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Offering hope: Dad's journey with Glioblastoma stage 4

Posted by lisamorris4272 @lisamorris4272, Jan 8 7:11am

I thought this may give others some hope.

My Dad 72 was diagnosed last April 2024 with a GMB stage 4 after having some vauge episodes and we felt something wasnt quite right, got him in for a scan to find an egg sized tumor in his frontal lobe, 2 weeks later we seen the specialist who said it was a suspected GMB, one week following that he had surgery to remove it, as dad is very fit and healthy for his age they felt surgey would be a good option.

we were given the options - symptom controll he would last 3-6 months.
biopsy and radiotherpy 6-9 months
crainiotomy 12 months !

As you can imagine our world fell apart. Dad is very hisotic and wants to live not letting this stop him at all, so HE said i want the operation. After the operation Dad was churpy and back to his old self, he didnt seam to have any side effects, just tiredness to be expected.

He came home two days later and was back to trying to work on the house ! he got a post op blood clot in his lung, which nearly killed him. He then started radiotherapy 6 weeks post operation, 5 days a week for 6 weeks, alongside daily chemo tablets and no progression was seen. Then he started on chemotherapy medication he has been on this for nearly 6 months on the full dose, he takes tablets for 5 days once a month. he hasnt been unwell or sick, hes just feels tired the week after taking it.

So far his scan is clear as to be expected.

Chemo will stop in Feb and he will have another scan then he is to have 3 months off treatment and review.

The hardest part for my Dad is not being able to drive, being in the motor trade all of his life, owns a harley and campervan this is the most heartbraking part for him, having to rely on my mum to take him places. But he is doing so well, you wouldnt even know this has happened or is happeing to him. I feel mind set has a huge part to play in this, he will not be defeated without a dam good fight.

As a nurse myself i was very sceptical at the begining being realistic of what to expect, counting down the months, wathcing and waiting for deteroration, but he has exceeded any of that, and nothing i read or have been told adds up to how he is doing.

It really is an individul's fight.

We were told he had a year! i dont belive that to be the case, we are 8 months post Crainiotomy and he is doing fine so far.

We have all gotten into a new grove of living with this, it helps that since this my Dad has become a great grandfather, and He has his grandsons wedding to look forward to in march 2026, these mile stones of wanting to live give him a goal to strive for.

As hard as it is to see and know he is thinking is this my last thing the will to live is incredable, just seeing this now as an insider i have a new admiration for people. it is so easy to look on the downside and dwell in the darkness. I am truly thankfull for everyday i get to see my Dad.

We dont know what tomorrow brings, i can only tell of our journey as it happens so far.
i wish you all well, those struggling with GMB xx

Interested in more discussions like this? Go to the Brain Tumor Support Group.

Moderator
Justin McClanahan, Moderator | @JustinMcClanahan | 3 days ago
In reply to @randallshields56 "Glad to hear you are positive, if ok with you, id like to pass on a..." + (show)
@randallshields56

Glad to hear you are positive, if ok with you, id like to pass on a couple things, fst, never give up, prayer chain and lastly the brain has a great way of following your lead. Lastly. Keep your strength up even when you don't want to.

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@randallshields56, you'll notice that I removed your personal phone number. Connect is a public forum. We recommend sharing personal contact information using the secure private message function. I might also add that by sharing here in the forum, you are connecting with several people where all can benefit from group support.

I’d like to underline the benefit of sharing in the group discussions. By posting in the discussions in the Brain Tumors group you benefit from the knowledge and experience of many members.

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1 reply
randallshields56 randy Shields | @randallshields56 | 1 day ago
In reply to @JustinMcClanahan "@randallshields56, you'll notice that I removed your personal phone number. Connect is a public forum. We..." + (show)
@JustinMcClanahan

@randallshields56, you'll notice that I removed your personal phone number. Connect is a public forum. We recommend sharing personal contact information using the secure private message function. I might also add that by sharing here in the forum, you are connecting with several people where all can benefit from group support.

I’d like to underline the benefit of sharing in the group discussions. By posting in the discussions in the Brain Tumors group you benefit from the knowledge and experience of many members.

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The reason I put my number in, Was so someone who knows the system could call me and walk me through getting started. Without criticism or no patience. Im recovering now not just from brain cancerous tumor but went 11 months seizure free till last week where I had 10 in like 4 days. I have to take notes and. I learn quicker when someone with patience can walk me through, step by step and I can take notes.
Thank you

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randallshields56 randy Shields | @randallshields56 | 1 day ago
In reply to @randallshields56 "Glad to hear you are positive, if ok with you, id like to pass on a..." + (show)
@randallshields56

Glad to hear you are positive, if ok with you, id like to pass on a couple things, fst, never give up, prayer chain and lastly the brain has a great way of following your lead. Lastly. Keep your strength up even when you don't want to.

Jump to this post

Don't know how much you believe in dreaming .
Parts of the brain 🧠 never used help though dreams. Have a issue think about it just before bed and dream about what you need, relax and drift off thinking of the problem. It's helped me many times.

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adrian092 | @adrian092 | 1 day ago
In reply to @jeff2025glioblastoma "If I were you, I would try to find some kind of Clinical Trial as well...." + (show)
@jeff2025glioblastoma

If I were you, I would try to find some kind of Clinical Trial as well. It sounds as if he is still in a early status and could qualify for "Newly Diagnosed"
I would imagine the tested his tumor for any mutations (CARIS report) and that would indicate if he is methylated or unmethylated.

TMZ works best with Methylated status. He may also be IDH1 or IDH2 and that would also give him a better prognosis. There is a new drug out for the IDH1 or IDH 2 status.
Check with your doctor to see that this testing was done on the tumor.

Check out the organization listed below, they offer a lot of videos and information for Glioblastoma and they have a wonderful book (that hopefully is still free) This book lists all type of information that is helpful to a new brain tumor patient.

The Musella Foundation is a non-profit organization dedicated to:
Empowering brain tumor patients and their families by providing emotional and financial support, educational resources, and advocacy.
Raising funds for brain tumor research to advance effective treatments.
Some key aspects of Al Musella and the Musella Foundation's work with brain tumors include:
Early Pioneers in Online Support: Al Musella was instrumental in establishing one of the first online support groups for brain tumor patients and their families, leading to the creation of the Musella Foundation and the virtualtrials.com website.
Advocacy for Patients: The Musella Foundation actively advocates for better access to promising treatments for brain tumors, as seen in their efforts to advocate for the approval of Avastin.
Clinical Trial Information: The Foundation provides information about clinical trials and other treatment options for brain tumors, and their work contributed to the development of the clinicaltrials.gov website.
Resource for Patients: They offer resources such as "The Brain Tumor Guide for the Newly Diagnosed" to help individuals navigate a brain tumor diagnosis.
Research Support: The foundation funds brain tumor research and collaborates with organizations like Cancer Commons on research initiatives.
Focus on Glioblastoma: Al Musella, in particular, has written about approaches to treating glioblastoma, a highly aggressive type of brain tumor.
In summary, Al Musella and the Musella Foundation are dedicated to improving the lives of individuals affected by brain tumors through various forms of support, education, advocacy, and research.

Hope this is helpful to you and to others. All the best to everyone, It is very stressful trying to find as many answers as possible and give your loved one as many months/years as possible:)

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Thank you for all this information. I'm just ahead of the schedule you outlined, having finished with radiation and chemotherapy. I am now in second part of treatment taking chemo only with July being my last treatment. Not sure after that what will proceed, considering clinical trials on new medications. I'll research Al Musella and the Musella Foundation too.

Thanks again

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