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Friend has Brain Cancer Glioblastoma: What are the next steps?

Posted by susan159 @susan159, Jan 23, 2023

A friend Jane blacked out yesterday and was told in the ER that she has inoperable brain cancer and only a year to live. I want to find some hope for her. She sent me the MRI report which says gioblastoma. But does this have to be an immediate death sentence? Is there any hope of treatment for her? Does anybody know where her next steps should be taken? I'm hoping that the ER docs don't actually know about treatment options and that if she can get to the right people there might be some hope. If anybody has any insight, I sure would appreciate it.

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sjt10323 | @sjt10323 | Feb 27 7:48pm
In reply to @adrian092 "Hello, I was diagnosed with glioblastoma brain cancer in September 2024. After receiving an operation September..." + (show)
@adrian092

Hello,
I was diagnosed with glioblastoma brain cancer in September 2024. After receiving an operation September 27, I had 6 weeks of radiation and chemotherapy that was completed on 12/24/24. I am now in the phase 2 treatment with chemo medicine for the next 6 months. From there I'm not sure what I'll need or have. It is frustrating but your friend should seek a second opinion. I just received a Gamma Knife radiation treatment as well. I may be heading to Houston Methodist Hospital for further treatment if things do not get here in California.
Good luck with your future.

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Adrian092,
What would the Houston Methodist Hospital offer that maybe the MD Anderson Cancer Center in Houston does not? I was diagnosed in October of 2023 (3 weeks after moving to Texas from Iowa) with glioblastoma and I do want to prove it wrong with the life span of 16-22 months. Mayo has been on my mind quite a bit as an option if I decide to move back to Iowa.
Wishing you all the best in your treatment.

REPLY
3 replies
adrian092 | @adrian092 | Feb 28 10:17pm
In reply to @sjt10323 "Adrian092, What would the Houston Methodist Hospital offer that maybe the MD Anderson Cancer Center in..." + (show)
@sjt10323

Adrian092,
What would the Houston Methodist Hospital offer that maybe the MD Anderson Cancer Center in Houston does not? I was diagnosed in October of 2023 (3 weeks after moving to Texas from Iowa) with glioblastoma and I do want to prove it wrong with the life span of 16-22 months. Mayo has been on my mind quite a bit as an option if I decide to move back to Iowa.
Wishing you all the best in your treatment.

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Look at services provided by Dr. David Baskins, experimental drugs not yet approved by the FDA

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1 reply
sjt10323 | @sjt10323 | Mar 3 11:00am
In reply to @adrian092 "Look at services provided by Dr. David Baskins, experimental drugs not yet approved by the FDA" + (show)
@adrian092

Look at services provided by Dr. David Baskins, experimental drugs not yet approved by the FDA

Jump to this post

Thank you, I will check into this.

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Moderator
Colleen Young, Connect Director | @colleenyoung | Mar 10 5:45pm
In reply to @sjt10323 "Adrian092, What would the Houston Methodist Hospital offer that maybe the MD Anderson Cancer Center in..." + (show)
@sjt10323

Adrian092,
What would the Houston Methodist Hospital offer that maybe the MD Anderson Cancer Center in Houston does not? I was diagnosed in October of 2023 (3 weeks after moving to Texas from Iowa) with glioblastoma and I do want to prove it wrong with the life span of 16-22 months. Mayo has been on my mind quite a bit as an option if I decide to move back to Iowa.
Wishing you all the best in your treatment.

Jump to this post

@sjt10323, if you would like to consider a second opinion with Mayo Clinic experts in Minnesota or perhaps Arizona, you can submit a request here: http://mayocl.in/1mtmR63

What treatment(s) have you had since diagnosis? How are you doing?

REPLY
1 reply
nancyhafer | @nancyhafer | Mar 11 8:25am
In reply to @sjt10323 "Adrian092, What would the Houston Methodist Hospital offer that maybe the MD Anderson Cancer Center in..." + (show)
@sjt10323

Adrian092,
What would the Houston Methodist Hospital offer that maybe the MD Anderson Cancer Center in Houston does not? I was diagnosed in October of 2023 (3 weeks after moving to Texas from Iowa) with glioblastoma and I do want to prove it wrong with the life span of 16-22 months. Mayo has been on my mind quite a bit as an option if I decide to move back to Iowa.
Wishing you all the best in your treatment.

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Good to know…My Bill, a healthy 70 year old, is 18 months with this awful cancer. A new Glio is progressing. So he did just another round of Radiation and then started Avastin every 2 weeks in December. What treatment have you had?

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1 reply
adrian092 | @adrian092 | Mar 11 3:00pm

Hello Bill,
I've had radiation and chemo completed 12/24/24, now on 2nd week of chemo. The chemo medication is 5-days per month, will start the 2nd of 6-month program. Not sure after that...

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sjt10323 | @sjt10323 | Mar 11 4:50pm
In reply to @colleenyoung "@sjt10323, if you would like to consider a second opinion with Mayo Clinic experts in Minnesota..." + (show)
@colleenyoung

@sjt10323, if you would like to consider a second opinion with Mayo Clinic experts in Minnesota or perhaps Arizona, you can submit a request here: http://mayocl.in/1mtmR63

What treatment(s) have you had since diagnosis? How are you doing?

Jump to this post

I went through the initial treatments of radiation and chemo pills in November of 2023. In February of 2024 I started the 6 months of chemotherapy. I was on the cancer pill Temozolomide. I ended that in July of 2024. I was good for 4/5 months before there was a slight change that they want to check into.
I am doing quite well. I had little to no side effects and still don't. If I have any side effects, then I feel it is from the actual brain surgery. None of this has prevented me from doing physical exercise or normal routines I have done long before this all started. The only disappointing issue is I moved to Texas, and this happened 3 weeks after arriving. The medical location I am currently at is the 2nd location due to the disappointing reactions from the first location.

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adrian092 | @adrian092 | Mar 12 7:12pm

Hello Colleen,
I'm considering some treatment options in Houston Texas after my 6 months of chemotherapy. Can you share if your disappointing reactions were from the Houston area? Specifically, Houston Methodist Hospital? I hope all is well for you.

Thanks,

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1 reply
thomhorowitz | @thomhorowitz | Mar 13 8:19am

I am in Hollywood. On 10th round of tmz. Some skin rash but tolerable otherwise.

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Moderator
Colleen Young, Connect Director | @colleenyoung | Mar 22 3:21pm
In reply to @adrian092 "Hello Colleen, I'm considering some treatment options in Houston Texas after my 6 months of chemotherapy...." + (show)
@adrian092

Hello Colleen,
I'm considering some treatment options in Houston Texas after my 6 months of chemotherapy. Can you share if your disappointing reactions were from the Houston area? Specifically, Houston Methodist Hospital? I hope all is well for you.

Thanks,

Jump to this post

@adrian092, I believe your question about care in Texas was direct to @sjt10323, who can share more.

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