Hi everyone. First off thank you all for your thoughts,
information and advice. You guys keep hope alive. I'm here to try and figure
out what else we (my sister, brother and I) could be doing for my mom.
I'm hesitant to make this post because I
do not know the make up of my moms tumor(s) however, I do know that we need to
do more for her now, before it's too late. I can try to get the pathology
report from UCLA and post more on that when I do. I couldn't tell you what
methylated or IDH-mutated mean but I do know my moms situation seems to be
getting worse.
Without a pathology report I will try to
give a brief backstory so you get a picture of what's going on here. I hope
this is the right place for this and I will try to keep it as brief as
possible.
Jan 2008: Ended up scraping off side
mirror on the car and realized peripheral vision was gone. Eyes checked, no
problem. MRI showed brain tumor. Surgery Jan 11, 2008 at UCLA with Dr. Daniel
Kelly (Now at St. Johns Santa Monica) with complete (or as close to complete)
resection as possible. Diagnosed at age 51 with Stage 4 GBM and received all
the scary statistics about her being lucky to make it a year. She bounced right
back from the surgery as if nothing every happened. Up and about within a day
or so back to her normal routine. 2 years of Temedor 5 days out of the month
and around 60 rounds of radiation later, life was good and stable MRI's became
the norm although every MRI was never any less scary awaiting results. We
thought perhaps she was in the clear. Her vision also came back :)
My dad, her caretaker passed away
unexpectedly in June 2012. I only bring this up because I believe stress may
have played a big factor in the next update.
Jan 2013 MRI was clear. In fact, we celebrated 5 years remission. She
then missed a scan in Feb '13 due to an insurance mix up, and finally had a
scan in March '13 which showed a pea sized recurrence in the original tumor
location. Prior to this she was doing so well that the doctor was going to
allow her to get MRI scans less often. She was off Temodar for 3 years before
this recurrence. So she went right back to several more radiation
treatments and another year of Temodar (one week each month) and MRI scans
monthly. Her scans showed the tumor to be shrunken and the site to be stable
with no new growth.
March 2015 MRI showed new but small growth
in a new location close to the original tumor site but a bit deeper in.
Oncologist tried new chemo, CCNU and were to follow up in one month. We were
told she has had her lifetime max of radiation so that was out. Next scan
showed the Tumor almost tripled in size. Options were try another chemo,
surgery if the Tumor Board deemed it appropriate and a clinical trial going on
at UCLA, Toca 511 where they inject a virus into the tumor cavity directly
after resection. The remaining virus was to infuse itself in remaining cancer
cells later to be killed by pills she took. We got word that surgery was an
option and were able to enroll in the clinical trial. Surgery was performed at
UCLA on May 14th, 2015 with Dr. Linda Liau. MRI before surgery showed more
growth. Surgery was as successful as possible and Dr. Liau was somewhat
surprised as she said so much of the tumor she pulled out was "dead."
My mom had more trouble recovering from this operation. Memory loss for a few
days, permanent vision loss and basically a big blow to her spirits because she
didn't bounce back. She was still very much interested in recovery and getting
stronger. As part of the study every 6 weeks she got an MRI and she took pills
that were I guess anti-fungal in nature however, they were to head to the
implanted virus, that had infused itself in remaining tumor cells and form a
chemotherapy to destroy left over cancer cells. My mom began recovering,
walking more normal and getting back to normal life minus navigating
differently due to a permanent visual field cut from surgery.
Things were looking great until October
8th 2015 when a scan showed some "changes." We were told it was
nothing to be concerned of yet and that they weren't sure what was going on
actually. Not the most comforting news. We were to follow up in a month or
sooner if things got worse. My mom began to walk more poorly (always veering to
the left) and crashing into walls, her memory became worse, most scary she just
started acting odd like throwing away her fork and knife and looking for things
around the house that were in completely different areas like the telephone for
instance. She is aware that she is getting worse and is depressed and spends
most of her awake hours crying. (We saw my grandma die from a metastatic brain
tumor from lung cancer and it was not pretty) We tried to get my mom in for a
scan, this time they wanted to do a DOPA-PET scan, which we were told might be
the future of monitoring brain tumors. Insurance went back and forth for around
2 weeks on approving and denying and then approving only to have UCLA "run
out of the DOPA injection dye."
This brings us to now. Nov 3, 2015 new
scan shows growth and not just one area. The larger area is the one that
appears to be messing up her walking. Our oncologist stated there looked to be
a lot of inflammation around the area along with necrosis. He states that
surgery on that area is probably not an option and may do more damage than
good. We will seek a second opinion of course.
Nov 3, 2015 she had an Avastin infusion
and was put back on Temodar 5x per mo. The Toca 511 trial has been put on hold.
Her spirits are destroyed.
Throughout the course of this she has
taken many supplements (mostly the first few years) Lots of different mushroom
powders and something called Ave, some type of wheat germ for boosting her
immune system. March of this year she started the CBD/THC Cannabis oil off and
on. She can't stand feeling "high."
As of now she's taking:
Temodar
Avastin
Keppra 750mg 2x daily
AHCC mushroom supplements.
She was taking Wellbutrin but I'm not sure how consistent she is.
It's probably too early to tell if the new
drugs have done anything however, prior to them we were seeing a steady decline.
Since getting them a few days ago she at least doesn't appear to be any worse
symptom wise.
We were told if she responds to treatment,
great. If not she could be gone in a few months. I'm hoping this could at least
buy us some time to get her back on the right track.
So, what would you guys recommend we add
in immediately along with her Avastin and Temodar?
I'm sorry this is long and thank you. If
someone would like to email or talk on the phone I'm sure that could be
arranged.
