Something uplifting in this particular world. 

http://www.cbsnews.com/news/60-minutes-fda-breakthrough-status-duke-university-cancer-therapy/

Since it's Brain Cancer Awareness Month, you should all read this. It's very very very promising

Edit: Melissa actually called them about this study. They were thrilled to hear from her, since she's young, and very early in this fight, and she's hypoglycemic, which is something they haven't really had in their trial patients. They took her name and told her to contact them if she has any reoccurrence after surgery. So that might be a very very very optimistic trial she can jump into.
 

Last edited by alz (5/18/2016 3:26 pm)

alz wrote:

Surgery was Thursday. The doctors pulled 96% of the tumors and torched the other 4%. She's off chemo, follow up scan tomorrow to see where things are. 

She is doing very well to this point, in recovering from the very non-invasive surgery. I'll update as it happens. 

Always keep praying, wear gray!

 
Great news, Alz.

Basically a pencil sized hole over the eye socket and some type of cable tool went in. Seemed strange to me too, but it sure did a great job, and she had nothing more than a small gauze pad over her eye to mark the issue.

Last edited by alz (5/23/2016 3:56 pm)

Im glad everything is headed in a positive direction.

Sorry about missing this Fors. She just had clean scan #2. 

During the surgery they took 96% of the tumor. They left 4%, but "torched" it. I don't know if that was actually a heat element, or a chemical burn. The radiation is a clinical trial medication treatment that is hoping to shrink the remaining 4% to nothing. This doesn't cure the diagnosis however, it's just designed to prevent it from growing back there. To be honest, I don't know that I like that. If it's going to come back, I'd rather it come back in the place where there's room, but it is what it is. The one tangible benefit to her doing this trial is the advancement of medicine in this particular field. Glioblastoma can kill within weeks of being diagnosed. Depending on how long it grew before firing enough symptoms that it's host got it looked into by a doctor, and even if caught in time to provide options, it's so aggressive that most people do not survive 24 months. That severely limits the amount of candidates who can help out with medical advancements trying to find effective ways to fight this. 

Glioblastoma's (until possible recently when there was absolutely no "cure", now there possibly is) come back. You can get 100% of the tumor during surgery, and your body will build another. It's not a question of "will they", but a question of "when" sadly. That's just the nature of this particular beast. The scans will identify that the cancer is coming back. 

For us, that's important to identify immediately so we can get her into the Duke trial as a recurring patient, and explore a "humanitarian" admission even if she's not selected. 

Now that said, I have enormous hope for what is going on at Duke. They have cured this in their trial. Not enough to be declared legal medicine, but what they have done is successfully eliminate glioblastoma cells in their patients and any regrowth is being destroyed by the bodies immune system which is now identifying the cells as polio. At the end of the day, with stuff like this, all you have is hope. 

I have been terrible about updating this. 

Duke was notified, and though my fiance was not accepted to the polio trial, as the new tumors (yes there were 3, not just the 1) were not biopsied. In truth they were not big enough to biopsy without just removing them. So since there is no confirmation of recurring glioblastoma, they cannot yet take her into that trial. 

Now the good news. That's not Duke's only trial, and they are now involved in her case. She's been on a different trial, some drug with no name (just a number), and conducting their work through BJC here so we're not travelling out to North Carolina. Her last scan took 4 runs to find any tumor evidence from the largest of the 3, so whatever that trial drug is, it's fantastic. She's in a "remission" state. There's still some left, but she was offered to quit that trial if she wanted to. She said no, and the treatment continues. 

So far, all news is good. We're going through scan to scan and fighting hard. 

4 months later. Her last scan revealed growth, and there's another tumor growing in her brain stem that is involved with her spine. It is too risky to touch. They could do surgery and try, but it would buy her a couple of months at best, and the surgery will likely cause her other terrible physical issues. Her timeline is now 8-15 months. 3 weeks ago we were expecting maybe 7 years. So we're back in front of Duke hoping they have a miracle option. If not we'll pass her file to every major cancer center in the country and see if anyone wants to try something special on her. 

I know everyone reading this will have no ability to answer with anything more profound then simply, "I'm so sorry to hear that" or "We'll pray for you". In truth I am letting you all know this update while knowing full well that you are all just as helpless as I am. Life is so very unfair sometimes. The million "unexpected issues" are really bugging me. Things I never considered. I work a desk job, how do I do my job with this in the back of my mind? How do I listen to music without hearing the words because they kill me now? How do I see an elderly couple holding hands and not feel cheated?

Every day I am a little stronger for what I'm dealing with, and a little weaker knowing it's one less day I have with her. The time is being well spent, so that's something. It is precious, fun and valued. Christmas will be difficult considering it's probably our last. If we really get lucky, maybe we'll get a second. Maybe she'll live to see 37 years old... I wish I could truly explain the incredible highs and lows that come with this. I never thought (on either side) I'd experience emotions as strong as I have.

It's very hard to describe, but after 7 months of this. Humans have more than just "shock" to keep them protected. There's something of an emotional dulling too. You cannot be terrified of something forever. There's still fear, but it dulls. I do want to highlight that it isn't just pure bad. There's a real appreciation for a lot of shit that you would normally just blow off completely. The presence of anything decent and good is noticed now. It's highlighted and adored. I wish we lived every day of our lives as if we had few left. We'd all be much better people.

I know. Me too. Thank you Fors

Still thinking of you guys, Alz.