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Offering hope: Dad's journey with Glioblastoma stage 4
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
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Hi Lisa,
Looks like the exact same problems and dates for me. My last chemotherapy treatment is in July after the surgery/radiation/chemotherapy treatment I am now in the 6 months of chemo. Thanks for sharing your story about your dad.
I'll be looking for additional treatment with experimental drugs towards the end of the year. We shall see how that goes.
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1 ReactionHi Lisa,
This sounds very similar to my husband's story, which started this April for us. Thank you for sharing your story about your dad. Continued positive thinking and moving forward is huge and as our daughter has said "Dad's an outlier, he will get through this too"
I wish your dad the best my friend, we were on the same treatment path, but now we are further along.
Same diagnosis... Glioblastoma stage 4. Brain surgery was April 2023. Radiation (6 week) Temodar to follow
(1 year)
Currently, on infusion therapy and shows stable recently, but he is slipping.
Enjoy every day with your dad.
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2 ReactionsI lost my husband 107 days after he was diagnosed with GBM. I tell everybody dealing with this awful cancer to enjoy their loved one everyday because they might not be around very long. I do know of some who do make it several years though, which is great. I even know one man who was diagnosed at age 45 and is still working and doing great at age 60.
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1 ReactionMy son (now age 55) had surgery July 7 2023, Glioblastoma Stage 4. Wild type. Recurrence Oct. 2024 and another surgery and now on a clinical Trial at Barrow Neurological/ Ivy Brain Tumor in Phoenix, AZ.
He may need to now have radiation on an area on his Thalamus (inoperable area) and we are checking into Mayo in Scottsdale for Proton Therapy for the radiation.
Have any of you had the Proton radiation at Mayo?
Thoughts please .
Sue
of Temodar on June 11th also at Mayo Scottsdale.
He did very well with the radiation. He’s side effects were not too bad, very tired which is continuing. He’s losing the hair on the front of his head and lots of skin peeling from the radiation. That is resolving now.
Please contact me if you have any questions. Good luck and God bless,
Dana
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1 ReactionThank you for the reply. We await a call from Mayo on Thursday June 26. Not sure if they will look at his records but we want to be sure to have our second opinions on how to proceed should this area continue to grow (slowly it seems). Mostly
FLAIR signal right now but subtle increased over the last 8 months. If we go forth with radiation then I want to gather all information available to determine if we would stay at Ivy Brain Tumor/ Barrow (in Phoenix . Meeting with radio oncologist in mid July and next MRI in August.
I just got on this website and I'm glad to hear what people are saying. My husband was diagnosed with a GBM IDH wildtype on March 12th. He was riding his bike and afterward collapsed. He's 66 and in great shape. Brain surgery on his left frontal lobe, on March 21st removed 60%. It was too close to his speech and memory to take out more. Tomorrow he finishes the 6+ weeks of radiation. He had to stop the chemo pill 2 weeks ago because platelets were so low. In late July he'll begin the 6-month regime - 5 days of chemo pill, 23 days off. We live in Baltimore and he's at Johns Hopkins.
I'm having this debate with myself about learning the doctor's prognosis so I can have some kind of framework moving forward as far as time. On the other hand, I realize no one really knows. I'm not quite sure what to do about it yet. Step by step we go.
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1 ReactionIf 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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2 ReactionsGlad 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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