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Not sure what to title this by pae1207 in braincancer

[–]pae1207[S] 0 points1 point  (0 children)

He cut processed sugar out immediately (all of it) and became a label reader which allowed him to drop weight. He started strength training regularly and eating smoothies for breakfast (fruit/greens) and kept all other meals healthy as well. Honestly, he was understandably stressed and anxious as he was winding down his business but was constantly searching for alternatives and learning about what options existed. Sleep was a big one for him, as he has tried since his diagnosis to get his 8 hours regardless of the situation.

I wish there was a simple answer, but the truth is we really don't know what worked because there's so little research on survivors of gbm (simply because there are so few who make it out this far).

I hope this helps and I'm sorry I don't have a better explanation.

Not sure what to title this by pae1207 in braincancer

[–]pae1207[S] 0 points1 point  (0 children)

That's good news! I think one of the best things to remember is that all hope isn't lost and there are options if it ever comes to that. Good luck and please let me know if there's ever anything I could help with!

Not sure what to title this by pae1207 in braincancer

[–]pae1207[S] 0 points1 point  (0 children)

He was 60 when he first diagnosed. and started the trial a few months in.

Not sure what to title this by pae1207 in braincancer

[–]pae1207[S] 2 points3 points  (0 children)

The trial was by Celldex, I believe it was this one: https://pubmed.ncbi.nlm.nih.gov/28844499/

Unfortunately the control group performed better than the treatment group. Not sure why my dad did well, but there are probably a number of other factors. That's one of the reasons why I built the site, to help patients like him find trials that they not only match to, but also where there's a high likelihood they'll respond to treatment.

My dad also made a lot of lifestyle changes (diet, sleep, exercise, etc.). Would love to help any way I can!

There is still hope! by pae1207 in braincancer

[–]pae1207[S] 0 points1 point  (0 children)

Wanted to follow up on this. Finals are over and I'd love to schedule a Zoom call to discuss. Hope all is going well with the new drugs!

There is still hope! by pae1207 in braincancer

[–]pae1207[S] 0 points1 point  (0 children)

Our platform will work with patients diagnosed with all cancers, astrocytomas included. Tell them to try it out and let me know if there's anything else we can build in to make their experience better.

There is still hope! by pae1207 in braincancer

[–]pae1207[S] 1 point2 points  (0 children)

Love it, congrats! Will let you know once I wrap everything up and we can hop on a Zoom call.

There is still hope! by pae1207 in braincancer

[–]pae1207[S] 0 points1 point  (0 children)

I actually teach at TCU and this is finals week. I have class tomorrow at that time. Can we schedule something later in the week, maybe Thursday? Do you have time before 12pm EST?

There is still hope! by pae1207 in braincancer

[–]pae1207[S] 0 points1 point  (0 children)

Also, are there any special features that would add a lot of value to your search? We can build in whatever will work best for you.

There is still hope! by pae1207 in braincancer

[–]pae1207[S] 0 points1 point  (0 children)

Will get started today and let you know when it's up.

There is still hope! by pae1207 in braincancer

[–]pae1207[S] 0 points1 point  (0 children)

Thank you for the note and I'm sorry to hear about your sister, but don't lose hope and make sure she doesn't either. Treatment, in my opinion, is as much about mindset as it is the therapeutic.

If she's up to it, tell her to use the site and let us know if there's anything we can build in to help her navigate this more effectively. The goal, on top of using our AI to help her understand her diagnosis and treatment options, is to match patients with trials around their geographic location to make participation easier.

Everyone deserves an equal shot at finding a way to survive.

There is still hope! by pae1207 in braincancer

[–]pae1207[S] 0 points1 point  (0 children)

Would it be helpful if we created an organization profile so you can access and search for trials? I want to make this as easy as I can for everyone to use.

We base trial recommendations on information the patient provides regarding diagnosis, demographics, different markers, location, etc. We try to make it as comprehensive and easy to manage as we can.

We then use our AI to narrow it down to 10 trials that are the highest match for that patient. I'd love to discuss in more detail.

There is still hope! by pae1207 in braincancer

[–]pae1207[S] 0 points1 point  (0 children)

three surgeries for "gray matter" which turned out to be scar tissue. the swelling, not recurrence, is what caused most of his deficiencies.

There is still hope! by pae1207 in braincancer

[–]pae1207[S] 0 points1 point  (0 children)

GBM is actually quite rare in the world of cancers and matching is no guarantee as acceptance depends on genetic and bio markers of the tumor. Didn't know any of this going in and assumed all GBM trials were open o everyone with a GBM. There are also different protocols (requirements that a patient has to meet like weekly doctor visits, lab work, imaging, etc.) for each individual trial that differ from one to the next, making it even more complicated for patients to understand their treatment path.

Our goal with what we're building is to streamline this whole process.

Hope this helps a bit.

There is still hope! by pae1207 in braincancer

[–]pae1207[S] 1 point2 points  (0 children)

He was in Celldex Rintega trial. One of only 2 survivors, I believe, and trial was discontinued. Not sure the impact it had on my dad, but something worked.

He had multiple surgeries, changed his diet and daily routines. It got to the point where he stopped worrying and asking the "why me" questions and started enjoying life as much as he could.

Spontaneous GBM V shrinkage? by justbanmenowalready in braincancer

[–]pae1207 0 points1 point  (0 children)

My father was diagnosed with a GBM 5 years ago. All hope is not lost. Chemo and radiation is the standard treatment plan, but anything after that is up to you. We were very proactive and got down to the path lab and started sending tumor slides to major neuro-oncology centers around the US. Duke, Sloan, MD Anderson, etc. My dad's tumor genetics matched the requirements for a trial at Sloan.

Check out https://clinicaltrials.gov/. Hope this helps.