doctor called today

[Lolam]

Dr. Deeg called my doctor and they want to proceed with the typing for a match for BMT!

I am so surprised!!! My doctor refused to talk to me on the phone about a single “but…”, “so…” He just said “Get me your sister’s address, etc. today and we will send the forms to her.” I don’t have a clue why they proceeded with the recommendation, as Dr. Deeg did not seem to be leaning that way when we left his office.

So I decided to take things into my own hands and called this contact at Hutch and told her I want the notes from that meeting!! I want to know how he came to change his mind.

My doctor said they are Moving into uncharted waters…..Not sure I want to be in THAT boat. I never even learned to swim in my 59 years!!

My question is: “If my sister is not a match, and they try my double cousins and unrelated donors, does that mean that my chances are less and less effective the further I get from my sister?” Or are all matches created equal?

Thank you for all your responses the other day. I hang on every word that comes out of your mouths. I am SO GLAD to know you

[shirlsgirl]

Yay Lola!!! Nice to hear some positive news. Should be interesting reading your doctor’s notes too….great idea! So often my mom is disappointed with the lack of details given to her by one of her hematologists. She asks questions but is given very short answers.

I wish you success on finding a match. I’m sorry I am not very knowledgable when it comes to the BMT process.

Hugs back atcha!!! Jody

[DonUK]

Hi Lola – please let me caveat this in that I am no expert, but my better half has just gone through a BMT so here’s my two-penneth (yes I’m from the UK) worth.

The matching process is based on what are called Human Leukocyte Antigens (HLA’s). There are lots and lots of these (in the hundreds I believe), but there are 6 important ones. (That is why you might see “6 out of 6 match” type comments).

These are inherited from your parents (no surprise), but due to the combinations there is a 25-35% chance of a sibling match.

Difficult to word the next bit but I hope it makes sense.

If you were to pick two individuals (one of which was your sibling), then the odds would be greatly stacked in favour of the sibling being a match rather than the unrelated individual.

HOWEVER, if you were to pick a sibling and the whole of the worldwide marrow registry (I think there are about 8-10 million people registered most of whom are in the US), then the odds may well be higher of finding a match on the registry than the 25-25% chance of the sibling matching.

I hope this makes sense. If I can relate my personal experience, Karen’s sister (her only sibling) was only a “half match” which I assume means only 3 of the 6 HLA’s matched. However we found a 6-6 match on the UK donor register (of which there are “only” around 0.5 million people).

So….don’t get too worked up if you don’t have a sibling match, the registries may well have a match.

As stated earlier – I’m not a haemotologist, this is only what I have learned in the last year or so. I’m sure there are others on the forum who will either back up or correct what I have said.

Guys & Gals ?

[Suzanne]

Lola, I have found more then once that the directions advised were different then I thought it would be after the doctors all looked into information and pooled their thoughts. What a wonderful thing to have a “brain trust” of so many doctors looking at your case. Because our disease is so rare even with out the secondary aspect we are often in “uncharted waters”. but uncharted is better then just giving up. They learn new things all the time and my experience is that they don’t advise doing something they don’t think has a reasonable chance of working. People react so individually that it is hard for Dr’s to predict but mine always gave me an opinion of a % chace that something would work. Things sure sound better today. As said in the prior message don’t give up if the sibling does not match. you are young enough for the marrow pool unless your secondary status causes a problem there., I was not. Good luck. Hope your sister is a match. It will make things simpler.

[geebeebee]

Hi Lola,

Best of luck with your sister, and if not there, on the donor list. I have been told it’s a 1 in 4 chance as well, but Mom had three siblings tested and two matched, so you never can tell.

Keep us posted, and we’re all rooting for you!

Greg

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