Anyone Know of Medical Treatments?

[Our03z4]

In a previous post I had asked for thoughts and prayers, thanks to all who replied! Today was my MIL surgery and unfortunately it came back the worst news it could have. Anyone know of any treatments or clinical trials for Glioblastoma? They are giving her approx 12mths to live so we are willing to try anything to prolong her life. (Even holistic) Thanks in advance for any advice or help!!!

[2000cs]

What does she want? I’ve thought about this question for myself, and my answer is to make those 12 months the best I can, not spend it getting infusions and feeling even worse. So that’s in my directives.

I don’t have an answer to your specific question; but I do wish her and you all well and a full life ahead, whatever the duration.

[spazzyfry123]

While I’m of no help for suggestions, I am very sorry to hear! Best wishes and hopefully you and family can find what you are needing.

[2000cs]

You might not get much help here, nature of the site. But try inspire.com and search gioblastoma. Several threads there that might be helpful.

I use the site for a different condition, and would add that of course there are a range of opinions and approaches. Some are pure quackery and others helpful; as with most things Internet, separating the wheat from the chaff is the challenge.

[OtoPA]

Mayo Clinic or MD Anderson are heavy hitters

[antgenn]

My MIL passed of Glioblastoma at the age of 57 back in 2000. It was in a different country, the surgeon gave her 3-5 months and she lived for 18. She was active for the first year and could take full care of herself and my 10 years old son making some funny "mistakes" on the way. The last 6 months were brutal for everybody...
As far as I know there is no treatment available now, chemo does not work on the brain. I asked my friends who work in cancer research at UPenn and they confirmed there is no cure so far.
It may sound cruel, sorry, but it's real life experience. Just take care of your MIL and make it comfortable all the way.

[cmyx6go]

I'm so sorry to read this. I know it's a very personal thing, but I agree with what others have said regarding quality of life for the time she has left. Stay strong.

[Maynard]

My condolences, surely one of the worst pieces of news to get. Your oncologists will be able to search for relevant clinical trials that you would be eligible for; there is a good nationwide network for this (likely they already have looked, so if they are telling you you aren't a candidate it is highly unlikely you'd find anything else that is really legit - do make sure that they know how far you'd be willing to travel for this, since they may screen by location). Internet will be full of irrelevant or misleading info, much or most of it won't really apply to your specific situation. Beware that these types of illnesses collect parasites who will try to sell you hope, often wrapped in quasi-scientific conspiracy theories; if there were a miracle cure that 'they don't want you to know about' it would already be in clinical practice.

[Our03z4]

She was told today by the surgeon of the prognosis. She took it about as well as one could expect though didn't ask for a timeline. We'll leave that for another time when she's ready. She is willing to throw everything at it like we thought she would. So far the med staff seems willing to let us try anything so that is what we shall do.

The wife and I stayed up most of the night reading research papers and have a list to talk with the oncologist about. We got the surgeon to send off some tissue for testing for a few promising things we read. Going to have a couple allergy tests done hopefully today to see if we can use a few certain things as well.

My wifes family is a tough bunch and they don't give up easily so we will give it our all. I'm not as tough as them and I'm doing my best to be what they need.

[floridaorange]

If you are any good at photography or if they have a close family friend who is - take lots of group photos and videos this Christmas - don’t worry about feeling weird just do it.

[Our03z4]

Originally Posted by floridaorange

If you are any good at photography or if they have a close family friend who is - take lots of group photos and videos this Christmas - don’t worry about feeling weird just do it.

Absolutely. My FIL just lost his job right before this happened so he'll be taking the time to spend with her. Wife and I are taking the next couple months off as well. Going to plan on doing whatever she wants to do while she still can. We already have plans for a larger family gathering for Christmas, just a shame it takes something like this to make that happen. Enjoy you time while you can folks, never know when it will be taken.

[rebekahb]

This is a tough diagnosis to get on any day much less around the holiday season. My heart goes out to your MIL and family. Ask for any and all genetic testing to look for biomarkers and chemo sensitivity testing.

Also, opt for a 2nd opinion no matter how much y’all like the current doctor. If you have one of the cancer giants close that’s always a great spot because of the resources and trials they have access to.