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
11 comments:
HUGS, it's definately a balance that only you can decide on. Quality of life is huge...sending healing vibes your way and prayin'that you feel more like yourself very soon
Bekah, I simply don't have the words to express how badly I feel--how sorry I am--that you are going through all this. The emotions you feel and the difficult questions you are asking yourself must be overwhelming at times. No matter what you decide, you can always change your mind. I send you best wishes and love.
Sending my love xoxo
Sounds like you're making the right choice, Beks. Quality of life is very important. I'm always here if you need anything. XO
Kelly
Aww Bekah - I am so sorry that this cycle is nasty too.
But, I am glad you know yourself well enough to call an end to this. Here's wishing you calm days to find your strength and spirit.
Hard questions - I know....
Love you.
K
All my love and thoughts to you. Certainly, if you do not sense progress on your current course, the sensible thing to do is -- to do something else. I worry about your weight. When Austin was in the hospital he learned quickly that cancer patients can get almost anything they want - donuts, slabs of pork, whatever. And at practically anytime the kitchen is open. You are surrounded right now by people who would love to bring you something to eat. Think about food you like.
I'm so sorry you're having to go through all of this. I have no words of comfort...only prayers being sent your way.
Isabelle
B
As usual I don't have the brain capacity to articulate what I want to say. It would probably sound patronising or condescending. I just don't have your flair for the written word.
I haven't been where you are so can't even imagine thinking about let alone and making the decisions you have.
All I can do is send love and hugs.
Thinking of you Bekah, and sending the most positive vibes, prayers, thoughts, and everything else I can think of your way right now...
Kerri
kjs4usc
You implied that "Pulling the plug"
referred to stopping the SAHA treatment, not stopping treatment altogether, and I'm glad you are still fighting. Earlier, you reported 30% reduction in tumor activity, but it looks like you also suffered a 20% loss of body weight in general. That is a tradeoff, and it doesn't sound like one that's in your favor. If you had 30% reduction with 0% weight loss that might be different, but as it is now, it seems that stopping SAHA is a decision that doesn't have to be made based on "quality of life". It simply wasn't paying off in terms of cost/benefit.
Do you have someone who is searching for treatment ideas for you, or other trials? I spent quite a bit of time searching for Austin - we had quite an elaborate alternative treatment plan ready in case things went bad at Alta Bates Hospital. But planning like that needs a team, one that is working for you all the time. You probably have people doing that already, since you moved from trial to trial in a fairly smooth manner last year.
One thing I saw recently that made me think of you is Thalidomide. Thalidomide treatment is such low toxicity, that I wonder if it might not be helpful. Not a lot of research has been done yet, but there were a few positive surprises. Perhaps you could look at it. See: http://www.ncbi.nlm.nih.gov/pubmed/16522545
The drug is tightly controlled now, though - but it is being used actively against, surprisingly, leprosy.
B
My very sincere thoughts and prayers are with you.
P
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