Hi Annie,

So glad to see you made over to this amazingly supportive group. It may be slow due to the holiday, but I am sure some of our SCT experts will chime in soon with perspective. Please have a blessed Thanksgiving.

Julie

I had mine drop at about 8 months. I don't remember by how much but I was in the high 80's I think. Same thing though, myeloid cells at 100%. I'm 23 months post transplant now and at 100% and doing fine. Stay positive, not easy I know. Welcome aboard, lots of fine people here
Davej

Hi Dave! Thanks for responding. Did they do anything to get your chimerism up?

Hi Julie!

Have a great Thanksgiving!

No, they didn't do anything but monitor it to make sure it didn't go any lower. And it never did, just increased over time. It took me a long time to be 100% donor. My donor was my oldest brother.
Davej

Hello Annie. I recognize you from the LLS board and we're happy to have you here. I actually send Julie over to LLS and now I see others doing double duty. as I have been for a couple of years.

Vidaza is not typically part of post SCT treatment. They were considering it as "insurance" for me some time ago but never followed through with it. But I think that was more because I was FLT3 positive as I was always told I was 100% donor although never any talk of marrow or t-cell differentiation. I'm not sure how the drug differentiates between your cells and the donor's cells if your cells are normal. I would like to know that. I think you should ask that because Vidaza does have side effects and before they start on an unconventional protocol you should understand it fully.

Good luck and come back to us as things develop.

Lou

Yes Skinny Fly Paper Lou,

I have invited Annie and Julie over from LLS hoping someone had experienced this issue with chimerism. Thanks for starting the trend.

Blessings
Julie

Hi Lou,
My doc has always talked about chemo insurance for me since I was high risk with 2 inductions and now a less then 100% marrow chimerism. He told me Vidaza may become part of SCT (haplo) protocol. Side effects are nausea pre treated with nausea meds. but that I should be able to drive back and forth to JHU. He also told me it has shown success in getting rid of host cells. I don't know how it differentiates the cells but how does any chemo really? My doc is pretty conservative when it comes to chemo. He hates putting more toxins in the body

Welcone Annie. I'm not to sure about Haplos but I would think a full dose DLI would be in order for you, it's a widely used treatment for falling chimerism and it's More or less sending in more of the new donor cells that will "seek and destroy" your host cells, which are now the foreigner in your marrow. My husband had preemptive DLIs as part of a study we enrolled in, and unless you have Grade 3-4 gvhd they might be or should be considering it.
From what I understand Vidaza is a chemo, it is designed to kill rapidly dividing cells, cancer cells, leukemia cells. If your marrow is cancer free I agree w Lou, I'm unsure about it being used to get rid of host cells. My husband received Vidaza as part of his reinduction chemo protocol. It is also a common chemo drug for MDS too and used as a post transplant relapse drug but your marrow is clean so that wouldn't be why your docs using it, but perhaps its bc of the haplo SCT aspect. I am not a doctor or expert but I know WAY too much about this stuff than I ever wanted to
When's your next appt?

Thanks for your response! I think they are using Vidaza because these new cells though normal have developed rapidly. The Tcells are still 100% . I had/ have grade 1 acute and chronic skin gvh.

Just emailed doc and he said since I've had gvhd it's not the first choice but it's still on the table

Ok I'm glad you asked, so my hubby had grade 2 acute skin gvhd but the it cleared up w a steroid lotion
They still proceeded w 2 (of 4) of his DLIs and it didn't make the gvh worse or return prob bc there was enough donor T cells in his system by that time
I'm sure whatever your team decides is because it's best for you! best of luck and keep us posted

Just one more thing I just thought about. My doctor makes it a point at every visit to point out my elevated lymphocytes. Last visit the % was 59% when the high end of the range is 44%. It has resulted in chronic GVHD which has been very manageable. My doctor thinks it has been key to me remaining in remission. Has there been any talk of lymphocyte counts?

You guys are soo helpful thank you! Lou, my lymphocytes are increasing and they are low normal. My neutrophils are always high or high normal. Will keep an eye.

Leapea, my Tcell chimerism is 100%. Just my marrow chimerism is now 89%. The vidaza is protocol for this condition as well as DLI. Doc says he's doing it as a prophylactic right now. I'm sure if it doesn't work we'll move to DLI

Thanks again. I'll keep ya posted!