Strange Chimerism results: The Leukemia & Lymphoma Society Community

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15 Replies Last post: Dec 3, 2009 11:34 AM by marta 1 2 Previous Next

suea

274 posts since
Apr 4, 2009

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Nov 17, 2009 9:59 PM

Strange Chimerism results

I’ve been lurking about, trying to follow the various threads, but it’s been quite a while since I’ve posted. I’m posting now though and would like to know if anyone knows anything about what we might be dealing with now.

Today is Ben’s day +63 since his transplant, using his brothers stem cells. He has been home since September 30, and he has been doing so well. No unusual fatigue, working from home, and his counts have been pretty good, with some fluctuation. Today, they were:

Wbcs 4.4

Hgb 12.1

Platelets 186

We have been going to the clinic weekly, and with the exception of the wbcs, which stayed the same as last week, the other counts went up.

In the Hackensack study Ben is in, he gets frequent chimerism tests. He had the first one on October 13^th, and the results were 100% donor. The second chimerism test was done last Tuesday, November 10^th, and we got the results today. The chimerism results were shown between donor and host for CD3 and CD15. I may have this backwards, but I don’t think so. The CD15, something to do with granulocytes, was 93% donor, and the CD3, something to do with T-cells, was 7%. Dr. R. said he is puzzled with this 7% number since all the results a month earlier were 100%, and also because Ben seems to be doing so well and his counts are so good.

He decided to do the chimerism test again today since maybe the 7% was an error. If it is not an error, he will probably just take a watch and wait approach. Also, on day +84, December 8, Ben will get a BMB, also part of the study requirements, as well as another chimerism test.

Does anyone know anything about this?

Thanks,

Sue

PBS99

221 posts since
Jun 10, 2009

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1. Nov 17, 2009 10:31 PM

in response to: suea

Re: Strange Chimerism results

Sue,

Those chimerism results DO seem very strange. I have not heard of the study Ben is participating in and am basing my response on my experiences with my own mother. My mom had a SCT in March of this year and I do know that there are different numbers for different variables of the chimerism, but we usually get the percentage of donor T cells versus the percentage of my mom's own cells. I have to think that based on how well Ben has been doing and how good his counts look that the 7% is an error - in the lab or typographical. That seems very odd. To only have 7% donor T cells would mean that his graft was probably not working which obviously isn't the case. I hope the latest chimerism results come back quickly and this issue can be put to rest. I imagine that you are very anxious about it as I would be too.

Please keep us posted.

Polly

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leahamarie

34 posts since
Apr 4, 2009

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2. Nov 18, 2009 5:04 AM

in response to: suea

Re: Strange Chimerism results

Just wanted to reassure that mixed chimerism is not always a problem. My son had a matched sibling bmt for AML in 2002. He never achieved lasting full donor chimerism. It hit 100% a couple of times but settled into the 90's and last year dropped to 86% donor . He had his annual test 3 weeks agoso I'm still waiting on those results. He is still well and cancer free 7 years on despite not being full donor.

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Tex

3,848 posts since
Apr 3, 2009

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3. Nov 18, 2009 3:29 PM

in response to: suea

Re: Strange Chimerism results

My first thought was the same as the doc's. One of those tests were wrong. The problem is that they can only recheck the more recent one. What if a mistake was made on the first one, they'll always be scratching their heads.

I'm saying maybe Ben wasn't really at 100% in October. Just keep that in miind. If my math is correct the October 13 test was on Day 28? Frankly, that sounds way early to have 100% chimera. At the same time, having 93/7 on Day 63 doesn't sound bad, at all.

Finally, I'd guess there could be a little bounce back and forth while things settle out. I just wouldn't worry about what it means at this point. I'd be damned curious but not worried.

Give Ben my best.

Blessings

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secondtimeround

350 posts since
Apr 17, 2009

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4. Nov 22, 2009 8:54 PM

in response to: suea

Re: Strange Chimerism results

Sue,

Definitely sounds puzzling, but it's reassuring to hear that his counts are improving. How long 'til you get the results of the repeated chimerism?

