Hi everyone,
I am a Cll’er on w&w since December 2016 and my wbc is at 115. My oncologist is saying that my w&w may be at its end within 2 years. So I want to be proactive and maybe look at stem cell therapy. Has anyone been on that path before treatment ? Any comments on stem cell therapy for CLL ?
I appreciate this forum for all the good advice of our community.
best regards
Hi Cgobies,
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While a SCT is the only potential cure for CLL, the success rate is low. The general rule of thumb is that ~30% are successful in curing CLL and giving the patient a new immune system.
Unfortunately about the same percentage (~30%) develop GVHD (Graft vs. Host Disease) where the old and new immune systems battle and cause permanent serious / debilitating side effects.
Another 30% have their old immune system destroy the new stem cells and that battle takes weeks or months and requires intensive care hospitalization to prevent the fate of the last 10% who do not survive.
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There are some clinical trials and experimental approaches that are trying to change the above percentages to improve survival rates and lower permanent GVHD rates. However CLL still seems to have the poorest results vs. other bone marrow disorders, so targeted treatments and CAR-T are usually tried first with SCT as the last resort.
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Len
Hi Len,
I am looking at SCT as an IV treatment in order to strengthen my immune system. I am not expecting a cure but positive results for immunity. What do you think ?
Regards
By the way , my source is stemcelltreatmentclinic.com...
Hi Cgobies,
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I am not medically trained, so I suggest your consult your CLL expert doctor
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IMO - I would be suspicious of "Stem cell therapy now exists, and R3 Stem Cell International in Tijuana MX (Mexico) offers several treatment options depending on the patient’s condition needing therapy. The most powerful and safe options being offered include donor material obtained after a scheduled c-section, which has eliminated any of the previous ethical concerns when there was fetal involvement"
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My CLL Expert doctor (at Weill Cornell NY Presbyterian) shares clinical space ( an entire floor of the hospital wing) with several world class experts at SCT, often used for patients with MM (Multiple Myeloma), MDS (Myelodysplastic Syndrome) and similar conditions that are nearing total bone marrow failure. I
believe that intensive treatment with powerful drugs / chemo is used prior to the actual infusion of stem cells to wipe out the patient's old bone marrow and insure that the old / existing immune system does not destroy the new stem cells.
Recovering from that pre treatment seems to be the life threatening issue- since we cannot live without functioning bone marrow so the new cells / graft needs to "take" quickly and expand prolifically.
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Len
From your source; "Stem cells maintain the potential of turning into several cell lines including muscle, cartilage, tendon, organ tissue, bone and more." There's no specific mention of haematological stem cell lines and only a potential that they may work for other conditions.
You've had very good advice from other members, which concur with what I learned at a workshop on stem cell transplants for haematological conditions. That one of the facilities is providing this service is just across the US border - not in the USA, would make me very suspicious that there's poor evidence for the medical effectiveness of what is on offer. I'd say little has chanced since this 2012 article; Stem Cell Treatments: 6 False-Hope Warning Signs
- Unproven, Risky Treatments Mislead Patients to Seek Cutting-Edge Therapy
webmd.com/a-to-z-guides/fea...
This extract from The European Blood and Marrow Transplantation Textbook for Nurses: Under the Auspices of EBMT [Internet], explains what's involved in the recommended stem cell treatment protocol for CLL
ncbi.nlm.nih.gov/books/NBK5...
"In allogeneic HSCT, the aim of conditioning is to:
- Kill tumour cells (in malignant diseases).
- Eradicate existing bone marrow tissue (in order to provide space for engraftment of transplanted donor stem cells).
- Suppress the patient’s immune response and minimize the risk of graft rejection of the donor HSC (Maziarz"
With the dramatic improvement in CLL treatments, the use of stem cell transplants has greatly reduced. Nowadays, they are typically reserved for young patients with very poor markers who have aggressive disease. As covered in the extract above, first you need to wipe out as much of the CLL as is possible, then wipe out your immune system and replace it with a transplant. Hopefully that transplant takes and also eliminates any remaining traces of CLL - while not giving the patient Graft vs Host disease, which can sometimes be challenging to live with for the rest of your life.
You presumably have good markers, given your time in watch and wait is going to be around 8 to 9 years. While you haven't shared your markers, your reasonably lengthy watch and wait augurs well for good remissions from standard treatments. I've attached figure 2 from the US NCCN - National Comprehensive Cancer Network's CLL treatment guidelines. This covers the recommendation for after your first line of therapy, which with modern treatments are more able to be repeated than the older chemotherapy choices. You'll note that SCTs, along with idelalisib, CAR-T and clinical trials are only recommended after BTKi and venetoclax therapies are no longer effective.
Neil
I spoke this afternoon with the CTOAM organisation in Canada and they concur with your assessment. I am very happy to have written my concerns because I will go to sleep tonight with a lot more knowledge and peace of mind.
I can now say that this forum saved me from a risky therapy. That is huge.
Thank you all for contributing.
My warmest regards
I think you are confusing a Stem Cell Transplant with this "stem cell therapy infusion." I am not aware of stem cells being used in CLL outside of a transplant, although someone may have doing a pilot study somewhere since this article speaks about promising results in lymphoma and leukemia. IDK if these are animal or human study tesults.
ncbi.nlm.nih.gov/pmc/articl...
Mainstream CLL use is currently as part of a transplant, not a standalone infusion.
mayoclinic.org/tests-proced...
