Multiple meningiomas in past, but now my new tumor is GBM4

@pnf24, if you are exploring Optune, you may be interested in this related discussion:
- Glioblastoma (GBM) trials and therapeutic devices (Optune)
https://connect.mayoclinic.org/discussion/gbm-trials-ttfields-brain-device/
I'm tagging fellow members like @ruthannray @thomhorowitz @IndianaScott @boilerbob who have experience with glioblastoma as a patient or caregiver.

How are you doing with radiation and temodar? Are the side effects manageable so far?

@colleenyoung thanks for connecting me with others who may offer advice. I am doing very well with the rad/chemo protocol. I’ve had 18 treatments with 12 to go. Only side effects are occasional fatigue and hair loss. I was MGMT profiling present so doctors said I should respond well to this treatment. Trying to arm myself with knowledge for next steps

I find TMZ very tolerable. I take a Zofran 1 hr pre dose each night. Bio markers of tumor can indicate if TMZ will be effective. I am now on it 5 days a month with dosage adjustment every other month after labs and follow up mri. Optune dose require a coach. Staff is script based and. Has never experienced living with the unit. They refer you back to oncologist again a person with limited experience with unit. Part of the training should be having to wear the unit for a few weeeks. Electrode conductive glue deteriorate withe perspiration so summer time May require pad change daily. A good chemical engineer should be able to find a better adhesive. Like on EKG and Holter tabs. They seem to bond to skin.

I agree that Optune staff has no real idea what wearing the device means on an ongoing basis. My husband tried the device but was not successful because he has some cognitive issues. Therefore he couldn’t retain the knowledge after sleeping that the electrodes on his head were helping him. Fortunately his Glioblastoma tumor was very responsive to the radiation and chemo so it appears little was forfeited. Still, I was disappointed he could not tolerate the Optune device.

I was diagnosed last August. I went through the surgery, 1 tumor was completely removed the other 2 are inoperable. That was followed by 6 weeks of radiation and chemo. I began more chemo (5 days) and Optune in December. Last MRI showed 1 tumor is completely gone and the 2 one is getting smaller. It is $21,000 a month to rent Optune. I live in WI, so Medicare pays for it. It can be a bummer hauling it around, but for the most part you will get used to it.😊

Thanks for all your input. I’m pretty sure if it is offered, I will try it. I’ve done so well with radiation and TMZ that it seems a shame not to give it my best shot if docs feel it will be beneficial.
Also, this may seem/sound vain but I know I’ll miss my hair! It’s something I always took for granted but it’s a part of my identity I’ve learned! But, it is what it is and living without hair is better than dying with hair!

I have been diagnosed with GBM stage 4 last August. I’m a 66 yr old female. I currently am on Optune(since Dec) and TMZ 250 mg 5/23 since Jan. It is a “pain” dragging the Optune around with me, but when I think of the treatment I’m getting makes it worth it!!