Cathy

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suea

274 posts since
Apr 4, 2009

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5. Nov 22, 2009 11:30 PM

in response to: secondtimeround

Re: Strange Chimerism results

Cathy,

Probably this coming Tuesday, we'll get the chimerism results. That is, if they collected enough blood to be able to do the test. Since Ben had just had his blood draws done right before seeing Dr. R., and the blood draws were not originally intended for the chimerism test, Dr. R. decided to put in an order for the chimerism analysis to be done as long as there was enought blood to repeat the test. He did not think it was worth it for Ben to get another blood draw, and if it turns out that there is not a sufficient amount of blood to do the chimerism test, so be it. Then Dr. R. said we will just wait until December 8th when there is another chimerism test scheduled.

This is really nerve-wracking, especially since everything from the time of Ben's transplant until last Tuesday has been going so smoothly. I am praying this is of no consequence.

How are you and Owen doing? Any transplant dates yet, and where?

Tex,

Your math is correct--the first test was on October 13th, day +28.

I wish I could take your advice and only be curious, not worried.

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mamawarrior

941 posts since
Apr 3, 2009

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6. Nov 23, 2009 7:46 AM

in response to: suea

Re: Strange Chimerism results

Find it puzzling. Did they make any changes in the immunosuppressants at that time?

There was a child at transplant with us who never totally engrafted 100%. He is 3 years out now, no sign of leukemia but it seems like they were constantly adjusting the immunosuppressants to try to get that number up.

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Tex

3,848 posts since
Apr 3, 2009

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7. Nov 23, 2009 12:38 PM

in response to: suea

Re: Strange Chimerism results

It wasn't really advice. I know that avoiding worry over things like this is incredibly difficult.

I'm just jaded after too many false alarms. Probably if something really bad happened, I'd shrug it off for awhile and that wouldn't be smart.

Blessings

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suea

274 posts since
Apr 4, 2009

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8. Nov 24, 2009 6:14 PM

in response to: Tex

Re: Strange Chimerism results

Hi,

We were at the clinic today. No new chimerism results because somehow Ben's blood was just not tested for that. They are going to test today's blood for chimerism.

Ben's #s today were very similar to last week's #s. As soon as we got the lab sheet with his #s on them, I heaved a sigh of relief that they were still good and thought that when the doctor came in, he would give us good chimerism results as well since you would think that good cbc #s would translate to good chimerism results as well. Then, instead of seeing the doctor, we saw the nurse practitioner, and she told us that the chimerism test was never done again.

So, we are in the same place as last week. The chimerism part is still perplexing and scary to me.

MW, no changes to his immunosuppressants have been made since about the beginning of October.

Sue

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Tex

3,848 posts since
Apr 3, 2009

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9. Nov 25, 2009 2:02 PM

in response to: suea

Re: Strange Chimerism results

Sue,

I would flat out go into that doc's office and kick some chimerism ass. That's ridiculous.

Hope they get their act together soon.

In spite of that, have a good holiday tomorrow.

Blessings

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suea

274 posts since
Apr 4, 2009

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10. Dec 1, 2009 7:44 PM

in response to: Tex

Re: Strange Chimerism results

Had our clinic visit today. Ben's counts are still good. The chimerism from last week showed CD15 still at 100% and the CD3 at 15%. We were told that the doctors are happy that this percentage increased on its own (about doubled) without any changes having been made with the immunosuppressants. Ben was told though to now halve the Prograf he takes to see if any GVHD happens. Since we are close to day +100 when they would likely stop the Prograf all together, they feel like this is a safe or smart approach to take.

Will keep you posted,

Sue

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pamd

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Apr 3, 2009

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11. Dec 1, 2009 8:17 PM

in response to: suea

Re: Strange Chimerism results

Glad things are looking good, Sue!!

Pam

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Tex

3,848 posts since
Apr 3, 2009

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12. Dec 2, 2009 1:11 PM

in response to: suea

Re: Strange Chimerism results

You know, it could be that Ben's just freaky. I've seen weirder around here.

Do keep us posted. I'm glad things are looking up from the previous visit.

Blessings

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KyGuy

1,249 posts since
Apr 3, 2009

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13. Dec 2, 2009 1:52 PM

in response to: suea

Re: Strange Chimerism results

Glad to hear you got some good news. Keep us posted.

Kelly

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mamawarrior

941 posts since
Apr 3, 2009

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14. Dec 2, 2009 7:48 PM

in response to: KyGuy

Re: Strange Chimerism results

So glad to hear of the change in chimerism and that the doc is pleased with it.

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Nov 17, 2009 9:59 PM

Strange Chimerism results

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