Thursday, September 16, 2010

What Will Be The Plan?

Dori is in the cancer infusion clinic, receiving platelets, which have dropped significantly after last week's chemo. Earlier this morning, we visited with Dr. Jagasia to discuss how the plan is looking. The discussion was very informative and has us talking about the recent past and the future.

The doctors are basically thinking of a few options. Highest on Dr. Jagasia's list is doing a second transplant (stem cell this time, not bone marrow) with a preparatory infusion of thymoglobulin, a relatively new chemo drug they are beginning to administer more effectively. A donor lymphocyte infusion is also being seriously discussed. Dr. Jagasia said he will recommend using Dori's original donor, Hans, who is apparently available for the transplant or DLI. Other team doctors are currently advocating leaving things as they are, while maybe one cites data that this disease known as AML is "incurable" (pause for "hogwash").

Dr. Jagasia said Dori is clearly in "unchartered territory." He said Vanderbilt has not done a second transplant here on an AML patient like Dori and little scientific data is available to give them guidance to a certain best course. Dori's complex cytogenetics also has them a bit befuddled, but Dr. Jagasia, who seems clearly inspired by Dori, said he is hopeful. Her relapse occurred well after the first transplant, and her functions (liver, heart, etc.) remain good.

He mentioned we could do a second transplant in Houston (MD Anderson) or Seattle (Fred Hutchinson Cancer Research Center). We aren't leaning that way; we like the team at Vanderbilt, and it's close to home. We likely will ask Dr. Jagasia to present Dori's case not only to his team here at Vanderbilt, which he will do again next week, but also to the team at "the Hutch." Then we'll follow the chosen plan here at Vanderbilt. Dori is probably seven to eight weeks out from a transplant or the DLI.

Dori commented she knows she's not going to live to 80 and she might just resolve to getting another few years, to which Dr. Jagasia said, "I don't believe that's necessarily true. There is hope." Amen, Dr. J.

We were surprised to learn Dori's graft versus host disease (GVHD) in July was Stage 3 and 4. Stage 1 and 2 are easily manageable, while 3 and 4 are life threatening. They don't want 3 and 4 again, and neither do we. Purple, hot, peeling skin isn't welcome again on my girl. The main risks going forward are too much GVHD and infections.

I asked Dori today if she believes in miracles. She said yes, she had been before, but with a grain of salt. Today, she said she absolutely believes in them. Listening to today's clinical view, I realized how fortunate Dori is to be here right here right now. I asked, "Why is it that we have 'Internet friends' like PJ, Ann, Ronni, Lea and others ... people we've never met who are incredible survivors against the odds, just like you?" How do you explain all this?

There are no easy answers. For doctors, for my family, for anyone. The doctors can only do the best with what they know. Our family can only face this with dignity and honesty, as Dori continues to do. Our extensive support group can only pray for the outcome we all want.

6 comments:

lcreekmo said...

My prayers are with you all. I can already tell that you are approaching your entire lives with wisdom and purpose, and I know you will make the best decisions about this for all of you.

Know that you are all surrounded by our prayers and love, whatever the course may be!

PJ said...

All of us who've had 2 transplants believe in miracles! Why wouldn't we?!

Craig said...

Jim and Dori, you are beyond amazing. This board is the most amazing thing I have ever found on the internet. I knew Dori in high school. Jim, you my friend have inspired me in many ways including running a marathon this year- something I would have never done without your inspiration. I keep an inspirational quote from you with me always that I use when the going gets tough. May God bless you both. Everytime I think I have something rough going on my life I go to this blog and realize you two are very very amazing and that I need to suck it up because of how tough you two are. Craig in Cincinnati.

Ronni Gordon said...

I'm sorry, I'm confused.

I thought Hans had kicked in and Dori was 97 percent donor and in remission. I read back to see if I missed something, but didn't see anything.

Obviously you should tune out anyone who says it's incurable. (Sounds like you already did.) I remember my doctor saying to me when I relapsed, "Leukemia is curable."

I've had 4 transplants (3 if you don't count the auto) and I'm still here to talk (and blog) about it.

Ann said...

Having done this little dance twice as well, I can firmly say that my life is peppered with miracles.

Jim said...

Ronni, Dori is 99.5% donor as of July 28. We were also a little confused until recently. Jim