Trip to the Hutch

[Bill and Mary]

I had my first trip to the Hutch on the 25th to see if I was a good candidate for a transplant and to find out more of the process.

I am very impressed with the Hutch! Wow, actually talking to folks who know what we are going through. What we learned was very sobering and has lead me to make a decision 180 degrees away from what I thought it would be. I have decided to go for a transplant.

It will be a full blown transplant because the Hutch has found that mini transplants do not succeed well with MDS patients. When it will be is up in the air because of all the insurance appovals that are needed. The darn things cost 256-400,000!!!

Two numbers make it almost a no brainer for me. The Dr. rated me an Intermediate 1 on the IPSS scale and said that the median survival is 3.5 years and that 25% go to AML. (I know that Neil is a long term survivor so he must be one of the exceptions to the stats.) The other is that, based on the information Kaiser sent from my BMB, they found over 3,000 possible matches on the initial run. This of course will drop as the run is refined.

The Hutch is in a class by itself. Those folks know what MDS is about. The staff and other patients were exceedingly helpful and friendly. The atmosphere is low key and supportive, sort of like a warm cloak on a chilly day.

I can’t say I’m looking forward to the procedure, it scares me a lot, but I think it needs to be done and the Hutch is where it should be done.

Bill

[Donna]

That’s great news Bill!

Isn’t it a good feeling when you know you’ve found the right place. Sounds like they have a wonderful team there. I’m sure when the time comes they’ll be able to take your fear away and make the transplant as comfortable as they can.

Donna

[Karenj]

Bill,

Was this your first consultation with Hutch? Did you have to go through any tests while you were there? Why did they discourage you about the mini-transplant?

Do you know what preconditioning they would give you for the full transplant? I’ve heard alot of good things about the Hutch. I’m glad you came back with such feeling so positive. Thank you. Karen

[sarah]

Bill , so glad your appointment went well. We felt the same way with our first trip to the Hutch. Thats where we want to be also if we find a match. I am glad you are happy with your decision. You are fortunate. Hutch has been searching 3 years for my husband for a match, nothing has even come close. He has a very unusual combination of antigens. We keep hoping and praying to find that one special match. Best of luck to you.
Sarah

[Jimbob]

Bill, now that you decided to have a SCT done at the Hutch, take advantage of all they have to offer. They social seervices team is likely to have a wide selection of books, pamphlets, tapes and CDs to fill in the gaps you may have in your knowledge. I als suggest you have phye therapy lined up for after your release to prevent loss of muscle tone and endurance.
If your insurance company initially says no, appeal asap. This is not experimental but standardtreatment.
btw, my insurance co said it would probably run between $600-800K. I know they have exceeded that due to complictions but ther is no limit on my coverage, thank God.
Good luck to you. Jim

[Marsha]

Bill,

I knew you would be happy with Hutch. wow 3,000 on initial search I had only 17, but it only takes one and I got it. Hopefully, things will go smoothly and not too many rough edges but trust me it only lasts for a little while. I have even forgotten some of what I went thru in the hospital. Best of luck and prayers are with you

[gemloyear]

What does Hutch stand for and where is it located?It sounds like a wonderful place. Good luck with the ins. and hope they find a match for you. Ellie

[sarah]

Fred Hutchinson Cancer Center in Seattle, WA

[Davea]

Bill,sounds like you have an excellent chance at finding that perfect match. After almost 2 yrs. they’ve finally found a match that will work for me! If everything goes as planned my transplant will happen in late March or early April. Keep us up to date on your progress and I’m praying for nothing but good results for you. Did the Hutch give you any current success rates for BMT on MDS patients? Just curious to compare them with what my transplant Dr. told me. Dave A

[Bill and Mary]

Karen, This was my first visit. The Dr., Dr. Radich, said that they are not doing mini’s on MDS. They found that the minis work best for folks that have had previous chemo for leukemic cancers. These folks’ immune systems have already been pretty well destroyed. The course of pre-treatment and Total Body Irradiation finishes the job. When they infuse the smaller doses of stem cells, they are able to engraft.

With straight MDS patients, we have not had the history of chemo. Our immune systems, while compromised, still have enough oomph to kill off the transplant cells. In addition, and he said unexpected, they found that mini patients also had almost the same incidence of GVHD (40-50%).
There are othe negatives as well but I did not really get them straignt in my mind.

As far as preconditioning goes, there are 4 days of busulfan. They monitor it closely to minimize its more negative aspects. Then there are 2 days of Cytocine. Then a day of rest and then your second birthday.

Dave, The Dr said that their success rate for 5 years out for Intermediate 1 is 50-60%. He said that most deaths from the transplant and MDS occur in the first 2 years. If you survice 3 years, you are MDS free. Any deaths from 3-5 years are considered to be from other causes, though I’m not sure it makes any difference to the recipient.

Jimbob, I not expecting grief from my insurance. They have been very good in the past. I think it will be more an issue of waiting for all the approvals. Still it is a gosh awful amount of money!

[alexandra7]

Well from what I can see it’s a good news .Don’t be scared as you’ve said it needs to be done . Good for you. Good luck with everything . God be with you!!! Let us know how it works out!!! Alexa

[Terri]

Good News, Continued prayers will be with you, please keep us posted. It is nice to have some encouraging news.

[Karenj]

Bill,

Thank you for answering my questions. Initial run of 3000 possible matches is great. I hope they find a perfect match for you real soon. Please keep us updated.. Thanks again.. Karen

[margota1]

Hi All, I’ve been reviewing info on Hutch as my husband doctor @ UAB told us yesterday that he wanted to send us there. Lee has progressed from less than 5 blast to 11%. He has also developed another chromosome defect (16) and he has moved from Low to High risk. His sister is a perfect match but we know that isn’t the only thing that needs to be matched. I’m concerned because of his age but he tells us that this is being done more and more on folks who are over 65 and are in good shape (he is right now but I don’t know how long this will last). Anyone out there got anything you want to share about this?

[Andy A.]

Hi Nana! I’m on board! I will be visiting periodically. Love, AA

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