Questions about glioblastoma resection, radiation afterward

Posted by tracyknabel @tracyknabel, Oct 1, 2016

Hi. My husband was dx in Nov 2015 with grade IV glioblastoma. He had a biopsy but never a resection. (The tumor was in the thalamus region.) He began chemo and 6 weeks of radiation. He finished chemo in August. As of Sept 6th, the tumor has grown somewhat (encompassing the hippocampus) and the neuro-oncologist wants the resection done. His neurosurgeon thinks he has time however and should consider maybe more radiation. My question is this: why does my husband have to wait a year from the time his radiation ended to have another round of radiation done? And is it true that resection can cause the tumor to grow even faster? (The thalamic tumor cannot be removed.) Thank you for reading this.

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marykaym88 | @marykaym88 | Oct 10, 2021

In reply to @njtomato "We just found out my husband has glioblastoma. Any and all info is welcome from others." + (show)

I have been diagnosed with it and have had surgery. Started radiation and chemo pill this past weekend. Doing well.

marykaym88 | @marykaym88 | Oct 10, 2021

In reply to @bjh369 "My glioblastoma tumor was cut out the end of September & I had 6 weeks of..." + (show)

My doctor offered the optune and I plan to use it after radiation.

tommydb | @tommydb | Feb 26, 2022

In reply to @martyc2016 "Glioblastoma stage 4: Does anyone else have the same diagnoses?" + (show)

Unfortunately I do. I've done the entire round of chemo and radiation. Now, from home I do one week of chemo every month but triple the dose. No side effects yet. Next week I will have the "Optune " device put one on my bald head. I'm hopeful but my short term memory is junk. I'm guessing it always will be from here on out. So, for now I'm doing ok except for "where is my wallet" and stuff like that. I'll be back at mayo in a couple of weeks but so far so good. I guess I'll have to become a nerd constantly caring a note pad. My friend at work suggested notes on her iPhone but I haven't figured that out far. Weirdly enough I'm (was) an MRI tech. CT showed a normal brain but MRI a very different story.

suez5 | @suez5 | Feb 27, 2022

Yes I am living with the same diagnosis. Two surgeries in April, trial program with proton therapy and 6 months of oral chemo completed. Tried the Optune device for two months and then decided not to continue with it. My MRI'S are showing up negative so I am living my life One Day At A Time. Next MRI is scheduled for March 9th, praying it continues to be clear. My short term memory has also been affected on addition to staying on task. Blessed to be a miracle so far.

Colleen Young, Connect Director | @colleenyoung | Mar 8, 2022

In reply to @tommydb "Unfortunately I do. I've done the entire round of chemo and radiation. Now, from home I..." + (show)

Welcome @tommydb. You may be interested in these related discussions about the Optune device.
- Glioblastoma (GBM) trials and therapeutic devices (Optune) https://connect.mayoclinic.org/discussion/gbm-trials-ttfields-brain-device/
- My Husband's journey with Glioblastoma https://connect.mayoclinic.org/discussion/my-husbands-journey-with-glioblastoma/

@suez5, would you mind sharing why you decided to discontinue treatment with Optune?

Tommy, I'm not surprised your short term memory is "junk". Carrying around a notepad is smart or on a phone if that works for you. I'm a big believer in taking notes even when short term memory works. Why clutter the brain. I use Google keep. I have it on all my devices, so I can take notes whether I'm at work or out with only my phone. If I'm device free, I take a note on paper and then transfer it when I get home so all my notes are in one place. It's a good practice to develop and my brain is free to think rather than trying to keep all the tasks etc in my head.

Are you at Mayo now? How is it going with the Optune?

suez5 | @suez5 | Mar 8, 2022

In reply to @colleenyoung "Welcome @tommydb. You may be interested in these related discussions about the Optune device. - Glioblastoma..." + (show)

I wore the Optune device pretty much 24/7 for two months. I felt like it interfered with my lifestyle. My scans have been clear so I decided to stop so I could travel easier and enjoy my One Day At A Time!

tommydb | @tommydb | Mar 8, 2022

In reply to @colleenyoung "Welcome @tommydb. You may be interested in these related discussions about the Optune device. - Glioblastoma..." + (show)

Hi Colleen thanks for sharing. I’m at home in Montana now. However, my sis and I will fly back to Mayo tomorrow for a couple days..It’s day two of Neptune (I know it’s Optune:). I’m gonna give this thing a whirl for awhile and see how it goes. I think my best therapy is my friend below 🙂