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DiscussionHow Have Your Glioblastoma Experiences With Temozolomide Been?
Brain Tumor | Last Active: Dec 6 3:16pm | Replies (53)Comment receiving replies
Replies to "The optune device has poor clinical support. They do not seem concerned with adverse events. Refer..."
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.
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.