So, I landed yesterday morning uneventfully :) Went straight to Karmanos and was a little dismayed by what my doctor had to say. Yes, Dr. Ramchandran managed to pee in my cornflakes if you will... He had supposedly been holding out having this conversation with me but for whatever reason yesterday Dr. Ram was Debbie Downer and advised me that I might want to check with the Doc's there about looking into an Allogenic Stem Cell transplant. He said he doesn't envision these clinical trials working for me much longer and mentioned I'm on a "hot streak" and isn't overly confident that these trials will keep working for me, mwah mwah mwah.... It was pretty sobering news (as if I don't live with that thought every day) and made me question for a while if I was doing the right thing and maybe I should look into a donor... The funk lasted until I went to bed last night but woke today feeling better. I know that my chance for a cure most likely has passed (at least for what's available in Tx today) and quickly have gone back to survival mode and the mindset of treating this as a chronic disease. It's just that I haven't ever been given a "timetable" and Dr. Ram told me yesterday that he can't see me getting more than a couple years out of the way I'm going. Who wants to be told that?! I think these oncologists get antsy and feel like they need to do something... His rationale is that I'm either in remission or very close and right now may be the best time to try and eradicate the disease for good. It's funny though that when I asked him what he would do if he were me he couldn't answer saying he had kids, etc...
All I know is that while a cure would be great, getting an allo transplant is by no means a sure bet. Cure rates for Hodgkins are less than 20% with an allo and the chance I develop graft versus host disease is around 50%. To me, those numbers just don't add up not to mention the year of hell I'd have to go through after getting blasted again (losing all my hair, fingernails, feeling like crap, etc.).
So, now that I got that off my chest, I'm just going to continue to live in the moment, enjoy my relatively good health (minus the back pain and once I can get a handle on this fatigue and these damn in grown toe nails!). I'm going to ride the RAD001 train as long as it'll take me and hopefully when it stops working, my little genetically modified killer T-cells which are growing down in Houston will be ready to go and I can jump on that with the hope that I can continue to kill cancer cells in a relatively non-toxic kind of way.
I feel pretty strong physically and mentally (minus the hiccup yesterday).
Speaking of hiccups, the path for my Mom's treatment has hit a snag. Due to some incompetence by her team, they failed to state on a PET scan script that she was diagnosed with cancer and Health Alliance Plan (HAP) denied the test. After some prodding by me and some digging by my Mom, she found this out and it's been a scramble ever since to try and get approval for the scan so she can be properly staged and prescribed the right Tx. My aunt Deb who works at St. John health system asked around about her disease though and was told that it is highly curable so that was nice to hear. I just hope she can get started asap (once we gather all the information) because I know from experience the waiting can be the hardest part (Tom Petty says it best!).
As for Rich, it's been decided by his team that they do not need to give chemo and it's watch and wait which is good :)
Anyway, time to get my ducks back in a row here in chilly Michigan and reconnect with the outside world. Watched the news last night and shocking all the major stuff going on right now. I can feel a current events post coming up as it's hard to keep all of my thoughts on whats going on here in the U.S. and around the world inside!
At least if I go there, you know I'm not thinking about cancer which to me is a good thing :)
Taking it day by day, hour by hour, minute by minute, breath by breath...
Chris
3 comments:
Chris,
Dont let your dismal doctor ever take away your hope! When I was diagnosed the doctor told me I had 3 to 5 years and I am here 8 and 1/2 years later!!! I proved them wrong.
One of the worst things with lymphoma is choosing what to do. There are many treatment options and trials but it is almost left to the patient to decide what to do and that is so difficult.
From reading your posts you seem to be feeling relatively well and enjoying your life. Your plan to stay on the RAD001 sounds like a good plan!! I hope T-cells are ready when you need them.
Can not believe the problems with your mom's scan...that is unacceptable!!! ugghhh!!
Sending positive thoughts and prayers to you and your family!
Stay Strong and Always chose Hope!
Donna
Hi again,
Just wanted to get this message to you but didnt have an email so sending it through your blog. After reading your post I was having lunch with my good friend who is an infusion nurse and I was telling her about your situation and how the doctor was so dismal. She wanted me to let you know that she has treated patients for 25 years and have seen many like you do well. She said there are many many new drugs and always hope. She also wanted me to mention to you the drug Brentuximab. She has a patient who has had refractory Hodgkins and nothing has worked for him and over the past month he has received Brentuximab and has shown remarkable improvement. she says it is amazing! I know you are currently in a trial that is working for you but felt I should just mention it to you. You may have researched this drug already.
I hope the trial you are in continues to work and things with you and your families health get better.
I was diagnosed with follicualr Non-Hodgkins in 2007 (non-curable) and was told 3 to 5 years but still hear 8 and 1/2 years later.
Stay Strong!!! Better days are ahead!!
Donna
Donna, Chris has had Brentuximab. But that's what I'd like to pass along to Chris. There is always a retreat trial. Still, even Dr. O has had the same discussion with me. Ironically, I posed the exact same question to him, "What would you do?" He said that he honestly didn't know. I appreciated that answer. I keep thinking the expression Alison always says, "When doctors say there aren't a lot of options out there, they really mean they're out of ideas." So, Chris, just so you know, I'm sort of grappling with the same issue and promise I'll be available to continue any kind of discussion.
Michael Herlehy
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