Lori,
That's an amazing number of matches. They will narrow it a bit more to make sure certain markers match.
Since I always have a backup plan, I will answer your second question.
Fact, I did not have a match
Fact, my sister was a 7/10 match
Fact, I had a haploid entices transplant, all marrow, serious pre-treatment protocol. I have passed the 10 month mark.

I am rejoicing in this good news for you.
Peace,
Andrea

Hi Lori.
I think 19 10/10 matches is a great news. Of course there could be other pitfalls, but I believe the odds are on your side. Male donor in 20's would be as good as you could wish for. My donor was my sister, 10/10, but she was 52 and had 2 kids. Age of the donor, female to male donation and having children, increase the risks of problems and likeliness of GvHD. It was specifically spelled out in a recent lecture on GvHD I've attended. Something about having different anti-bodies. Sure enough I have chronic GvHD. Unfortunately my sis thinks it is her fault, no matter how much I keep telling her otherwise.
There is more to successful matching than those 10 markers, but I do not know if doctors actually go much further than that as it is usually slim picking when it comes to available donors.
As for non-ideal matches, I do not know enough about it and suspect that there is more to it than just a simple number ratio.

I'll pray that Keir has many options to choose from.
Boris

Lori that is amazing. Such great news.

19 matches and all young people is tremendous. You are your medical team should be encouraged.

Boris,

Interesting, my sister has to kids and was my donor as well and 50, but I was told at (Sloan K) That sister to brother matches are as good as it gets sibling wise, and much better results than brother to brother or brother, oddly. I guess there is new information everywhere.

What chronic GVHD do you have? How far out from transplant are you.

Thanks in advance.

Ed

Lori,
That is super news! Yes, 19 potential young donors is good news. They will have to narrow it down further but what a wonderful start. Thank you for sharing the good news, I will pass on the movie though. I have never been able to sit through the whole Shining, it is too creepy. Have fun!
Take Care,
Suzanne

Hi Edie.
The info did not specified related or non-related donor, so there could be exceptions. Most of this I've learned after the transplant as I did not want to be effected by negative information. My onc did ask how many kids my sister had almost as a afterthought at one or our pre-transplant meetings, without commenting on it. Later I've read somewhere in "recommended reading" that female to male donation is less successful (did not specified relations). So when the lecturer listed it I was not surprised.

I had the transplant 9 months ago. My GvHD started on skin about 2-3 months after transplant. At first just a upper part of my back (small brown/red blotches), now it is almost all over my body, but not much on face. Does not itch or hurt. Later my "dryish" mouth got completely dry, have some sore patches inside the mouth, few small cavities showed up very fast. My liver might have been lightly affected, according to my onc. Some joints that did not ache before hurt quite badly now. The most annoying are my eyes. They turned extremely dry around 120 days after transplant. Can be terribly painful sometimes and no eye drops help. Left eye vision got pretty bad and fluctuates between optically correctable and non-correctable. Luckily my right eye works much better.
It is no fun, but I've got used to some of this. Learned to eat certain way so I can eat bigger variety of foods and not to choke all the time. Skin does not hurt and who cares how it looks. Pain in joints ... oh well... I'm going to be fitted with Jupiter lenses - used for extremely dry eyes, to see if that might help with eyes.
Still I'm able to work full time right now, using PC. It is exhausting, but doable and mentally very helpful.

Cheers
Boris

Lori -- it only takes one -- if there are 19 to choose from, then the chances of getting one perfect 10/10 match is excellent. I have also heard that a near relative might not be as good as an unrelated match -- they call them MUDs -- Matches from Unrelated Donors. Perhaps others can comment on the reason for this. So, as I see it, this is the best possible situation. Congratulations!!! -- dave

Lori, this is great news and I'm sure at least one of these donors will come through. I have a good feeling about this.

I also think they would only use a 7/10 haplo when there was not a better MUD out there. Haplos are tricky, they take longer to be accepted into your system, they're more likely to give you GVH problems. These are not insurmountable problems as Andrea's success shows but they will try to avoid dealing with them if at all possible.

My donor was also my sister, late 40's, four beautiful children. I recently asked my doctor about the whole female to male donor, children, age thing. She said a sibling donor is a sibling donor. In other words, sibling donors are statistically more successful, so don't ask questions - I'm starting to understand her answers - it's like reading code.

Now keep in mind the expansion of the registries and advances in HLA typing have made transplants using MUDs much better and in many cases comparable to a sibling donor. But I'll go with MSK and hope their info on sister to brother success rates is true.

Lori,

19 is amazing!
In my case, one sibling was not a match, the other is 5/10
And there is one person in the whole worldwide registry who's a match for me 10/10 (and wasn't available at the time transplant was considered for me...)

A match of less than 9/10 is usually very tricky and used only when there's no other option. There's also cord blood, etc.

