Non Operable Glioblastoma 4: Tips for chemotherapy and radiotherapy?

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.

The type of tumor and proper staging is key. Mentholated tumors are very sensitive to TMZ and fractionated radiation. The optune device can suppress growth in the white matter. Best to see a neuro-oncologist for treatment options. So far there are no immunotherapy options I have found. Do not ignore clinical trials.

sendiing good thoughts to both you and your husband. I think I just read that May is Veterans' recognition month or something to that effect. yes, he certainly deserves the best care possible. all my best to you both. thanks for sharing his story/your story

thankyou that is very kind he has always been very reticent about his service, feeling that he did not experience the kind of trauma than others did, altho he was in saigon, but he was never a gun aficionado thus he chose the airforce, but like other men in his family he did his duty to his country, in a quiet but dignified way. I am grateful tho for what they have provided for him to get the care that he needs.

With stereotactic tools staging can be accurate. Fractionated radiation and right chemo can be effective. Be sure to work with a neuro-oncologist. Many general oncology practitioners will be willing to treat, but neurologist tend to be more practical and less dogmatic.

My wife was just diagnosed with an inoperable high grade tumor that is most likely a glioblastoma. She is scheduled to start Monday morning on TMZ (Temozolomide) and Radiation. Some of the genetic markers are not yet available but she is experiencing rapid cognitive decline and having difficulty with speech and mobility. We made the decision to start traditional therapy now rather than wait for another week or two for investigational therapy she may or may not qualify for. We will probably still keep an appointment with a neuro-oncologist at a University Cancer Center 2 hours drive away. The University is out of network for our insurance so don’t know how that would work financially even if she did qualify for a study. Fortunately our Oncologists collaborate with the docs at the University so I feel we are getting top notch care.

I am sorry to read about your wife’s diagnosis. My husband had two GBM tumors. He was diagnosed in April of 2022. They did not remove either tumor because they said they would just grow back and they wouldn’t be able to get all of the tumors anyway. We did the TMZ and radiation. He did not have the “good” genetic markers so the TMZ didn’t help. The radiation made him much worse very quickly and we only were able to do about 9 of the 30 treatments. I don’t mean to be a downer but I just wanted to let you know what might happen. The doctors never told us much about what to expect and I was never able to find others going through the same thing to ask them about what to expect. It was all new to both of us and we had virtually no support. My best advice is to never argue anymore and just enjoy what time you have left with her. That could be a few months or a few years. Just enjoy it as much as possible. Some GBM patients are doing better with newer treatments these days that we didn’t have when he was diagnosed. My husband only lasted three months. While it was not fun watching his decline, it was my honor to take care of him in his time of need. I was with him for better or worse and I weathered the “worse” at the end and did my best to comfort him. I wish you both the best.

My wife had glioblastoma on the left side of her brain. TMZ and radiation contained the cancer in the original locations.
She had radiation treatment every day for 2 weeks and three cycles of TMZ treatment, then three maintenance treatments of TMZ.
After about 11 months, the cancer appeared on the right side of her brain, and neither the TMZ nor radiation treatments had any impact on the cancer's growth.
She fought a brave fight against the cancer for 17 months, but it is truly not treatable.

Just diagnosed. Scared tto death. Who is your dr?

So sorry to read about your wife. Was her quality of life somewhat decent for most of the 17 months? My husband had almost zero quality life soon after he was diagnosed. The last six weeks of his three months he was bed ridden. But in a brother note I met a met a few weeks ago who was diagnosed at age 45 and they caught it earlier. He had surgery and changed his diet and did radiation and TMZ and he never missed a day of work. He is 60 now and still doing great. It is amazing. I know of another who is doing great five heads after he was diagnosed. So some actually do pretty well but it is very rare. Maybe newer treatments will do better. I wish the best to anyone who gets this horrible diagnosis.