How Have Your Glioblastoma Experiences With Temozolomide Been?

It is about quality of life. I have yet to get a full nights sleep with optune. Between battery changes and alarms, it has us up 4-5 times a night.

My husband, David, has been on the Optune device for six days. So far so good. I am the primary care giver and have changed the arays twice (every 3 days ). It was not hard to do... a little nerve racking the first time. We found the training and support good and understand anything medical (i.e. skin irritation, headache, or other side effects) must be referred to our prescribing physician. No side effects thus far. The device is a lifestyle change for sure, but David has continued his morning runs with a backpack on. We are going to try practicing golf tomorrow to see if possible. He is 75 years old and used to an active life. Trying Optune is worth it for us if it provides an extension of life and maintains quality. Understandable that it is not for everyone.

You really need to give it a try. My dr. Has faith in it. The first month can be brutal, but it gets easier as time goes by. I invested in a cooling pillow and mattress. That helped with the alarm. Also, invest in a cooling hat for when going outdoors.

The optune device has poor clinical support. They do not seem concerned with adverse events. Refer you back to prescribing doc. My doc reports his experience is an N of Me.. so on boardrding is weak and dependent on a trained care giver to change electrodes as needed. With this heat wave we need to change daily. Living with an umbilical cord on top of head is a challenge. I look forward to a coma as I must skip an occasional night of use so my wife and I can have 6-7 hrs of sleep without optune Alam’s waking us up. Changing batttery every 2-3 hrs is a drag, There is a plug in transformer but it must be higher voltage an I get more burning feelings when it is used.

@thomhorowitz, here is a list of discussions where member have talked about the Optune device https://connect.mayoclinic.org/group/brain-tumor-support-group/?search=optune&index=discussions

There certainly is a wide range of opinions in the posts into the FB Glioblastoma groups. Some regret taking some of the treatments as the quality of their life may be diminished earlier by the TMZ treatment. Others sometimes talk about a shorter life but with more "quality" followed by a more rapid death than they might have have if they undergo some of the TMZ treatments. This is my current choice, but it can change. Some want (or are asked) to live as long as possible regardless of the outcome, perhaps to be alive for their kids/grandkids etc. as long as possible. Every set of wishes is unique. I am truly sorry for all of us whether patient, family, supporter, friend or relative.

I tried the zofran, prochlorperazine and olanzapine. Nothing seems to help. I even tried infusion treatments. It is ok, because I only throw up on the first day. I’m 66 year old female.

I find the tmz very tolerable. I do take a zofran 30 min before each dose.

Bill was diagnosed in September and currently takes 425 mg of TMZ 5 days a month along with nausea medication and a laxative. Only issue he has had is some trouble staying asleep and then exhausted for 2 or 3 days after chemotherapy. Walnut size tumor resection last October with only downside was a little more vision loss with peripheral vision causing issues with driving. Otherwise no progression of the cancer so far🤞🏻🙏🏻.No optune as he has some dermatitis on his scalp and figured it would drive him crazy.

I was diagnosed last August. They found 3 spots. 2 of them were inoperable. I’m still on Optune and chemo 5/23. My Optune use age ranges 85- 92 each month. One spot is gone and the other spot is smaller. It hasn’t been the best dealing with glio, but I manage. I throw up every month with the chemo pills. My doseage is 250. Hope this helps . Take care, Kim