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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martyc2016 | @martyc2016 | Apr 26, 2017

Glioblastoma stage 4: Does anyone else have the same diagnoses?

Colleen Young, Connect Director | @colleenyoung | Apr 26, 2017

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

Hi Marty,
I moved your message to this discussion where members are talking about glioblastoma stage 4, including @cure @sandydominy1 @cbrice @user_che69bc66 @dfelix @IndianaScott @barbkaser @js119 @ljsandlin and @dawn_giacabazi.

Marty, how is your wife doing? How are you doing?

Scott, Volunteer Mentor | @IndianaScott | Apr 27, 2017

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

Hello @martyc2016 My wife did. Willing to answer any questions you might have.

Sandy Dominy | @sandydominy1 | Apr 27, 2017

In reply to @dfelix "My sister has GBM and had surgery and chemo and tumor has come back. Looking for..." + (show)

I'd get radiation/chemo. My hubby did and he was on maintenance chemo for 12 months. No demonstrable side effects. If doing chemo, it was recommended to us to take the nausea pill 30 minutes BEFORE chemo. No nausea. He's got a great quality of life (going on European river cruise in October). Doing nothing was never an option for us.

taterjoy | @taterjoy | Apr 30, 2017

HI Marty! My friend has the same diagnosis, and is receiving excellent oncology consultation/care on the East Coast (closer to her home) at Duke Cancer Center. She is going on four years as a survivor! If you read the post that started this discussion, and the many comments, you will see my earlier post which summarizes my friends treatment and lifestyle protocols. She just had an MRI Scan at Duke two weeks ago and the results were "no tumor growth" which is what we always want to hear. She is doing well. Her very dedicated husband is her amazing caregiver. I hope that you (or your loved one) is getting excellent care and support.

And to Scott: It's so nice to meet you on this site, and to hear that your wife was a 14 year survivor. That is so inspiring! My heart goes out to any patient who is dealing with GBM, and to their families, friends, and care teams.

njtomato | @njtomato | Jan 27, 2018

We just found out my husband has glioblastoma. Any and all info is welcome from others.

Colleen Young, Connect Director | @colleenyoung | Jan 27, 2018

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

Hi @njtomato and welcome to Connect. You'll notice that I moved your message to an existing discussion about glioblastoma where you can meet other Connect members talking about their experiences, like @cure @sandydominy1 @cbrice @user_che69bc66 and others. I encourage you to read through the past messages and ask questions.

Here is another discussion from @tealover102 that may interest you:
- GBM patient caregiver https://connect.mayoclinic.org/discussion/gbm-patient-caregiver/

While we wait for others to join the conversation, can you tell us a bit more about your situation? What treatment options have been suggested for your husband?

jaxjo | @jaxjo | Jan 27, 2018

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

Hello, this is Jo. I am sorry about your husband. It helps to actively be involved in the treatment process. My husband also has a GBM 4. I am happy to answer anything about our journey. Every case is different. His beast was 78% resected by Dr. Q., followed by 6 week of inpatient rehab at Brooks in Jacksonville, Fl. He then did 30 rounds of radiation while doing outpatient OT and PT. He was in a wheelchair for about 2 months due to weakness on the left side. He could not move his left arm for 2 months and is still therapy for that. He now does chemo and is monitored monthly with MRIs. Tell me more about your situation? You can call me Jo.

renee08 | @renee08 | Mar 15, 2018

My husband is 39 he has a GBM. He did chemo and radiation and didn’t have any success with them. We went to duke looking for a clinical trial. They didn’t have anything currently open for him. He is enrolled in a trial at Columbia in nyc now. Worried for his next scan.

bjh369 | @bjh369 | Jan 16, 2019

My glioblastoma tumor was cut out the end of September & I had 6 weeks of radiation & temozolomide. I will have my MRI tomorrow to see if anybody new is trying to setup a new house in my head.
I know they say you have to wait a bit between radiation treatments because it is so hard on the person. Hang in there. Did your doctor offer the new Optune device?