How Have Your Glioblastoma Experiences With Temozolomide Been?

They do need care centers with nurse educators and training tools.

I. Take Zoran after my dinner and359mg 45 min later. No other t issue except drop in platelets after second round of tmz

my husband started it in June, he was trained on a thursday, but experienced 'burning' on a saturday. i mention this, because the support was very poor, the person kept telling him that it is possible to get 'warm' sensations and didnt really assess the difference in burn vs warm. then we had a problem with putting the wires in the sleeve. the customer service person told us that they did not have one in the office to see what i was trying to explain, as well I sent her photos of what we were trying but i had to email as they don't have texting on the weekends. At that point, we opted to wait until Monday to speak directly to our trainer who did resolve the issues for us. and i conveyed my dissatisfaction with the support. Overall i feel they are also not as transparent as to the division of symptom mgt (ie md) vs technical difficulties with the device, and they don't tell you that your Device support person who trains you is not an RN, so while I accept this now, it was frustrating to discuss what causes the burning and its impact on his skin . I think they should have introductory page of who is who and who you go to for what. I found that later in general literature, but i also feel the training materials are too disjointed, I noticed on the fb page, someone put a cheat sheet together and was willing to share that.
It is a quality of life issue with using this treatment, and it is hard to establish whether the sx you have are related to disease progression or issues with the tx or chemo. But as previous poster notes, it does get easier as you go on. I found that if i kept my concerns directed to my trainer during business hours, i felt more confident about the care my husband was receiving.
I also requested extra visits there is no protocol for how many visits per month, nor when they send the info to your md. That is another criticsim . But as i said before i now am bit more assertive much to my husbands chagrin, BUt i am a retired dialysis sw, so i know about what pt self care should be modeled after and realize that this is just a device they are responsible for, I have also told my husband that if he feels it is too confining, i understand if he doesn't want to do it. Granted he is on chemo and has an inoperable grade 4 gilo, but my feeling is we need to promote him having a good quality of life, since extending doesn't mean anything unless you can enjoy what you are doing. Good luck, also look at the optune fb page, very helpful. Obviously the company doesnot promote these because they do have stay with the guidelines of their research to get the optimal amount of validity.

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.