I have read all the hospital pamphlets and a transplant seems like a very difficult process with many long term side effects. One pamphlet said 'you will feel ill for a year after the bone marrow transplant and may never fully regain your health'. Another said it may cause cataracts a couple of years later. Transplant seems to involve two lots of severe chemo and a week of full body radiation in an isolated lead lined room.
Has any one with CLL who has had a transplant, had long term health implications from it? Are there any recent stats regarding survival rates? - Chaya's CLL Topics info on this subject is quite old now. Finally what are the chances of CLL reoccurring post transplant?
The transplant process seems so gruelling I am wondering if it's not worth waiting for the new more benign drugs coming along, rather than permanently damaging my health now.
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Has the bone marrow transplant been suggested by your specialist and the match with your sister confirmed? That's very good news on the match if so. Bone marrow transplants were until recently considered the only cure for CLL, but don't always work. (While it now seems that a few with the right genetics may be cured by FCR, the success rate of bone marrow transplants isn't limited in the same way, so a transplant may still be effective if FCR doesn't work). As you've read, they have a higher risk than chemotherapy, so are not considered for CLL unless available chemotherapy treatments don't work for you. While it is true that there maly be long term effects from a bone marrow transplant (usually related to graft vs host disease), there are drugs that can help reduce the effects. Don't forget that chemotherapy can also cause long term effects, which is why so many of us are enduring Watch and Wait.
The transplant risk does increase with age, which you need to consider when you discuss with your specialist whether it is advisable to hold off on the bone marrow transplant in the hope that new treatments will be available.
Dr Brian Koffman, who regularly contributes to this community had a bone marrow transplant which didn't take and you can read about his transplant experiences on his blog if you are interested. See: bkoffman.blogspot.com
Bart’s have published many papers and articles over recent years and are a world leader in this area for CLL if you google Prof John Gribben and his work at Bart’s and SCT many will be returned, one in particular from 2012 caught my eye In the forward Prof Gribben states:
“ The use of SCT must always be weighed against the risk of the underlying disease, particularly in a setting where improvements to treatments are leading to improved outcome. The major challenge remains how to identify which patients with CLL merit this approach and where in the treatment course this treatment can be applied optimally
It is a very big decision for you Molly , much to discuss and weigh up with your medical team. Have you run out of options? Is there a trial of a novel therapy open that can offer an alternative now? You mention waiting for one to come along, your clinical team will know what alternatives are on the table now and what is in set up.
Transplant in Chronic Lymphocytic Leukemia: To Do It or Not and If So, When and How?
Chonette is away on leave at the moment she is off living life to the full following her response to transplant. She may be able to offer you some insights upon her return,
The following research should be part of any discussion and decision when a patient is to be a recipient of HSCT from a female donor. Since you stated that your sister will be your donor, part of the risk side of the equation may center on whether or not she has ever been pregnant particularly with a male fetus. I believe it does not even mean the pregnancy has to come to term but ask about it. Below are two research papers in full looking at this issue. The first one is about a male patient as recipient from a female donor and that may make a difference but as Chaya might say, "you are the one with skin in the game" The 2nd paper was just looking for Male DNA in female blood.
I have a good friend who got an HSCT from his brother donor and is considered cured with very little GVHD that he no longer has to take drugs for. The polar opposite was a fellow I met at the 2007 Canadian CLL Conference who had GVHD that would make one probably not want to live. This is why the decision to have an HSCT is so hard to make.
Thanks to everyone for all the very thorough info, it's given me a lot to think about. As I am not a high risk patient as far as I know (Trisomy12) and bearing this in mind I think I'll hold off on a transplant and keep going with the FCR.
I'm in the middle of my second 6 months of chemo, this time with FCR and first time round I achieved a 4 1/2 year remission with FC. I can see that if your back's against the wall the odds with a transplant are better than the alternative but I still have OK options and the new KID drugs look promising.
Thanks again this has helped me make a more informed choice for the moment.
ThreeWs my sister has had a male child, another thing to consider in the equation, mind you I've had four male children myself so it shouldn't be too foreign!
My husband had a transplant nearly 4 yrs ago , with his sister as donor ;had he not had it , he had about 2 months to live ! so no choice really . Everything went very well , and he went through the first 100 days - the key time for problems, without a hitch ..then .. graft-versus - host disease(GVHD) set in . This manifested itself in a rash all over his skin . The treatment , 18 months of fortnightly -2days in succession - of photoporesis-or ECP - for short . This involved having his blood extracted , and then treated and then sapped with ultra violet light (Like dialysis for the blood) dark glasses then being worn for 2 days . It did improve his skin condition , but was draining on the body . After finishing that, he then started with it(GVHD) in his mouth and eyes , and he got shingles too! His eyes are very sore and dry , and his mouth very ulcerated . He has had his tear ducts blocked , and sees a dental specialist this week . So yes , he has had and still has lots of problems , and the quality of life has not been too good , but things are picking up a bit ,BUT , he has had 4 extra years of life , and has seen our son marry in that time ,and we have had our 40th wedding anniversary . We are asked - 'was it worth it ?' . Yes , would be our answer , for whilst not being easy , he is still looking at the daisies from above !
Good luck with everything .
Jenrus
PS any transplant done from a female donor , no matter how good the match ,often causes more problems for the recipient , than from a male donor , according to our doctor.
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