Wednesday, July 17, 2013

2 1/2 weeks in Houston....maybe....

I called Jackie at MD Anderson as Dr. Javle brought my case before a panel to see if they had any ideas up their sleeve. Dr. Crain, who is over the Proton Therapy Program has decided they can do proton therapy without getting too close to my heart. We first, have to get it approved by insurance, and I also want it to be after we are back from our family vacation. The part they want to radiate is the small tumor in the dome of the liver that they could not radiate before due to being too close to the heart.Last spring, they radiated the large tumor and it is now shrinking/less FDG avid. In some cases, I have read that proton therapy can give you a 5 year survival rate which is about the survival rate they give you with a resection. AND....maybe if it all worked perfectly as I could only hope, the clinical trials for my two mutations will be closer to being approved.....or another drug will come along before my kidneys or liver give out from all this radiation/poison being put into my body....and offer me MORE time. Life is all about TIME.

I have searched the internet but mostly just unsure what to do. I think I want to do this. It could give me a break from Chemo...maybe not. I would get 15 treatments in a row and then be done. This is the radiation that pinpoints the tumor and leaves all of the surrounding area and organs alone.  I would really like to find a family we could stay with or we might, as a last resort stay at the St. Dominique Village. It is basically a nursing home but has a few rooms for people being treated at M.D. Anderson. Not a lot of room to I don't know where we will stay.  A lot to ponder on before we even make the decision to take this route of treatment. Any suggestions or offers are appreciated if you have an extra room. We would be willing to buy our food and maybe pay some rent for staying in their house, shed, garage, doghouse....kidding.

My family and I have a lot to think about over the next couple of weeks....keep us in your prayers and ask God to lead us in the right direction with this big decision. Any of you cholangiocarcinoma patients who want to chime in here are more than welcome to....especially if you have had proton therapy.

Hugs and God Bless!!

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