Emerging Consensus
Immediately after I finished writing and publishing my recent three part series on stem cell transplants, I came across this hot-off-the-presses review (July 29, 2009) “Blood” article by Peter Dreger et al. Dr. Dreger is a highly regarded CLL expert and I thought you should know what he and his collegues have to say on this very important subject.
The abstract of his article is below. (Send me a personal email if you want help locating the full text version of his article. It is detailed and very well written). I have also included several quotes from the Dreger article.
Much of the same ground has been covered in Part – I & II of my recently published transplant series, so much so that I do not think this article requires additional editorial comments from me. Nevertheless, it is remarkable that finally (!!) we are getting consensus on patient selection and timing of stem cell transplantation of CLL patients with aggressive disease. Heck, at this rate we might even be able to convince our insurance companies to cover the cost of these expensive procedures, by waving articles such as this under their noses!
Too many local practitioners (and even experts who have not kept up with the latest information) are ill informed about recent advances in stem cell transplants – all the more reason why we as patients have to be better informed on the subject, to be proactive in our conversation with our doctors and get a second or third opinion if our first line physicians are not familiar with recent developments on treatment of this “good” cancer that is all too often an incurable and killer cancer.
Please bear in mind “RIC” or “reduced intensity conditioning” allogeneic transplants are the same as “mini-allo” transplants.
Allogeneic hematopoietic cell transplantation for chronic lymphocytic leukemia: ready for primetime?
Delgado J, Milligan DW, Dreger P.
Department of Hematology, Hospital de la Santa Creu i Sant Pau, Barcelona, Spain.
The development of reduced intensity conditioning (RIC) regimens has increased the number of patients diagnosed with chronic lymphocytic leukemia (CLL) that are referred for allogeneic hematopoietic cell transplantation (allo-HCT). However, given the toxicity of allo-HCT, it should only be offered to eligible patients whose life expectancy is significantly reduced by the disease. Accordingly, the European Group of Blood and Marrow Transplantation has recently identified those patients in whom allo-HCT could be a reasonable therapeutic approach. In this review, we have evaluated the outcome of CLL patients undergoing allo-HCT, either after conventional or RIC regimens, in the context of current non-transplant strategies. We have also analyzed the most important predisposing factors that might interfere with the procedure as well as post-transplant complications that are particularly common in these patients. Finally, we have addressed the most relevant factors when deciding what patients should be considered for allo-HCT and the timing of the procedure.
PMID: 19641189
Quotes from Dreger et al:
You really should read the well written full text article. There are some very nice tables comparing efficacy of various conventional approaches as well as transplant protocols.
- Use of autologous HCT, which solely relies on dose intensity and does not appear to be curative in CLL, is rapidly declining with the advent of modern immunochemotherapy.
- 50% of CLL patients with early-stage disease eventually die of disease progression or disease-related complications, and almost all patients younger than 55 years at the time of diagnosis invariably die of their disease regardless of clinical stage.
- patients whose tumor cells have specific biologic characteristics, such as the presence of a deletion in the short arm of chromosome 17, not only have a poor prognosis, but also are more frequently refractory to conventional chemotherapy and might benefit from alternative treatment strategies.
- Even modern chemo-immunotherapy combinations, e.g. fludarabine, cyclophosphamide and rituximab (FCR), able to achieve objective responses in 95% of patients when given is initial treatment, have a long-term progression-free survival (PFS) around 50% at six years with no plateau in the curve. Furthermore, these impressive responses are costly in terms of early and late toxicity.
- patients with fludarabine refractory disease or 17p deletion have a poor outcome without transplantation, with a median PFS (progression free survival) of 11-15 months and a median OS (overall survival) of 12-40+months. Comparatively, the results obtained with RIC allo-HCT are apparently better.
- evidence that myeloablative conditioning is superior to RIC, even in younger or patients with fewer co-morbidities, is lacking, although a potential role of conditioning intensity in patients with refractory/bulky disease or HLA-mismatched donor-recipient pairs cannot be excluded.
