traveling to Minnesota

[sarah]

Sandy, we went to Minnesota because they found 2 cord blood (4 of 6)matches for Charlie. The Hutch has been searching for bone marrow match over 3 years with no success. Hutch actually referred us to Minnesota because of their experience in adult double cord blood. Dr was Arne Slungaard. My understanding of Angel Flight is if you do not have the resources to pay. They sent home with us a packet on housing. Hope to get into one of 22 apartments close by the hospital used for transplant patients and family. If I remember its around $1100.00 a month, does not include utilities. Sandy how low are Mikes counts?

[Jimbob]

Sarah,
Talk with the social services people or patient advcocate to see if they can act on your behalf to get BCBS to commit to coverage. they might also have suggestions for other sources of funds. It is a big step Charlie and you are taking but it sounds like it is in the right direction. You will be in our prayers.
Jim

[sarah]

Anyone familiar with going through cord blood transplant when the marrow has become fibrous? Dr states engraftment will be difficult. We are very worried about proceeding, but feel like we should.

[Jimbob]

Sarah,
My doctors told me that the bone marrow had become fibrous becasue I had waited and the longer I waited the worse it would get. It was one of the reasons that I decided to get a stem cell transplant as soon as possible. It engrafted quickly and I had only minor GVHD.
Jim

[Sandy L]

Does the stem cell and the cord blood transplant do the same thing? Is one better than then other? Can someone explain this further?

[Neil]

Hi Sandy,
SCT and cord blood transplants would hopefully replace the abnormal cells in a patient.
Two different approaches to resolve a common problem.
Cord blood transplants are a newer procedure. Not as many performed at this point. The cord blood is very rich in stem cells. It is believed they may have a higher success rate. But the patient still needs a match. It might be possible a patient could do better with a matched unrelated donor (MUD) than with a SCT.
There are many people who are freezing a childs cord blood to have it available in the event of a future problem with that child or a sibling.

[Luke and Margaret]

My heart goes out to you both. God speed in your decision making.
Margaret

[Sandy L]

Neil

I still need some clarification.

If you had a perfect unrelated donor for a stem cell transplant and a 5/6 unrelated donor for a cord blood transplant – which would be a better choice? Does someone do the cord blood transplant because they can not find a donor that is a high enough match for a SCT?

Sarah and Charlie – I wish you luck and know that we are all cheering you on. I do hope that you can keep us posted on Charlie’s progress if you do decide to go to Minnesota. I think of your often and will continue to pray for Charlie.

[shirlsgirl]

Hi Sarah and Charlie,

My mom and I are also cheering you on. Best of luck to you, we look forward to hearing positive news….sending positive thoughts and prayers your way.

Take care,

Jody

[Neil]

Hi Sandy,
Would always go for the perfect match.
A cord blood transplant is actually a SCT—using cord blood.
Much to think about. The success rate is very important. Unfortunately there arent many (if any)patients out there with cord blood transplants that are post 5 years

[Sandy L]

Hi Neil,

I have found out that you are right about there not being many transplants post 5 years. I have asked for a specific list of centers that have done the proceedure with Mike’s age and disease classification and the numbers are very low. I think I now need to broaden the range so that I can get a better idea of how many each center does and how good the success rate is for Mike’s classification. From the list they gave me the numbers were 2 , 1 and 0 and most did not have any survival rate past 2 years.

[Neil]

Hi Sandy,
If you have not done so, get info from M D Anderson, Fred Hutchinson and the NIH ( If accepted NIH procedures are paid by govt).
They probably have the most MDS related experience. Moffit in Tampa shows much progress.
Be sure the stats you get are restricted to MDS patients (preferably with RAEB).
Not much point in looking at transplant info on patients with other diseases.
Survival after 5 years is a significant stat.

[Suzanne]

Isn’t the cord blood stem cell transplant very new and unlikely to have survivial statistics more then a year or soand not many statistics at that because they weren’t doing that proceedure until recently?

[Terri]

Sarah, I Hope you and Charlie find the guideance you need in making this very important decision. Please know you continue to be in my thoughts and prayers.

[Author]

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