Anyone dealing with brain cancer

@butterbutt, that must be scary to have symptoms that seem to say that the brain tumor may be coming back. What kind of brain cancer did you have? Have you talked to your team about the appearance of these symptoms and your concern that it is coming back?

@butterbutt I have had brain cancer for a number of years. If you ever have a change in symptoms, please reach out to your doctor right away. They can help you the best. What kind of tumor did you have?

My husband was diagnosed with GBM multiforme in January. He's finished the 30 days of radiation and low-dose Temodar. Waiting for the high-dose Temodar to start in just over a week, coupled with the Optune device. So far, so good!

He practically lives outdoors and sweats easily, though he is in great shape and has zero body fat. Anyone have experience with wearing the Optune "device" under similar conditions? (My concern is a sweating head causing shocks from the device)

My husband was diagnosed with GBM in April of 2022. None of his two tumors were removed. We were told they would just grow back and that it was pointless to remove them. He was not offered the Optune device. We were never even told about that. I think it is a more recent thing. I have heard it does work somewhat. My husband passed away three months after he was diagnosed. It sounds like your husband is doing pretty well and I keep reading about people living longer with GBM. I wish you both the best.

hopefully others can give you suggestions re; sweating, my husband tried in the early heat of kentucky june/july and gave up, it was far too difficult with the'burning sensation. There is aoptune device support group and there is a hat with a fan that others have used. Unfortunately my husband became so fatigued with his first rounds of treatment that combined with the confinement of 18 hours just didn't work for him, however, others seem to have more positive results. it is definitely a life style change, so keep communication with the optune team and support group. I dkn how active your md is , ours just had referred us to the optune team and felt they were best aware of how to answer questions. be aware however that they are not medical personnel on the 24hour help line but technicians. The trainer is not a nurse, but a patient care tech ours was very helpful with dos , don'ts sharing other pt experiences. good luck My husband is however now 4 months over the expected prognosis of a year to live, but has for the last 6 months been confined to w/c to chair, due to poor mobility and balance. unfortuntely for him it was clear from the beginning that a biopsy would have disabled him more and thus he was considered inoperable, hopefully yours has a better description of the tumor that has better chance of targeted treatment. ours didnot.

My husband was diagnosed with GBM in April 2024. He also has done the surgery, radiation and Temodar. He has worn the Optune devise for around 9 months. Like your husband, he was in excellent shape (daily long distance runner). He is unable to run now, but can still go for walks without using his walker. The Optune beeps 5 times when out in the sun, has to be reset in the shade and is annoying. But he has never been shocked from the device. We found that a cooling hat helps (like golfers often wear).
So far MRI's have been good. The only major problem we have had with Optune is that sore spots have started to develop under the arrays on the top of his head. Several weeks ago, some of the spots bled and were pretty bad. Optune staff can not give medical advise. We have kept the sores clean, stopped wearing the device for 4 days to allow healing. I've been able to reposition the arrays and cut off some of the adhesive bandage to avoid the spots. Our radiologist who prescribed the Optune said it was OK to place the arrays a little different than the prescribed photos. All is well now.
Wishing you the best. Hang in there.