- CLL was one of the diseases that benefited most from the implementation of RIC transplantation programs.
- Patients with bulky lymphadenopathy (> 5 cm) at the time of transplantation had a particularly poor outcome, with a 5-year relapse rate and PFS of 71% and 8%, respectively
- If a CLL patient is eligible for RIC allo-HCT and has a donor available, he/she should proceed to transplantation as soon as EBMT criteria are met.
- Patients who can expect a significant reduction of life expectancy under alternative therapies should be promptly identified and referred for allo-HCT before the disease becomes unresponsive to salvage treatment, provided there is a related or unrelated donor available.
- Because of the potent GVCLL effect, allogeneic HCT is a very powerful tool in the management of poor risk CLL patients, but there is room for improvement.
31 comments on "Mini-Allo transplants: Last words"
Chaya, can you elaborate on “EMBT criteria”? Thank you for amazing efforts!
It’s “EBMT,” and after looking at GOOGLE, I think it means “European Bone Marrow Transplant.” Maybe I can find what these criteria are after looking some more or ,maybe Chaya knows.
I ran across this update from the University of Nebraska Medical Center that it relevant. It claims to be “current as of August 18, 2009.”
http://theoncologist.alphamedpress.org/cgi/reprint/1/3/159.pdf
I don’t have time right now to read it closely, but it does have a table claiming that BMT for CLL patients is “controversial,” for younger patients, and is not standard therapy.
My impression without looking more carefully is that this paper, despite its claim to be current, is woefully out of date, especially for CLL patients. Just glancing at the dates of the papers used as References at the bottom, they seem to be using older studies.
I have asked Blood to email me a copy of the article Chaya is discussing here. They will do it for patients and have done it for me in the past. Just identify yourself as a cll patient, tell them who you doc is and where he is. Their email address is:
publishing@hematology.org
Chaya: Is it true that “and almost all patients younger than 55 years at the time of diagnosis invariably die of their disease regardless of clinical stage”. There are no true smolderers?
Ambrose
rg24824:
Burke is right, EBMT is European bone marrow transplant consortium (please note, bone marrow transplant is just an older name, means the same thing as stem cell transplant). The EBMT consensus was published in a full length article. Send me a personal email if you want to read it. THe EBMT consensus is pretty much the same as the guidelines described by Khouri et al in his latest paper (reviewed in Part -I of these series of articles).
Ambrose:
Are there any “true” smolderers? That is a bit of a trick question, and here is why. If a patient is 65 years old at diagnosis (remember, this is supposed to be an old man’s disease) and has a very indolent “smoldering” variety of CLL that hardly needs any treatment and lets him live for another 20 years – we are now talking of a man dying at 85 years of age. Surely that is a ripe old age and the patient has paid no life expectancy penalty because of his CLL.
But how about a patient who is 55 years old or younger when diagnosed? If he too has an indolent variety of CLL that lets him live for 20 years, we are looking at a patient that is going to die when he is 75 years or younger. With today’s increased life expectancy this man would otherwise have lived to 85 or more years. He therefore died because of his CLL.
Most doctors would consider a 20 year life span after CLL diagnosis a smoldering disease. The million dollar question is the age of the patient at diagnosis. A young man diagnosed with CLL will surely die of CLL, even if he has an extraordinarily slow moving “smoldering” variety of CLL. Young patients pay a huge penalty in terms of life expectancy – not so older patients who can afford to run out the clock.
Chaya,
Your reply:
Most doctors would consider a 20 year life span after CLL diagnosis a smoldering disease. The million dollar question is the age of the patient at diagnosis. A young man diagnosed with CLL will surely die of CLL, even if he has an extraordinarily slow moving “smoldering” variety of CLL. Young patients pay a huge penalty in terms of life expectancy – not so older patients who can afford to run out the clock.
