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My Husband's journey with Glioblastoma

Brain Tumor | Last Active: Oct 21 5:20pm | Replies (174)
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@mgreen616

Hello,

I’m new to this group as of today. My husband suffered four seizures in Halloween and they found what they deemed to be a low grade, benign tumor. Surgery was scheduled to remove it on December 17th just to be safe and once it was sent for a biopsy, we were told that it was grade 3. We just found out today that it was changed to a grade 4 and still aren’t sure why it changed and what subsequent tests have been run. He is scheduled to start Temodar and radiation Thursday, January 21st.

We are still in shock that in a period of 2.5 months all of this has happened. I would really like to get a second opinion and possibly be a part of clinical trials. Some we’ve heard from have said that since treatment is starting we should do the six month radiation and chemo and then explore that but I think we need to be more aggressive. We’ve heard Mayo, UC San Francisco and Duke mentioned - are those the best places to contact? He is IDH1 negative but MGMT positive.

We have 7 and 9 year old kids - I’ve let school know and they have been wonderful but does anyone have any suggestions on how I can help them cope with something they don’t totally understand? Thank you so much.

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Replies to "Hello, I’m new to this group as of today. My husband suffered four seizures in Halloween..."
Scott, Volunteer Mentor | @IndianaScott | Jan 20, 2021

Hi @mgreen616 I am sorry to read about your husband's medical demands. Really tough, difficult stuff for him and you all, too. I am Scott and I add my welcome to you here at Mayo Connect. My wife had brain cancer and I was her primary caregiver during her 14+ year war with it. We have two children (grown) and two young grandsons who also had to deal with seeing my wife struggle with this terrible disease.

As far as clinical trials, I suggest the site below. It is the NIH's clearinghouse on clinical trials for cancer. It can be a very tool at times.
https://www.cancer.gov/about-cancer/treatment/clinical-trials/what-are-trials/where/clinical-center
Over the course of my wife's journey her tumor changed dramatically from time to time with no warning nor timetable. She often flummoxed even her medical team with how it changed, grew, or held off at times.

I know it will be of little comfort, but I will tell you our grandsons learned a great deal about how to interact with people with special/different needs than their own as they dealt with my wife's illness and its many permutations. They came to be quite empathetic and understanding of how disease can change, but at times not change, a loved one. Sometimes the changes were harder for our adult children to deal with than our grandsons. Odd I know, but in some cases young may be a benefit is what we saw.

I also remember times of change were the most challenging so I hope you get some time of stability.

Strength, courage, and peace

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