Well, I must say even with the freezing cold weather and all of the snow, it is comforting to be back "home"... It was quite the task shoveling all of that snow yesterday but thankfully today we didn't get as much as they were forecasting. It is so nice to sleep in my own bed again and be able to take a hot shower! I'm getting ready to go grab Chili so that should be nice too :)
Unfortunately however, I did receive some bad news today regarding the promising RIT clinical trial for EBV positive Hodgkins survivors. Apparently, the tumor block I sent to Baylor tested negative therefore eliminating me from the trial. I'm having a bit of a hard time with it right now but like everything else it'll pass and I'll continue to move forward. Dr. Bollard who is heading the study did say they are working on a vaccine for patients who are EBV negative but not sure if and when that would ever be ready and if so, what the efficacy would be.
So, just going to keep my chin up and keep the faith that the SAHA will continue to work and perhaps something else will come into the pipeline once it stops working.
My skin keeps getting thicker and thicker.
Again, more reason to be mindful of the here and now and squeeze every good drop I can out of life on a daily basis.
Cheers!
Chris
Update: Just heard back from Dr. Bollard, she mentioned to me the EBV negative killer t cell study may be ready to try in 9-12 months. Like I said, I have no idea if it will have the effectiveness of the current trial which has been developed over the last 10+ years. Hopefully I can buy another year or more out of this SAHA and keep my fingers crossed the EBV negative trial has the same effectiveness if it ever gets released...
4 comments:
chris,
Hang in there. I am living proof there is ALWAYS hope. I believe the SAHA will continue to work for you and there are new trials and treatments everyday!!! From reading your blog I can see that you do live life to the fullest and although you seem to have many bumps in the road you always get over them. This is just another little bump in your journey and you will get through it. Stay positive and Always choose hope!!
So happy you are home and in your own bed and shower and Chili is coming home!!!
Stay Strong!!!
Keep Enjoying life!
Donna
chris....was on line and found this quote and thought of you...Patients- Against-Lymphoma
"Although there is no certainty about what lies ahead, people live with the hope that all will go well for them. It is impossible to fulfill our life when we are utterly discouraged. But if we manage to keep our hopes in the future alive, we will be able to overcome all sorts of difficulties and go on living."
Thought this was very inspiring. Hope you are having a great day and keep living and smiling!!
Donna
Chris, as always you are in my thoughts - and like I commented on Hilary's blog there are so many people you don't even know that are pulling for you - me especially because I want a "Chris" to beat this obscenity - and my hopes are riding with you ........ hang in there
hey chris
just a note to let you know that i am thinking of you.... keeping you in my prayers...some feeling i can't explain, but somehow i just know goods things will happen for you... keeping the faith
gail
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