Has me very disapointed, My husband was diagnosed last year at 48 years old and is in “watch and wait” un treated. We have been told by Dr’s and hoping that in the next few years they may come up with a cure for CLL. Your comment does not give hope to CLL’ers that have been diagnosed at a young age that they can possibly beat this…
Mary
Can anyone confirm that the last well known disease to be “cured” was polio?
Is there any hope at all that any cancer related disase will be “cured” any time in the near future? It seems that all we can hope for is for this to remain a “chronic” condition, that hopefully slowly takes our lives.
Sorry, I’m in a down mood today.
Blood has given me the article referred to above and stated that they got quite a few other requests, indicating to them that they all came from the same patient group. They have asked that we share it so as not to burden them with so many requests.
I will be happy to forward it to anyone here who wants it. My email address is:
bche0000@bellsouth.net
tabenck,
Younger people can survive transplants a lot better than older people, one thing your hubby has going for him. It has been a while since I looked at the statistics and they may have changed, but I recall seeing that the odds were much better for patients under 60 than after it.
You might want to look around for the studies.
Hi Mary and Fred,
As a young CLL’er (diagnosed at 47) I understand your feelings, as I have felt the same on many occasions. While none of us know what will happen with our own cases of CLL we can choose to make each day of life a rare and precious gift.
Lance Arstrong talked about how we are now in this special cancer group, how no one can really understand it no matter how hard they try until they actually live it. For some it can be a gift, that is to really evaluate what is most important in our lives and to proceed accordingly. We can chose to wake up each morning and be glad for another day. Certainly we all have accepted that we’ll never live for ever.
I am happy that today there is a cure for some of us. Maybe not for me, but maybe for you, certainly some of us will be cured though not all of us. That couldn’t have been said even ten years ago the way it can be said now. And certainly even us young Cll’ers have HOPE for a normal lifespan.
The internet has done wonders for us and has provided a medium for Chaya and PC that has made them heros to all of us.
We literally are in a golden time of Cancer elucidation and I have no doubts that this cancer as well as many others will be cured by the time my kids reach their 50s.
Our US of A continues to pump out 80% of new FDA accepted drugs. We can be proud that we are living in these times and that we can even be a part of it through clinical trials.
There are some causes that could help you besides this great work of Chaya’s. The Abigail foundation is trying to get access to successful phase I/II for patients like us who suffer lethal disease. It is being debated even now at time through our legilative process.Other causes such as Givepatientsafightingchance.com are fighting to open up the use of new scientifically based drug technology much liberally to lethal patients to further the cause.
If you’re like me, you have your bad days and your good days, it seems that we have to go throught the stages of grief over and over as our cll strengthens and dims our hope…..But never ever forget…………….. There is hope, and recently, there’ more hope than ever. That’s a pretty nice silver lining. You’re in my prayers,
Leo
Thank you Leo.
Leo,
Thank you for your inspirational comments. You’re in my prayers also! There is so much I would like to talk about on CLL but I know this is for comments and not writing a book. I am thankful for this resource, for me it is like an online support group.
Mary
Chaya – your comment: “A young man diagnosed with CLL will surely die of CLL, even if he has an extraordinarily slow moving “smoldering” variety of CLL.”
I assume you are referring to “surely die of CLL” IF there is not mini-allo, correct? And, since the odds of cure with mini-allo for younger patients are getting better than ever, your comment is for those younger patients who do not attempt a mini-allo at the precise timing?
Thanks
Mary
Mary, to make things clear, I do not make the rules of the CLL game, and the comment you are referring to is a quote from Dreger’s expert review, not a quote from me. I am merely the reporter clarifying the quote since a member asked about it.
For the record, I agree 100% with Dr. Dreger. Younger patients with a lot of life ahead of them will inevitably pay a penalty. Not so the older patient who can perhaps hope to run out the clock. I know this with my head and my heart. My husband PC was 51 when he was diagnosed. He did not live to see 60.
