Difficult Decisions

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.