I haven’t posted in a while because I have been dealing
with further tumor progression and decisions concerning my future
treatment. A previous MRI in March of
this year showed tumor progression. At
that point, my doctor and I decided to increase my monthly Sandostatin LAR dose
from 20 mg to 30 mg and run another MRI in July. Unfortunately, the July MRI showed more tumor
progression. I needed to make a decision
on my treatment plan fairly quickly.
In my previous post, I described two clinical trials of
angiogenesis inhibitors that are open and recruiting at Dana Farber
(DFCI). After reading the extensive
clinical trial paperwork and discussing my questions with my doctor, I decided
to try Cabozantinib. This drug was
approved by the FDA for thyroid cancer in 2012.
As I previously posted, this is a phase II clinical trial, meaning the
drug is being tested in this case, for a different type of cancer (NETs) to see
whether it works and what might be the best dose. Cabozantinib
is in a class of drugs called tyrosine kinase inhibitors (TKI’s). I don’t have a huge understanding of the
differences between the angiogenesis drugs.
My limited knowledge says that there are two types of drugs that are FDA
approved and being used for NETs– TKI’s like or Sunitinib (Sutent) or mTOR inhibitors
like Evorolimus (Afinitor). The link
below describes how these drugs work:
http://www.cancerresearchuk.org/about-cancer/cancers-in-general/treatment/biological/types/cancer-growth-blockers
The way the clinical trial works is that I will be taking
the drug (3 pills) once a day and being monitored by my doctors every two weeks
(lab work and check-up). I’ll have an MRI after 8 weeks to see if there has
been any change in my tumors.
If my
tumors stay stable or shrink, I’ll stay on Cabozantinib. If they continue to progress, I’ll get out of
this clinical trial and try something else.
I’m not sure if the “something else” will be Afinitor off label or
another type of angiogenesis clinical trial.
I’ve been taking Cabozantinib for 2 days now and the only side effects I
am feeling are fatigue and a weird metallic taste in my mouth. The clinical trial consent form listed 125 possible
side effects! That was quite
daunting. So far so good, I hope it
stays that way and works to stabilize or shrink my tumors.
