2024, given a year with treatment of radiation for 6 weeks & oral chemo. His symptoms were so elusive that during the process, he rarely felt any different. He told the doc, it was hard to believe he had it, but mri's don't lie, and it is deep within the brain stem. At the middle of march when he was done , he still felt good, walking every day. But by April everything hit him like a ton of bricks, and he has stuggled now since then with ongoing fatiuge "no drive' , episodic nausea/headaches, but its the fatigue that has been disabling to hisQOL. He was however still ambulatory, and tried the optune but it didn't really work for him. ( the process of it,) we don't know if it really changed anything. He always looked better on paper, ie labs and mri were not too much impacted. But in Aug, there was some disease progression/edema so he started incenter chemo every 2 weeks. It was determined that there would be no more radiation after its first bout of tx. This past Dec, he started to decline in mobility and cogntively. ( he always had short term memory loss even before dx). And in Jan after discussion with md's it was suggested that the toxcity ( of chemo)was causing more harm than good and oddly again the 3 month labs/mris were all stable. So he went off all meds. no one could tell us how long it takes to clear out, but I would say it was finally by 1st week of april his skin color was the first to return to normal. NOW this doesnot mean any improvement in symptoms, he now is w/c to chair, still fatigued and appetite wax'es and wanes. HOWEVER< last week the MRI compared to Dec, once again shows no disease progression or swelling, and labs blood counts re all good . But as the md says it is deep within the brain stem on one hand it was a slow moving mass i thinkhe was symptomatic for a couple of years before final dx in 1/2024. So we take it one day at a time, he is comfortable in his own home, i am able to get aides through the VA ( he was declared disabled by agent orange by prostate cancer dx, 6 months before the brain cancer. ) Has it made me wonder whether it was worth it to do the initial tx, or to have taken the 3month prognosis at that time, with potentially a better quality of life. Maybe, but you know you make the best decision at the time, given all the facts. I m a former dialysis socialworker, i am pretty savv y re; quality of lif,e end of life, and we had had discussions prior to dx. about what we expected from each other and our daughter as power of health care attorneys. But is sad to see him in this slow death, he told e the other day, this is no life , I thinkyou have to feel confident with your medical teaam, maybe get a second opinion re surgery. Ours was very candid that its position was so unique it would have likely left far more disabled. we live in KY but we are from Mass we thought of getting a second opinion in Boston, but he really struggled with that, and opted to stay here, where he felt he would be more comfortable and once again there are no magic bullets. The one thing that bothers me and while we are grateful that prostate cancer made va disabled it was just by chance because i urged him to apply for agent orange. The va denies that brain cancer is a factor. But oddly he was in good health until age 77. At 70 he had a surprise dx of mass on his kidney, had a partial nephrectomy but it was benign BUT at 77 he gets hypothyroidsm, hypertension, prostate cancer and brain cancer. H e was in saigon on an airforce base in Da Nang for 2 years in 1965, ALL except the brain cancer are direct related to agent orange per the vA themselves, you just gott a wonder , apparently it lives dormant in your body for years, so its not unusual to dx'd with its impact30, 40, 50 years. later. I am grateful for their help, paying for the hospital bed, 11 hours of aide and w//c. He deserves that is for sure. after being drafted.