Does anyone know if mini-allo transplant is the treatment of choice for previously treated patients less than around 60yrs. Would ibrutnib be used first if there was potential for very long term use?
Usually treatments are tried first, since transplant carries a higher risk... but there may be other factors to proceed with transplant early, like aggressive genetic markers...
Age is one factor, but so are comorbidities, donor match, depth of previous remission
Here is an overview on RIT, reduced intensity transplant, also now called RIC, reduced intensity chemotherapy, in CLL.
This is a bit old and things have advanced, but it discusses the basics.
Dr. Kanti Rai
Stem Cell Transplantation
With these novel therapies in use, what is the role of stem cell transplant?
There is still a role for stem cell transplant in CLL, but we use it selectively. Unfortunately, some people still do not respond well to the available chemotherapeutic agents. If we are fortunate and these patients have an HLA-compatible donor, then it is prudent to give them an allogeneic transplant with reduced-intensity conditioning chemotherapy. A number of people who were given a “mini-allo” transplant are alive and well today but would have died if not for their transplant.
I am in that category. Last May my oncologist sent me for a consult for transplant. Fortunately I was started on ibrutinib at the same time. At this point, transplant is off the table. My ace in the hole, however, is that 2 of my siblings are good matches. Good luck.
I received a reduced intensity allo-transplant in February even though I had been on ibrutinib for 6 months and was responding well to it.
I'm 54 and age was just one factor that led me to go with the transplant rather than staying on ibrutinib long term. Other factors included: I have the 17p gene deletion which tends make things less stable and responsive; there is not much data yet on the use/effectiveness of ibrutinib when used more than about 3 years; I had several episodes of neutropenia and had to reduce my ibrutinib dose because of that; I had at least two 10 for 10 matched donors (unrelated); financially is not yet clear if ibrutinib will be covered in BC/Canada; ibrutinib resistance does occur and seems more common with the 17p del; and if the the transplant failed then if might be possible to resume ibrutinib treatment.
But the biggest factor for me were some frank discussions with my CLL doctor. She was quite firm in her recommendation that transplant was the best alternative for my case. My wife and I had some concerns that she admitted to being an transplant-doctor and we felt she might have some bias in that direction. Really it came down to our trust that her wealth of knowledge and experience led her to a deeper understanding of my situation and the best alternative for me.
My husband is having a transplant in May. He also has the 17p deletion and has been on Ibrutinib for 12 months (also responding well). He's in his 40s.
I am just wondering how your transplant went? Any advice or information would be greatly appreciated.
is a reduced-intensity conditioning transplant planned for him, MJN44?
The transplant experience is different for everyone. I hope everything goes as best it can for your husband's transplant.
The first of 10 days of chemo conditioning was easy for me. I had a reaction (fever and nausea) to a first dose of ATG but 2nd and 3rd doses were fine. A “bonus” with the reduced intensity transplant is that I didn’t get any radiation therapy. We made the transplant day into a bit of celebration with good music playing and joking with the two nurses that stayed during the the whole procedure.
Post-transplant has been somewhat rougher but I have been getting through it. It started just a few hours after transplant when I spiked a fever - not common so soon after transplant - and ended up packed in ice bags for most of the night. I had to stay in hospital for 17 days post transplant to deal with several issues: fever, constipation, diarrhea, fluid buildup around lungs and heart, painful back spasms, skin rash, etc.
I’m currently at T + 60 days. There have been lots of ups-and-downs and things haven’t always improved day-by-day or even week-by-week, though I can usually see improvement when I look back far enough. I have some GVHD with skin rash/itching and digestive problems but some new drugs seem to now have that under control. GVHD reassures me that the graft is actively doing something. I don’t still don’t feel as well as I did pre-transplant but I understand that post-transplant recovery is a long process.
There are a few tips and things that I wish I’d done a bit differently. I brought my own clothes to the hospital instead of using the hospital gowns as it made me feel that I was less sick . Bring shoes that are easy to slip on & off; my crocs were great even when my feet swelled with fluid retention. I tried to get up for walks everyday, both in hospital and at home. Some days it has been hard to get out of bed but I usually feel better after the walk. Similarly for trying to shower daily. I resisted taking any sleeping pills for longer than I should have; even a half decent sleep lets you bear the difficulties in better spirits. I found that Ativan really helped me one night in hospital when I think my sleeplessness was due to anxiety and I am on a different drug at home. We noted the nurses’ names on our whiteboard; they started it but we found it helpful and kept it up. We noted our questions on it too, to remember for the next time the doctor came in. They keep a calendar of sorts on the whiteboard with transplant drugs and blood counts on it plus the day-count, and we added the occasional note as well.
