CLL Support Association

Stem cell transplant

Hello, I feel lucky to have found this site. Getting a stem cell transplant soon and was wondering if anyone has done this procedure. Also if anyone’s been cured. I have 17 deleted.

Not sure if this is a question that’s already been asked.

Also if there are any suggestions to preparing... I was told about Gut health and to take many strains of probiotics to ensure a healthy micro flora. Going to start a excercise program as well.

Thanks!

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What type of transplant? Have you met with your transplant team yet?

Best to follow their directions to the letter.

There are a few transplant patients on this forum, they might respond.

~chris

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Thanks for answering. All I know is it’s a stem b cell transplant. The team are waiting for my siblings to be tested to see if there’s a match.

Kevin

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Hi lucyinthesky

I am just replying to raise your post in the news feed as I know we have folk who have had a successful transplant and no longer come on here so often. I think putting cll behind them.

Hope you get more replies.

Best wishes

Bubnjay1

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I had my transplant in 2008 from an unrelated donor but it was a good match.

A number of infections in the first year were well managed - kept a close eye on my temperature and got into hospital immediately if it went up . Avoiding anybody with coughs and colds - particularly young children- was key . Wash hands and use alcohol gels religiously.

Good Luck

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Hi mikeluke,

Pardon the question but may I ask what was the process like? I don't think I've read about that many people who have had one. Did it involve being in the hospital for a while? Usually for these procedures we imagine all kinds of things and sometimes is a bit "easier" than we think. Like when I was first told I was going to need a bone biopsy, I imagined the worse and yes it was no fun, but it was not as bad as I initially thought. And by the way, how are you doing now?

Thanks much.

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I was also 17p deleted but in a good remission when the transplant process started.

I was given a cocktail of chemo and a single low dose exposure of total body irradiation . I was then into an isolation room in hospital and the stem cells were put in via a drip over a couple of hours . Your white cell plummet to zero ( red cells are slower) and you wait for the stem cells to take and start to produce new cells I think was 10 days before the first reappearance of neutrophils was evident.

I had red cell and platelet transfusions at 14 days to support me and by day 18 I was deemed fit enough to come out of isolation and go home .

Your Diet is strictly limited no salads , cheese yogurts, fruit unless the skin has been peeled off. No visitors unless necessary .

Unfortunately I picked up infection and was back in hospital for another 4 weeks to sort that out.

Main consequence was getting shingles 6 months later ( you are prone to this whilst your immune system remains compromised) which has left me with permanent neuralgia on my upper back. But otherwise 9 years on I am in good health for a 67 year old .

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OH that requires a BIG WOW! Sounds like It is indeed everything I imagined it would be and more! Thank you for describing it for us.

And so being in good remission as you mentioned you were, it still had to be done? Could you have remained a little longer in remission and w&w or was this sort of a "preemptive" decision, due to being 17p?

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After being on W & W for 2 years I had FCR which was got me a good remission .However 2 years later I relapsed with Richters transformation which was treated with RCHOP . The advice was to go for the stem cell transplant whilst I was in the subsequent good remission with a close match available. The odds for success were much greater than waiting until I got ill again which was very likely with the 17p..

The transplant team showed me their detailed risk analysis ( which takes into account factors such as age, weight, general health and fitness, number of matching points with donor etc_) This helped to overcome my apprehension and convince me to go for it.

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mikeluke, this is very informative and illuminating for all and especially for me and those in the 17p "category".

To be honest, this had not really been in my mind that much and so hearing about your case, has me not only thinking about What would I do? But also I want to bring it up at least as a "topic" with my CLL Specialist and just get a feel for what he has to say. So Thank you so much for sharing your story..I appreciate it!!

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Just real quick to further explain why this was important to find out, is that what little I understood about it had me believing that one had to be very ill for this to be the option and is almost quite the opposite of that, apparently one would have to be at an improved phase of treatment to be a "better qualified" for this..so to speak.

Anyway...Thanks again!

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Many people I have told have been successful with a BMT. It is a very difficult and risky procedure though. Just curious if you have look at new CAR-T trials?

Be well.

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Did you treat with iv or by mouth drugs first or, are you going straight to the transplant

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Bethematch.org (US based) or Anthony Nolan.org (UK based ) are good resources for information about the stem cell process. Transplants involve treatment to knock out the leukemia first so that you have the best chance of the new cells taking over.

Different centers have different protocols. Some centers want you in the hospital for longer than others. Once out, there are usually rules about how far you can be from your team., and you are required to have a caregiver 24/7 for at least the first 100 days.

Transplants are much more common for acute leukemia patients, especially with some of the newer treatments for CLL, though they can be the only option left for some CLL patients, and I know several who have done very well post transplant. I would certainly make sure that you have a CLL specialist on your team if transplant is being discussed.

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Thanks very much!

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my husband had a transplant in feb 2015. siblings were useless ( joking!! ) but they found a 10 for 10 matched unrelated donor. he was very ill with the CLL taking off in fall 2014 and they planned to rush the transplant in Nov until he got special access to ibrutinib, which was not yet approved in Canada, and the transplant was pushed back some months as he responded well. 5 months on and he felt better than he had for some years, and went to transplant. he was 17p but it was aggressive and was developing new mutations as well and was judged high risk. one success factor in transplant is how under control your leukemia is somewhat backed off; that's what the ibrutinib was for.

he went off ibrutinib and had a variety of "conditioning" chemo/drugs over 10 days to kill off his own faulty immune system. some were easy, some were unpleasant. he had the RIC protocol; no radiation. the donation arrived in an IV bag and was administered by IV over a few hours. he felt ok until evening when he spiked a fever and got fluid building around his lungs and heart. that made for some unpleasant, painful days and nights but did resolve. it wasn't usual to have that but there are always the unexpected challenges. he was in hospital for another few weeks until his blood counts had climbed into a safe range. he doesn't have leukemia any more, so say several bone marrow biopsies.

he had frequent blood tests in the early days, going less and less frequent as time went on. around 100 days they did a number of tests including the one for chimerism - how much of his blood was made by the new bone marrow and how much was from the original.

he had some early GVHD (graft vs host disease) of skin and gut, which was treated and resolved. he's had more GVHD over the last 2 1/2 years and is still dealing with it as well as effects from the drugs such as prednisone. some patients have no GVHD, some have a little, some have a lot.... can't predict it. despite being on lots of immune suppression to keep New Guy/the GVHD from being too aggressive, he has only been seriously ill once in 2 1/2 years.

best best BEST wishes!

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Really great information...thanks very much!

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Hi Sumok

Your reply is very enlightening.

My son still has very low platelets; last time it was 40 (not 400 just 40). He gets platelets every week as he does not produce them organically. In a few weeks he will have to go through another bone marrow test.

His HMG and Neutrophil counts are OK and produced organically.

He is now 6 months post BMT. I can't help being worried. I keep hoping and praying.

Any feedback is welcome. Thanks.

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sometimes it just takes time... 6 months is still early days. hope it's just time, and not much more time, for your son.

there is some sort of boost transfusion you can get from your donor, i think, than can help with insufficient engraftment. . sorry i don't know much about it. you could ask your hematologist if something like that might be appropriate?

my husband's platelets were his best count for about a year and a half when they started dropping. the docs consider it to be a sort of GVHD even though it would be technically "GVG" - graft attacking platelets made by the graft.

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Thanks for the information.

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How is your husband doing now ?

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see PM - just realised this post isn't locked to the CLL community

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