Offering hope: Dad's journey with Glioblastoma stage 4

@lisamorris4272 its awesome that he is a fighter, just like me and yes its hard to watch him go through the hard days. sending a prayer your direction as i type............OK prayer sent. i believe in prayer groups i have many that monitor my progress daily and i try to keep them posted. i carry my phone and cane with me daily, yesterday was a hard day, had to call and have someone come get me i could not manage the rest of my walk. came home where i am staying with my daughter and family. got in a good rest cycle and going to try to just have this as a rest day. tomorrow back to my workouts. get into some prayer groups, it has a way of changing things for the better if nothing else comfort. i am 69 this week and recovering from lung and brain cancer.so far but God i have been healed from the cancer , got a long road to go but be positive for your dad, he can see the expressions on your faces so mask them a hair, growl if you like and say i am here to help you fight , we can make a difference, say it with love and commitment. and get more prayer groups going , all faiths. Have a blessed day. now i have to try to figure my collapse from yesterday and carry on with support of family, friends, angels, and god. Amen

So dad update
The tumor grew back near the same site, because he was so well in himself the offered another craniotomy which he snapped up.
He has this is Aug this year now he’s 19months post finding the diagnosis. Two craniotomy’s radiotherapy and now in his second round of chemotherapy,
Because the tumour had started to grow before the last round of chemotherapy ended they stated it didn’t work. The chemo he is on now only had a 5% chance of working, but he is a fighter and he will do anything.
Mid round he is feeling tired and lack of energy is seen, then he picks back up and does ok for a few weeks then another dose every 6 weeks ..
he’s for a scan in a few weeks and I am scared..
I’m scared that one day they will say sorry there’s isn’t anything else we can do..
Dad however is an absolute legend he is getting on with it and his life, you wouldn’t know he’s Brent bough all of this.
We did loose a bit of dad after the last operation, lost a little bit of his sparkle, and he isn’t as fit as he was and that’s noticeable.
But his fighting spirit remains and his humor and we are all so thankful he is still here..
So we watch and wait and see what happens next.
Xxxx

Denial is common, so don’t worry about that. He is fortunate that the tumor is easily accessible for surgery. Take comfort in that. Life is short for us all, and none of us know how many days we have remaining. Enjoy whatever days you have with him. He is super fortunate to still be able to do so many of his routine activities. God bless and good luck.

Little Dad update —
We are now 15 months post diagnosis and craniotomy, radiotherapy and chemo.
It’s been a rollercoaster of a ride.
But Dad is still doing well slightly more confused and muddled than usual but other than that he’s still singing in his band, playing boules and living life, been on a cruise etc and fighting this hard. With 8 weekly scans throughout.
This week dad had a review, he’s had a small tumor just not doing much since 5-6 months ago, this week they told us they couldn’t tell if it was pseudo progression (mimic) or true progression. And to monitor. The day after we received a call to say they have reviewed all of his scans with all the team, and they feel it’s real progression .
We were told this means the chemo hasn’t worked, and the next line of chemo has a5% chance of working and the side effects are harsh. They have advised he have another craniotomy to remove this new area, which it is on the top of the brain and easy to get too.
What a rollercoaster..
Dad is still in denial and doesn’t believe this is what he has.
Then we were told this Op will give him come more time, that was just heart wrenching.
Each time something happens it’s like an awakening to what’s going on, and you realise this is still happening, because we have a way of shutting it out to cope.. so you start greaving all over again.
now we wait for the discussion with the neurologist and get a date.
I truly sympathise with all of you going through this process, and families.. because this is the hardest thing..
Now I am left wondering how long will he grab back from cheating death? 6 -8 months ???
Thinking that our family holiday could be our last, or Christmas etc is so very hard. But at least we know he’s on borrowed time, so we can really appreciate him and love him..
life really is tough xx

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

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.

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

@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.

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.

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:)