[SimonChai]

Hi, MIke. I don’t think I can consider myself cured this early in the game, but I had a successful double-cord blood transplant for MDS in April 2006. I’ve got chronic GVH of the gut but so far, my disease is in remission. I’m able to work 3/4 time and feel that life, while challenging, is good! I am worried about relapse and long-term side-effects, of course, but I’m very, very grateful for this second chance. So far, so good. Please let me know if you have any specific questions. All my best to you.

[SimonChai]

Hi, Sandy. I had induction chemo last January. I was not in a sterile environment. I was at the University of WA Hospital in Seattle–not allowed to leave the building but allowed visitors. I didn’t have a fever during induction chemo and I’m not aware of any special precautions against infections…

[SimonChai]

Hi, Loretta; You’re doing well to send such coherent emails during intense chemo treatment. I know I wasn’t able to!

I am thinking of you and wishing you the best.

Simon C.

[SimonChai]

Hi, Loretta. Thanks so much for letting us know how you’re doing. You sound good! I know how tough it is. You have a great attitude.

I looked back through the old messages but can’t tell–are you having a transplant when the chemo is over? Wondering how long you’ll be there.

Stay well and let us know how things progress.

All my best for a healthy new year for you,

[SimonChai]

Hi, KWJ:

I am so sorry about your dad.

As someone who loves to travel but hasn’t been able to do much since my transplant in April, I wanted to throw in my two cents about your question.

I think it sounds great to go somewhere warm where you have family. You have to assess the risk, of couse, but you can do things to minimize the problems.

What I did when flying back from Seattle to DC after my transplant was 1) used extra miles to fly first class where one has more space to get away from sneezing, infectious travelers 2) booked my flights for the least-busy times of the week; 3) boarded plane last — and deplaned first– to keep away from crowds; 4) used lots of sanitizer and 5) never drank any nonbottled water on a plane. There are probably other precautions you can take–maybe other folks can chime in. I was extremely nervous about flying but did not get sick. Oh, and even though Fred Hutch docs said to forget a mask, I did use one part of the time

Hope your dad gets to go to AZ.

Best,
Simon

[SimonChai]

Hi, Susan. I took Vidaza this past winter for several months and never had any hair loss. I had a bit of nausea but nowhere near as bad as I’ve had with other drugs. I had minimal side effects with the drug and it definitely helped get my blast count down. However, as a disclaimer, I should say that I was in a special study and taking Vidaza along with Enbrel (sp?), a drug that I believe is normally used for rheumatoid arthritis. I don’t know how the combination of drugs compares with how Vidaza would have affected me on its own.

[SimonChai]

Thanks everyone for the warm welcome back!!
Loretta, you asked how old I am–54.

Best,
Simon

[SimonChai]

Tandy: All MDS patients are supposedly different, but I had a very good result from just one round of Vidaza. However, I took it along with Enbrel, the drug usually used for rheumatoid arthritis, as part of a clinical trial at Fred Hutchison Cancer Research Center. My counts never actually dropped the way the doctors thought they might.

[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.

[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.

[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

[SimonChai]

Hi, everyone. Does anyone have any info or experience with trials combining Azacitidine with Etanercept? My doctors are recommending it for me. I know there was a brief discussion about this in January 05 on this forum but wonder if anyone’s had any additional experience. Thanks, as always.

[SimonChai]

Hi, Amya: I’m leaving for Seattle for a transplant on Monday so I can’t tell you my story yet, but I have found BMT-Talk helpful. Do you know the listserve?

Bone Marrow Transplant list (BMT-Talk)

E-mail list for those who have had or are facing Bone Marrow Transplants (BMT) or Peripheral Stem Cell Transplants (PSCT or PSCR). To subscribe:

   
e-mail:
listserv@listserv.acor.org

   
subject:
none (or add a dash if your mail program requires it)

   
message:
subscribe bmt-talk your first and last name

If you have a signature, delete it.

You can also use the ACOR web interface for the BMT-TALK list.

[SimonChai]

Thanks , Don and Sarah. My local doctor seems to favor my waiting to go to Hutch, but I’m not sure I should wait that long.

We’re doing another bone marrow biopsy tomorrow to find out exactly how urgent things are and if I need to try to get in to U of Minnesota or somewhere else like Robert Wood Johnson.

I’m also having my first transfusion tomorrow. Yikes. Thank you both for your info and kind wishes.

[Author]

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