Trip to the Hutch

[lindajo]

Good Luck, following your insticts and being comfortable with where you are and the decision you have made is half the battle.

We will all pray for you. Keep us posted. Lindajo

[margota1]

Thank you so much. Just when we had gotten use to the idea of supportive care these changes occur. I read and study and pray that we will know the answer when we see it. For 2 1/2 yrs. we were told that Lee just wasn’t a canidate and now all of a sudden all that changed. thanks again, margot

[SimonChai]

Hi, all. I just wanted to say that I’m at Fred Hutchinson now–about to have a double cord blood transplant for MDS-RAEB, with complex cytogenics.

If anyone has had a cord blood transplant for MDS, I’d love to hear from you. And if I can answer any questions for anyone considering this treatment, I’d be happy to–although I don’t understand as much as I should!

Best to everyone.

Simon Chaitowitz
simon.chaitowitz@gmail.com

[patti]

Ms. Simon,

All the best to you as you start through this process. Best wishes for a good new “birthday!”

Patti

[SimonChai]

Thanks much, Patti!

I couldn’t be more scared but after six months of trying various alternative approaches to no avail, this seems the best solution.

[sarah]

Simon, have you had the induction chemo yet? When is your transplant? Hope things go well for you!

[bobbie]

Hi,

I have an appointment at the Hutchinson Center on April 6 with Dr. Deeg. I saw him in 2002 and was diagnosed with MDS-RA, I think the IPSS score was, oh, can’t remember, something about 3-5 year survival (statistically, which I ignored).

My reason to visit is: I’ve progressed in terms of hypoplastic bone marrow in those four years and my local hematologist says I have secondary(mild) aplastic anemia and I also have several autoimmune conditions that probably caused the bone marrow suppression (was on Cytoxan for several years for vasculitic neuropathy).

I have been told they’ve exhausted treatment options for immune suppressant drugs to halt the progression of the neuropathy and vasculitis and my blood counts are consistently low (even with IV iron dextran, I can get my RBC up to 11.0, about 30%)which I’ll take. But my WBC is consistently around 1000-1500 and my platelets stay around 60,000. All ok numbers but I just turned 50 and I know they probably won’t get better on their own. The main thing is my symptoms are worsening, neuropathy in both extremities and legs and arms, autonomic neuropathy (bladder, hearing), bleeding ulcers due to vasculitis, swollen lymph nodes, and decreased kidney function. Yipes.

So, I’m thinking of discussing autologous transplant or possibly cord blood.

Has anyone here felt that the Hutch were responsive in regards to a patient initiating that kind of treatment? I know stem cell/autologous and even allo tranplants are being done more often for autoimmune disorders.

Sorry for the long post and if I hijacked this one . Compared to what everyone else is going through on this forum, I feel I’m in ok shape but I also know things can progress quickly too.

Thanks for any thoughts from the collective wisdom of the board.

[SimonChai]

Hi, Sarah. Nice to hear from you. Actually, I did induction chemo in January but it didn’t get my blast counts low enough. We tried Vidaza next and it worked perfectly.

I’m probably going into the hospital on Saturday and will hopefully have the transplant on or about the 24th. Thanks so much for the good wishes–they mean a lot.

[margota1]

Hi All,
I made the call to the intake center on Tuesday afternoon around 2 PM CST and gave all Lee’s current information. The doctor called me back within 1 1/2 hours. She was sooooooooo easy to talk with as I gave her Lee’s history. My news is that Hutch now has protocals for MDS patients over 65 who have a match. The number one step is that the patient have 5 or fewer blast. That is where we were for 2 1/2 yrs. but now he is at 11%. We will re-do a BMB on Monday to see how aggresive the MDS is. She reco. that our UAB doctor start him on some chemo to get the blast down and then call her and get to Seattle STAT. I was so impressed and I know that out UAB doc will feel the same way. Anyway, here we go again on Monday. I just cont. to pray for those good research projects. We have come so far in the 2 1/2 yrs. I’ve learned about MDS. God Bless us all!

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