I was recently entered into the bone marrow match registry(bethematch.com) for backup purposes if the TKI's decide to fail I was told I had a very Rare DNA strand and had no matches except for "at best" 3 maybe 4 8/10 -9/10 matches. Very discouraged and I'm not sure I should be?? 23 million people and not one match!! I have a BMB coming up and I will have been on Tasigna for 3 months at that point, I guess just knowing If I fall I have no one to catch me is really eating away at me......Anyone ever experience this or am I as "RARE" as my mom tells me I am Love that lady!
Not one 10/10 match! Only 3 8/10-9/10 matches! anyone else experience this??
Posted 15 January 2014 - 11:27 AM
Diagnosed Oct 2013 Started 600mg of Tasigna on Nov 4th. Lowered dose a few months later to 300mg due to side affects stayed here declining PCR until March 2015 small jump from 0.0072 to 0.0083 scarred my doc into full dose of Tasigna again 600mg(been miserable since) but reached PCRU 06/15/2015(next test) and have been there ever since. Hoping to have another little one. I have the support of my doc to go off anytime, just scared to jump. might go two years PCRU but he said it wont make much of a difference. I just figured I could possibly go into a trial while preggers if I got the two years behind me.
Nov 8th 2017 went off Tasigna
Dec 1st PCRU off TKI
Jan 5th PCR Detected .0625
Feb 1st PCR Detected .7815
Added 8-6 grams Curcumin daily in Feb
March 3rd PCR Detected 3.2646 YIKES!
stopped trying for baby after February reading. will start new TKI march 16th 2017 (Sprycel)
FYI I'm not done trying for my last little one.
Posted 15 January 2014 - 12:31 PM
You might want to post this on the transplant forum also.
I surely wouldn't be worried. There were only three potential matches for me worldwide and they were all 9/10 matches. I had my SCT over nine years ago and I'm doing pretty good. You only need one match anyway. Figuring the mismatches are workable or they wouldn't have reported those to you, the likelihood one of them will be "perfect" for you is pretty good.
Better still, these aren't necessarily the people you're going to have to dance with. You haven't even gotten your invitation to the dance. By the time you actually need a transplant, should that ever become necessary, chances are that there will be a whole new slew of candidates.
Anyway, they haven't done much of a search yet, They don't really start getting serious about it until a transplant's been recommended, agreed to, papers signed and financial arrangements made.
My suggestion is and would be to expect the Tasinga to work. If you're going to take the treatment, might as well be confident in it. If it doesn't work see where you're at and go from there. The landscape is constantly changing.
Posted 15 January 2014 - 12:39 PM
Oh, can't really comment on your rarity. But I'm told we're all unique like little snowflakes.
Anyway, are moms ever wrong?
Posted 15 January 2014 - 05:55 PM
I wouldn't worry about it at this point. The vast majority of CML patients respond well enough to one of the 5 TKI drugs that a BMT never needs to be considered. In fact, BMTs are pretty rare for chronic phase CML patients.
When I switched doctors, she originally wanted to get my sister typed just in case. Once she confirmed by BMB that I had a CCyR, she said there was no need as my change of disease progression was very small.
Diagnosed with CML in July 2012 (33 years old)
MMR since March 2015; E453K mutation
Posted 16 January 2014 - 10:00 AM
Because I'm "relatively" young and will probably take TKIs for quite a while my oncologist recommended that I do the same thing just to have a backup plan. I made an appointment with a specialist at Johns Hopkins who actually turned out to be the Director of their Bone Marrow Transplant program.
In looking at the fact that I was diagnosed in Chronic Phase and am responding to TKIs he laughed a little at the notion that I would need to consider bone marrow transplant options at this stage.
He also mentioned that they are making great progress in their treatments and that innovations are always being developed. So even though there isn't a perfect match for you now it doesn't really matter because you don't need a BMT now and the options will continue to improve in the future.
At this point, though, he mentioned that he wouldn't even consider pursuing BMT or SCT preparation now as it's unnecessary.
Posted 18 January 2014 - 10:17 AM
Unless you are an actual transplant patient you will only receive partial HLA matching information. When a healthy person signs up as a potential donor the matching test done on only 6 HLA alleles. Potential donors are only checked for this limited number of matching alleles until an actual transplant patient needs a donor, then the ones who match the initial six will have further testing done. This is because of the expense involved in full HLA matching for people who sign up as potential donors. So the reality is you will not know if there is a good or excellent or "perfect" match unless you start the actual transplant process. That is why you have only received an estimate at this point. Also, the numbers do not tell the whole story since some alleles are more important to match than others.
Anyway, most transplants are done below 10/10 unless it is a matched sibling donor. Each sibling has a 25% chance of being a 10/10 match. 10/10 unrelated donors are difficult to find for anyone.
Posted 18 January 2014 - 12:28 PM
Yes, but many use 6/6. A very few demand a 12/12 match. Really rare are those who use 8/8 matches but there have been centers that look for that.. Just like everything else, it pretty much becomes moot until the patient has made some decisions, the most significant to this is choosing a transplant center.
You actually got a lot right. Proud of you.
Thanks for sharing your experience.
Posted 25 March 2014 - 03:49 PM
My husband just went through an Allo SCT with a 9 of 10 match. We couldn't find a single 10 / 10 match and this was the only 9/10 match. The transplant was on Feb 19 and 14 days later he was recovering at home. He is doing great and progressing like a champ.
Posted 26 March 2014 - 10:03 AM
Just want to make sure you're aware we have a transplant forum here, too. You might want to check in with us from time to time, especially as issues turn away from CML and become more about SCT issues like GVH. I had a 9/10 match and was out on Day 14, too.
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