When I was discharged, the nurses said I would likely have a number of infections. So far I haven’t had any, perhaps because I and my family are taking quite a bit of anti-infection care: frequent hand washing for everyone, avoid crowds, wear a mask in public, shoes off at the door, wash and prepare food well, disinfect commonly touched surfaces, avoid sick people.
What a well crafted description of the transplant process. Now I understand how rough it is.
Please start a thread of your own. I want to know that you are doing well.
G-d bless you and stay strong.
Hope thinks are going well post-transplant and you are starting to feel better. I'm sorry to bother you but was just wondering... my husband's doctor has now decided to do a full myeloablative transplant rather than reduced conditioning. He told us my husband is "young enough to handle it". Did you consider this type of transplant? Was there a reason your doctor decided on a reduced intensity transplant? We're in Australia but from what I have read there seems to be a trend towards reduced intensity transplants? I'd appreciate hearing what advice you were given as, like you, my husband has 17p and is responding well to Ibrutinib.
Thanks very much.
I did not consider a full myeloablative transplant and I did not discuss it much with my doctor other than confirming that I was getting a reduced intensity transplant. I did look up a few research papers to try to understand the difference. I've included a couple of links below.
Sorry that I can't help much more than that.
Just wondering how you are getting along? My husband went in on Tuesday (myeloablative conditioning) and will have his transplant next Wednesday. Hope all is well.
I hope all goes well with your husband's transplant and his recovery.
I am doing quite well. I passed my T-100 milestone (100 days post transplant) on May 30 and have received some excellent results from recent tests: Chimerism test showed that the new immune cells have grafted very well – 93% of my blood cells were made by the new immune system; a bone marrow biopsy did not detect any leukaemia cells in the marrow; and a CT scan showed the fungal lung infection that I had since last August has cleared up.
My recovery continues to slow but steady - I am managing to do longer walks, mild exercises, and short rides on my bike. I do still have one or two days a week where I feel shaky and somewhat fatigued but the severity is less than it was.
I am still living a somewhat restricted life style because of the immune suppression and other drugs. So, still avoiding crowds and restaurants to prevent infections, can't go out in the sun, and I have to spend a lot time with my feet up to prevent swelling. Many days I find this a bit frustrating as I feel well enough to resume normal activities and enjoy the summer.
All the best
That's great news Ken. Really happy for you. Hoping I can share some good news too in the near future.
Hope you are still recovering well. My husband is now back at home and is at day 39 post transplant. His lymphocyte count dropped back to normal range immediately after the transplant but at about day 17 started climbing again. It is now outside the normal range (it's at 11, and normal range is around 2-4). The dr says it is definitely CLL cells. They hope by invoking graft versus leukaemia they can resolve this. I was wondering if you also still had a high lymphocyte count after your transplant ... and how long it took to return to normal levels.
It is disconcerning to see lymphocyte counts rise and hear that CLL cells are present but it might be somewhat reassuring that my counts did follow a similar pattern.
They dropped to 1.1 after transplant, climbed up to 10.9 around day 30, and then started dropping again. My Dr wasn't very concerned about these "high" counts and warned us right after discharge that CLL cells would likely be still be present and that it often takes a long time to completely eradicate them.
I did develop moderate GVHD around day 30 with skin rash and digestive problems but luckily the GVHD was controlled with some additional medications.
My GVHD seems to have had some anti-CLL effect as my lymphocyte count went back down to just under 4 by day 45. It has been in the 3.0 to 4.5 range since then. My Dr has always stressed the balancing between encouring graft-vs-leukemia and the risks associated with GVHD so invoking some GVHD may be the right treatment in your hushand's case.
Sending best wishes for your hushand's recovery,
Unfortunately my husband's transplant has failed. As he had myeloablative conditioning his own bone marrow hasn't come back hence he is basically getting by on transfusions. They are going to attempt a second transplant in two weeks. Can you please tell me what conditioning regime you had?
I am very sorry to hear this Marise - it is so disappointing.
I had a reduced intensity conditioning allo-stem cell transplant. The conditioning phase lasted 8 days with Fludarabine, Busulfan IV, and ATG - I didn't not receive any radiation treatments.
After the transplant, I was on Cyclosporine and Methotrexate as well as tylenol and dilaudid to manage symptoms.
My treatment plan might not be at all appropriate for your husband so please discuss with you Doctor.
My Doctor did mention that they have had patients with with two or even three transplants.
Sending best wishes,
Yes, the doctor calls it a mini transplant.
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