six months post unrelated donor stem cell transplant

[dwolden]

Hi everyone,

It’s been months since I posted here.

My husband had an allogenic stem cell transplant last August 22 to treat high risk “treatment related” MDS that he developed 9.5 years after completing 6 months of FCR chemotherapy for CLL.

The transplant process was every bit as challenging and demanding as we were told it might be. Wow we went through it.

We lived near Mayo Rochester for 4 1/2 months (200 miles from home). Seen every day for two months, with three hospitalizations due to infections and or complications.

Then visits further apart and finally released to come home at the end of November, with frequent trips back for tests and follow ups.

There is no real “safe” time in the near future anyway. We must be constantly on the watch for “graft versus host disease.” His blood counts are still low and he will be getting a “boost” of donor lymphocytes (thank you dear donor whoever you are) to improve the new immune system and hopefully root out any lurking malignancy. After the blood counts improve his transplant specialist says he must have several cycles of “maintenance chemo” (low dose decitibine) to be sure the MDS does not return.

So we’ve come a long way but there’s a lot more ahead. The good news is none of his bone marrow biopsies or scans have shown ANY sign of CLL and latest are fully free of any malignancy.

David (my husband) feels pretty well and while we are extremely cautious about being in public or general interactions, we are living a good life in our home that he built us in the Northwoods of Wisconsin.

Wishing everyone here in the community well.

[Jm954 Administrator]

This is just the best news, I'm so happy for you both.

I'm 20 months post my all transplant and in remission. As you say, it's a very challenging recovery but, hopefully, very worthwhile and long lasting.

All the best

Jackie

[LeoPa in reply to Jm954]

Jackie, why don't they do autologous stem cell transplants? Is there no way of harvesting or filtering out enough healthy stem cells from the patient that needs it? Do we have no healthy stem cells at all?

[Skyshark in reply to LeoPa]

Doesn't work very well, preliminary intensive conditioning is tough and 7.5% mortality is too high. CD20 B-cells are killed before transplant.

sciencedirect.com/science/a...

AlloSCT with Reduced Intensity Conditioning (RIC) is only advised for those with very high risk markers. IgHV mutated and TP53 aberrations that have relapsed from prior treatments. At present it's preferable to offer AlloSCT when a good response to the 2nd treatment with novel drugs (cBTKi>BCL-2+mab) has been achieved as it's unlikely that this preferred initial condition can be reached using any treatment available after that.

sciencedirect.com/science/a...

[LeoPa in reply to Skyshark]

I understand it's a last resort but is autologous worse than SCT from a donor? At least GVHD risk would be eliminated that way,right?

[dwolden in reply to LeoPa]

Autologous not an option for my husband because of the nature of his disease. It does spare patients the risk of GVHD but risk of relapse is higher.

[Jm954 Administrator in reply to LeoPa]

In an allo transplant the small amount of well managed GVHD is important to eliminate the CLL and, of course there is no GVHD in an auto transplant. All transplant recovery is certainly challenging for older patients but the degree of fitness rather than just age is the determining factor.

In an allo transplant the donor T cells provides on going protection against relapse. After my transplant my donor T cells levels were only 45% and not high enough to prevent relapse. I had a transfusion of donor T cells to try to boost the numbers with careful GVHD monitoring. I had the smallest amount (can't remember the number of cells) and they multiplied exponentially. My numbers are now 95% (90% needed) in both blood and bone marrow.

Autologous transplants are not used for acute lymphoblastic leukaemia because they too rely on some degree of GVHD to eradicate the disease. They are now the standard of care for patients who are fit enough with myeloma, many patients even having a second one.

Jackie

[LeoPa in reply to Jm954]

Thank you,now it's clear.

[mrsjsmith in reply to Jm954]

Great news Jackie 95% is brilliant 🙂

Colette

[Skyshark in reply to Skyshark]

AutoSCT is really only a viable treatment for the young, Acute LL rather than CLL.

This is typical. The median age at alloSCT was 47 years (range, 18-65 years). For CLL the median age at diagnosis is 70-71. The majority will be over 65 by the time a first and second line treatment fails and that now puts them inline for AutoSCT.

With FCR the high risk with TP53 aberrations (10%) had very poor response. Ibrutinib and more recent Venetoclax+Rituximab for second line has changed the results dramatically. 65 year old is about one standard deviation, the lower tail was 15%. Successful first and second line treatments moves the start line to 2 standard deviations at 55 years old, makes the lower tail 2.5% of the 10% with TP53 aberrations.

From the 2nd link above :

Myeloablative allogeneic SCT is associated with high treatment-related mortality and, TRM few late relapses, but is applicable to only a small number of CLL patients. The major focus of SCT in CLL has been with reduced-intensity conditioning (RIC) allogeneic SCT, which is applicable to the more elderly patient population with this disease and which attempts to exploit the graft-versus-leukemia (GVL) effect that exists in CLL.

TRM - treatment-related mortality

[dwolden in reply to Jm954]

Jackie congratulations on remission! Have you had any issues with GVHD?

[Jm954 Administrator in reply to dwolden]

No, thankfully it has been well managed and I had a 12/12 match, albeit that he had a different blood group to me and so I changed my blood group from O to A

[Poodle2 in reply to Jm954]

Jackie, that is an amazing result...so so happy for you ❤️

[dwolden in reply to Jm954]

That's great! And encouraging! Our donor was a 9/10 match. Different blood type as well, David changed from A pos to AB pos. His chimerism in the last bone marrow was 95% donor, but in the T cells in the peripheral blood only 60% donor. Your account of how the donor lymphocytes helped you is giving me strength. He will get the cells one week from today. Hoping for great outcome like yours!

[Jm954 Administrator in reply to dwolden]

We can only deal with each issue as it arises and hope for the best 😊

Stay positive, these transplant doctors are miracle workers ❤️🙏

[Poodle2]

Fantastic news! All stem transplant stories sound very challenging and this one isn't an exception. I'm glad you have managed to navigate the many obstacles on this journey and hope that he continues with his recovery 🙏🏻 Petra ❤️

[Justasheet1]

D,

You both must be exhausted but you have each other and that’s what matters most. I’m cheering on his continued success.

Jeff

[LFCLove]

Hi, just surfing through similar issues etc and see that David and I have been through the same process. I had an allogenic stem cell transplant back in August 2024 for Primary Myelofibrosis. T-cells have recently been dropping so am back to clinic today for a DLInfusion so 🤞🏻.

So pleased to hear that David is doing well, long may that continue.

G. 🤓