Pulling the plug...

After another week of vomiting, being bed ridden, losing weight, and losing some of my mental stamina, I decided to pull the plug on the SAHA.  In general. I have been in bed since mid November, missing lots of hours of my internship, and the last weeks of my semester classes.

On top of that, I've bounced between Dana Farber Hospital, NYU hospital, and Doylestown Hospital. Although I did have a response to the drug, there comes a time in many refractory patients lives where they have to ask the question - to themeselves:


Do I have a quality of life here? 

The truth, the reality is, we know I will never be cured. So, we try with all our might to manage what time I have left here, with specific treatments. To me, laying in bed, vomiting, watching TV everyday, and sleeping 24/7 is not a quality of life.

My weight is also tettering at around 100lbs which is scary in itself if I were to have some kind of infection, I hardly have any reserves or anything to fight back with. So, the decision was made yesterday, that I will discontinue the Verinostat (SAHA), it's even hard to believe in 2 months I lost 20 lbs -- to me, it makes the choice a lot easier.

Honestly, I'm weak in many ways right now physically and emotionally. But will hopefully have enough time to rebuild my body for the next tretment (SGN-35), which poses some pretty horrific side effects as well. SGN has a side effect known as neuropothy, several of my friends who are on it now can hardly feel their feet, legs, or hands, and are almost -- asking to be put in a wheel chair.

Slowly, I'm learning, that I'm losing my motivation for treatments, and pondering how much more my (our - other refractory folks) can take. It's sad that when I'm not on any treatments, I feel absolutely wonderful. But, once I have to take a dose of something, my body violently reacts to it.

I know I am here, I know I should be thankful.
But how far would you go, to stay alive?
How many drugs would you take, just to lay in bed everyday?

These questions unfortunately keep arising.
So, that is the news for now. Off the SAHA --
onto the new treatment most likely in late February or March.

Hope you all are keeping warm.

B