Call from transplant coordinator

[Anne]

I was diagnosed with MDS-RARS about 2 years ago. I have been on Neupogen and Aranesp without result. Now dependent on transfusion of red cells about once/month. Today I got a call from the transplant coordinator, an unrelated donor for a SCT has been found. I will meet with the transplant team next week. I know it is a risky procedure, but I think it is a chance I have to take. Can any of you help me with questions I should ask the doctors ? And opinions on SCT, both for and against ?

Anne

[ww5]

Anne,

My husband(70) has been recently diagnosed with MDS-RARS and is also on Neupogen and Procrit. The Neupogen has has helped a little bit but not the Procrit. He is getting Tx every 2-3 weeks.

I know there are different variations of MDS-RARS, but his hemotologist at Scripps in San Diego said that their have been very positive results in the Revlimid trials for his condition. He told him last week it should be available inside 6 months so he must feel it will be approved by the FDA on October 7.

Judy

[Neil]

Hi Anne,
The most important factors in an SCT are the donor match and the number of successful SCTs the transplant team has had with 56 year old patients with RARS.
You must know:
How many SCTs have they done?
How many were successful? How many after 5 yeqars?
How many on patients 56 yrs old?
How many were successful on patients that were 56?
How many were successful after 5 years?
How many were on patients with RARS? How many successful/after 5 years?
What is their experience with handling GVHD?
Advancements with SCTs over the last year have been very encouraging. Much better results.
The key seems to be in the amount of experience the team has with patients with like characteristics. You are interested on their results with leukemia and lymphoma patients but the real concern is with 56 year olds with RARS.
40 year old patients have much better odds tha 70 year old patients. WHere do you fit in.
If they cant answer these questions to your satisfaction you might have to look for someone who can.
You must have a team that has a very godd success rate beyond 5 years. Might be difficult to find.
Neil

[Neil]

Hi Judy,
Not all patients respond to Procrit. Did they check his erythropoietin and iron levels before putting him on it?
If EPO is normal to high Procrit may not help. If iron is low a supplement might help. Procrit needs iron to work.
Some patients who did not respond to Procrit did better on Aranesp. The drug is much the same but has some variations. Also has a longer interval between shots.
Might want to kick it around with his docs.
Neil

[ww5]

Neil,

Thank you for the information and the tip on the EPO and iron. I will have my husband check for those values.

Bill’s been diagnosed for such a short time that we are still trying to figure all this out and get some of the chaos organized. He was originally diagnosed with a compromised immune system and COPD because he was having trouble breathing and getting infections all the time–it’s amazing how much better you breathe with some red blood cells!

It was after we changed to another pulmonologist who suspected MDS that we were sent to the hemotologist.

After 1-1/2 years (though we suspect longer), we have a diagnosis. I plan to start a thread with a list of questions for the group.

Thanks for everyone’s active participation and caring. It is so refreshing to find such a great group of people.

Judy

[Christina]

anne,

What % match do they have for you? 9/10, 10/10?

Chris

[Anne]

Hello Chris.

I have a 10/10 match. My transplant day is 11. november. I will be admitted into the hospital 3. nov. The conditioning will be a phase II clinical trial especially designed for patients older than 55, which otherwise is the limit for a MUD transplant here in Finland.

Regards

Anne

[shirlsgirl]

Hi Anne,

A 10/10 match! That’s awesome! Wishing you a smooth road to recovery. Will be sending many positive thoughts and prayers your way.

Take care,

Jody

[Author]

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