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CLL Support Association
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Transplant in sight

It's been a while since I last posted but I finally feel that the transplant is in reach.

Ibruitinib and Venetoclax combination is having an amazing impact with WBC now in the normal range at 8.90.

Lymphocytes down to 5.90 and once they reach 4.50 or below, my bone marrow will be checked for % of CLL.

It seems to have taken an age to get here, every visit has been preceded with a restless night of anticipation, usually dashed with disappointment the following day. That's the built in control freak and impatience of my nature. But as my old boss used to say, good comes to he who waits.

Have a great (UK) bank holiday weekend everyone. 🌼

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Do you mean a bonemarrow transplant or something else?

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Yes I am having a bone marrow / stem cell transplant from an unknown donor

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KAS8,

I understand the why for the transplant, but why now?

This always something I wondered for myself.

Jeff

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I was put on the FLAIR trial incorrectly as they missed I had TP53 deletion. I was then offered a transplant as the current drugs will fail at some point and because I am relatively young and fit with no prior chemo treatment. Whilst there are risks, the odds are favourable for a complete recovery from CLL

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It’s good to hear a positive post from you KAS8. Great news that your count is almost in the normal range and the BMT is hopefully within touching distance.

Please let us know about how things are as you go along. Take care.

The weather looks good this bank holiday weekend for us in the UK Midlands, let’s enjoy it! πŸ˜Žβ˜€οΈπŸŒΊ

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Thank you.

It's a beautiful day today too. I hope you are well X

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Great news good luck keep us informed.

Ann

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Hi KAS8,

Wishing you all the best on the transplant and a quick recovery as well. Please keep us updated on how you are doing.

Big hug,

D.

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Maybe you can get to MRD negative in your bone marrow with the combination If I plus V.

I am 17 P deleted unmutated and was able to get there so far.

I started from treatment naΓ―ve though .

Are there any car – T trials in the uk?

Brian Koffman of CLL Society Message went through it. You can read about it on his website and blog CLL Society .

Be well,

Hoffy

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He went through transplant too without success.

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I have been following Dr Koffman. Car T is being looked into at St Barts in London but when I discussed this with both my consultant and a research doctor, both shyied away from it until such times there is more long term effect known

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Wonderful news! Hope all continues to go well. πŸ‘πŸŽ†πŸŽ‡πŸŽ‰

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all best wishes! my husband is 3 years post transplant (unrelated donor, 10 for 10 match, peripheral stem cell, RIC). he no longer has CLL but does still have a fair struggle going with GVHD.

we were told that the more controlled the leukemia is, the better the chances for successful transplant so it's great your numbers are so improved. with ibrutinib pre-transplant, he got to near-normal blood counts. in fact, he said it was the best he had felt for some years, right before transplant, because of that!

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It's good to go into transplant feeling fit and well. Glad to hear it was a success.

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