Good point Sofia. That first paper reviews the use of stem/ stromal cells merely as vehicles to efficiently deliver a therapeutic payload to the tumour. References # 21-24, re blood cancers, all describe studies in mice. This approach does seem to hold promise, and perhaps we'll see clinical trials soon.
Hi Len:
What typically happens to the 30% in your quote below? What percentage of these cases are ultimately successful?
“Another 30% have their old immune system destroy the new stem cells and that battle takes weeks or months and requires intensive care hospitalization to prevent the fate of the last 10% who do not survive.”
Thanks,
Mark
Hi Mark,
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I believe that 30% is considered a transplant failure- that after the hospitalization & danger is over, the patient is back where they started- with CLL and no improvements.
If I recall correctly - Dr. Brian Koffman had that result from his SCT about 10 years ago.
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Len
Very helpful response.
If you are treatment naive, I would not look to stem cell treatment as your 1st line course, at least not with the data and success rates of this treatment as of today. Maybe in 2 years, when you need treatment, the option might be a better one.
Unfortunately 65 is generally considered a cutoff age for successful transplant. I know in my region, they aren't done on the elderly. One needs a certain level of immune system functionality for success, and as we age our weaker systems are less likely to repond to the treatments.
I had this discussion earlier this year with my specialist, he said being in a remission would be better than if ones disease was active, and if I was going to have one I needed to start the prep (I will be 65 next month). I decided not to do it.
Hi SofiaDeo: Is CAR-T a better option for you? It’s interesting that SCT as a treatment option doesn’t typically work after 65 but CAR-T remains an option.
Best,
Mark
It's not that SCT "doesn't work", in older patients per se. The studies show it does technically work, and is used in patients up to around 70. However, when one takes into account study data *ends* after a set time, a death or infection that occurs outside of the monitoring period is not considered related to the transplant. My specialist group having a cutoff of 65 is more their preference, highly specialized places can and do take older patients. ASH states that the studies indicating 60 as a cutoff are older(1990's) but I am stuck with what my region is willing to do.
ashpublications.org/blood/a...
We know some people's immune systems don't completely recover after full body chemotherapy regardless of age, so the older we are, the higher the risk of adverse events. CAR-T can involve standard chemotherapeutic wipe of ones immune system. So the risks for those procedures is also higher the older one is. My specialist is not in the group that does CAR-T in my region & I don't know if there are similar age prohibitions. Partially ablative procedures are less taxing on us than fully ablative ones, and I know people are studying differences between the various chemo agents used during the ablation procedure. Since I am able to get control of my variant, with minimal SE's, I don't see a need to "go for the cure." If this wasn't the case, I am sure I would be looking to do SCT or CAR-T.
Hi SofiaDeo: I’m a little younger than you and my disease has been relatively well behaved but I’m on the same road as you so to speak. By that I mean given my relative youth (that feels good to write 😀) unless new CLL treatments are developed I’ll likely run out of choices and be left with the SCT or CAR-T options. While partial ablative procedures are less taxing than the SCT and CAR-T at some point aren’t these our only choices?
Best,
Mark
Sorry about the confusion. In preparing for a SCT or CAR-T, one is treated with standard chemotherapy to wipe out cells in our body in preparation to receiving stem or CAR-T cells. Depending on the depth/type of pretreatment, the procedure is considered partially or fully ablative, and so they are a part of SCT/CAR-T, not a separate treatment regimen. There have been pros & cons to which pretreatment to use for SCT. I am not versed in CAR-T and have no knowledge of the types of pretreatment, so can't comment on if the pretreatment is partially or fully ablative, or if there are choices.
Getting back to your question, if one tries all other treatments and fails, the only thing left at some point will be SCT/CAR-T. And ideally the healthier one is, the better the outcome. So you are correct that at some point, it *may* be the "only thing left". However, with the ability to test for uMRD and an understanding of the possibility of resistance, the newer thinking of "tamp it down into low levels, go off the drugs before resistance develops, then redo the same treatment" may get people decades of disease control without having to do SCT/CAR-T. And new drugs with new mechanisms of action are in the pipeline, so there's that. When I was diagnosed, I did a clinical trial because at that time the only thing recommended with my genetics was SCT and I didn't want to do it. I didn't feel like I had the support and resources that IMO were needed to get a great outcome.
Has doc brought up stem cell therapy? Seems a little drastic at the outset when you have other approaches available 1st, like BTKI's, etc. A friend's wife with AML has undergone chemos & 2 stem cell xplants & it/they are demanding processes.
I asked Dr. Michael Keating at a Patient Power Conference at MDA, "Why not proceed with a stem cell transplant while I am young enough to endure it?" His response was basically that he considers the stem cell transplant as a last resort because it often ends with fatal consequences.
You can follow Brian Koffman MD's failed stem cell transplant - April 2008 - bkoffman.blogspot.com/2008/04/
This is the big point with the transplants, after one is X amount of time post transplant, any death or infections leading to death, are *not* considered in transplant statistics. Since some people have permanent severe impairment of their immunity, death by infection is a possibility. One of my grandmothers had leukemia, and had "successful" treatment, but died from an infection afterwards. I am not confident that my family genetics would put me into the "more likely to recover from transplant" since I have personal history of a grandmother who died after cancer treatment. That was on my dad's side, and there is also cancer on my mom's side, her cancer directly killed her. My maternal grandmother also had cancer; I do not know the details of how it impacted her death but it occurred a few years after diagnosis. So for me personally, I think transplant is not something I want to attempt.
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