So I met with Dr. Shustov today and unfortunately things didn't go as I would have liked them to...
It looks like my cancer may be back as I have two enlarged nodes (although small) in my retrocrural space on my right side. In other words, right around the middle of my back on the right side where I suspected there was an issue.
Needless to say, I'm devastated. To confirm what he thinks is refractory cancer, Dr. Shustov has ordered a PET scan tomorrow. I asked him the odds of this being an infection or some other type of inflammation and he said 1 in a million, obviously not good...
After shedding a bucket load of tears, I'm ready to dig my heals in again and go to the next step. I have a lot of things to figure out. There is a current clinical trial that is recruiting at the moment for a new drug called SGN-35. I don't think I'm going to stay out here in Seattle as I want to be close to my family during this. My two options at this point are Ohio State and Loyola of Chicago. I would have to drive to one of these locations once a week for 3 weeks and then have a week off.
I'll post more after my PET tomorrow (most likely Saturday evening).
Thanks for the support :)
6 comments:
Hi Chris...I am so sorry to hear about this setback. I hope the clinical trial will bring you better results.You are such an inspiration. Oh..Chili is one cute dog!
Wendy
Chris, my heart is breaking, with yours, i'm sure.
I have one of my classes this weekend -- all weekend. But, I'm giving you a call on Monday...
I am so, so, so deeply sorry.
Words do not do justice at this point in time.
Just know, I am here.
Every step of the way...
All my Love,
Bekah
:(
Hey Chris,
This is indeed crappy news, hoping the pet comes out with better results. However if the hodge is back I believe the introduction of new targeted therapies can manage if not cure the HL.
My wife Marsha P is on SGN-35 and feels better than she has in years. I'm not sure if SGN is the long term cure but it has given her amazing relief for the couple of months she's been on it.
If you feel like coming to DC for a consult with DR. Chesson at Georgetown we would be happy to put you up and show you the ropes.
Best of luck
Bob Williams
buffalobob@gmail.com
Oh, Chris - exactly what we hoped we wouldn't read :0(
You have options and sounds like you're getting good guidance - not to mention the emotional support from a myriad of forum friends.
You will find the strength to do whatever you need to do to control this beast.........thinking of you, as always, Chris.........Vx
Hi Chris,
I don't think I've ever left a comment on your site but I've followed it for a while now. I'm very sorry to hear that your transplants were not successful :(
My husband Bill is 35 and is also in a similar situation (I'm "Life32" on lymphoma.com) and it has been almost 2 years since we learned that his transplant didn't work and he is doing really well. Life after a failed transplant can go well for many people and I think that the doctor's scare us into thinking that there aren't too many options available aside from the allo transplant.
When Bill relapsed after the transplant, he did radiation therapy to the site and so far so good. The disease is now stable. When it comes up again, we will most likely pursue SGN-35 or another clinical trial that our doctor recommends.
Good Luck and stay positive.
Cathy Nicholov
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