I was told that the success statistics for 10/10 MUD are very very close to those of a 10/10 sibling.

And 19 is a HUGE number.

As a Jew of Ashkenazi background (eastern european grandparents), statistically my statistical theoretical chances of finding a perfect match are over 90% and yet, apparently my HLA is rare, and there was only this one unavailable person... So although I didn't need a transplant (and it could have gone the other way too), I still envy those with several perfect matches. This is great news!

Enjoy "The Shining"! Great movie :)

Abby

We are home. Keir goes to clinic on Thursday and Monday, but at least nothing tomorrow, Friday, or the weekend. He feels well and is eating well. Very uneventful so far - the doctor said, on the way out, "Remember - treat yourself like glass." So he is taking that pretty seriously and seeing no one but immediate non-sick in any way family and staying home except for walks in the fresh air. It's hard, but the Black Hawks are playing tonight and there are movies to stream and books to read. Ed, I recall the transplant doctor saying that with siblings they seem to prefer the opposite gender. With unrelated, they seem to prefer as young as possible and same gender, but I can't recall why.

I am thinking of all of you tonight, who have helped us on the very unexpected and very scary journey so far. I don't know how others get through this without this sort of support. I still wake up every morning shaking in a kind of sheer terror but have hope that will subside, and hope makes almost anything bearable. Andrea, prayers to you as I know you are dealing with a biopsy this week, Ed, may your edema subside and full health be coming very very soon, Cliff and all the others who have helped me- you are specific answers to prayers in a very real way. I am able to support Keir infinitely better because of all of you, and this despite anxiety that threatened to sweep me off my feet and into an abyss. thank you....

Lori,

Keep us posted every step of the way. Yes, I asked two major researchers at Memorial Sloan Kettering today (Who I have been meeting with so they can gather Plexxicon information). They said opposite sex with siblings is the best sibling possibility statistically. They said age and children were inconclusive but young donors are also a good prognosticator. So that would be GOOD for Keir.

Boris,

Thank you for the info. I am so sorry about your eyes. I have mild gvhd in my eyes, but they are overly wet. Crusty and very liquidy until around noon. Did your start this way? My docs have said it is better than presenting with dry eyes. I have a rash (gvhd) and dry mouth and slightly elevated liver lft's. I am sending support eye wise and hope you find some relief. Are you on prednisone?

Nonetheless I appreciate your info and the fact your are able to work. Hang tough and good to have you on the board.

Ed

Hi Ed. I was on Prednisone for a short time (actually it took a long time to get of of it). It did not improve anything. My eyes were never watery, rather dry for some time, just not enough to be a problem. I did have some unusual discharge thru the night for couple months, needing good cleaning in the morning. That stopped when extreme dryness started. I heard of another patient having symptoms more like yours. I don't believe it is the same process as my case.
I'm currently going thru photopheresis treatment that could help with GvHD, especially with skin, mouth and eyes. No improvement yet.

Cheers
Boris

I wanted to thank everyone for the information and encouragement. Right now we are "home" (my parents' house) and Keir had bloodwork done at clinic yesterday after round one of consolidation. Counts dropping (his last chemo finished at five a.m. on Tuesday), so it was about 48 hours past) but not enough to need blood products yet.

The bone marrow coordinator said she is contacting several of the matches through the donor registry. Of course, we're very anxious to get moving on this while he still feels so well and before anything might go amiss but I know it can take time. Keir has to see a dentist because he almost certainly has a cavity or needs work done before hand; I need to ask about the exact timing of that and figure out what dentist can handle this properly. (with no dental insurance, he'd not gone in a few years except for the odd emergency). He's walking and using his exercycle every day and so far appetite good. I know we have to be extremely careful about infections. Other than the hospital he goes to no public places and we are being careful about handwashing and food; not quite sure what else to do.

The mental battle is proving a tough one for all of us. Being home - and usually alone - so much gives one a lot of time to ruminate and worry. We are continuing to try to find strategies for dealing with the worry.

Thank you Boris. Hang tough. The good news is those dealing with GVHD are all pretty likely to have GVL which is definitely a good thing. My mouth is really dry now and they say it's GVHD as well as the rash, but as you predicted they don't think the eyes are. I am hoping the Photopheresis sets in and begins to lessen your symptoms. Hope the lenses are helping as well.

Lori,

Hang tough. All seems to be going as expected.

Ed

Hi ,A 10 out of 10 match is great,& 19 of them is amazing, I had a Stem Cell Transplant on 3-11-2010 ,Out of 7 million people I had one match & he was a 10 out of 10 unrelated match,,he was 25 year old male,I had very little GVHD, it's was awesome how well I done,I never had to take steroids ,its been 3 years & 7 months, the only problem I have is ,chemo burned my thyroid up,but I take a pill for that,I'm doing great,was off rejections meds by the end of dec. 2010.