I do not mean to depress anyone, lord knows we need to keep our strength and spirits up to deal with this monster. But all the same, we also need honest and clear assessment of our situation from our doctors. Too many patients have paid for the “this is a good cancer, don’t worry your pretty little head about it” kind of crap, lulled into a false sense of complacency. CLL Topics and Updates is for patients who whould rather know than not know what they face.
There are no guarantees in this game. Heck, there are no guarantees in life either. We have to get past the “why me”, and the “its not fair” bit before we can see clearly (as best as anyone can) the lay of the land and make sensible decisions. I liked the Dreger and Khouri articles because they give honest and clear headed assessment of the therapy options open to refractory or aggressive CLL patients, especially younger patients. These are two of the top rated experts in the world of transplants. We desperately need expert reviews such as this in order to have more effective communication with our own physicians, with our insurance companies.
JJOHN:
You are right, the Dreger quote and my clarification of it are with reference to CLL treated only with conventional chemotherapy or chemo-immunotherapy. The consensus is clear. The only curative therapy we have out there for CLL is a allogeniec stem cell transplant.
That does not mean we won’t come up with a brand new therapy that provides deep and lasting remissions, and can be repeated at will to keep up in remissions until our natural life span runs out. However, there will always be a certain percentage of patients with aggressive deisease that will not respond, that will relapse even after the new miracle drug, and who become refractory to the drug. For these people we will be back to square one.
CLL is a cancer of the immune system, the very system that is supposed to protect us from cancers. Unlike fast paced cancers such as Hodgkin’s disease (where a certain percentage can be cured by means of high impact chemo), the very indolent nature of CLL makes it difficult to pin down and kill. The cancerous CLL cells are too much like normal B-cells and the “therapeutic window” – the drug dose needed to kill the cancer cells but not normal cells – is very narrow.
Improvements in care of CLL patients comes in hard won battles, progress made by inches and not by miles. Better prognostics, better drugs, better protocols, better prophylactic drugs to protect us against infections, better informed physicians that can give us straight advice and make us aware of the risks of second cancers, and last but not least, better transplants – that is what I hope for in the future. I have been around the block too many times to hold my breath any more for the silver bullet cure that is just around the corner and that will cure all CLL patients with no muss and no fuss. It may happen, but probabaly not in the lifetime of our members today.
My two cents.
The big questions is how to develop a treatment strategy based upon disease progression and over all physical fitness. I was diagnosed with CLL about 3 to 4 years ago at the age of 64. The diagnosis came by way of blood test as I had no real symptoms. Since I play tennis about 3 times per week for a couple of hours each time and keep my weight in control, I am in good physical condition.
My strategy is to try some type of clinical trial before resorting to the standard course of treatment. My thinking is along the lines that any company or research organization would like to work with an individual who has not had prior treatment and is in otherwise good health. The question is how to select the trial with the greatest potential for long term success. I certainly would like to hear from others in this regard.
My oncologist says to stick with phase III trials, but as I come from an R&D background, I am inclined to take greater risk. But how do you find a late stage phase I/II or even phase II/III that makes the most sense? I wish I had a good answer. Bob Warren
Chaya
If what you are saying is correct, then isn’t there a case for saying that everybody diagnosed at a comparatively young age (that includes me) should be offered the chance (rather than forced), probably sooner rather than later, of an allo-BMT. Without this they are almost certain to lose a big chunk of their lives.But present i believe the guidelines are far more restrictive. Unless people are very high risk, iIthink they only become eligible by relapsing from a course of therapy or therapies, by which time they might be in a less favourable condition/age to undergo a transplant. This logic would also seem to throw some doubt on the watch and wait strategy, as regards younger people. What exactly is the point of this?
As a side issue, I believe that your 20 year life expectancy projection might be on the pessimistic side for a number of people included the set of people who have mutated VH genes and other favourable markers. I have heard of people who have gone 20 plus years without therapy. But I realise these people are very much a minority, and, even if I am correct, this may be of ittle comfort to the majority of people with CLL.
Best regards,
Antony
ANtony:
No, I do not agree with your analysis.
First, I am NOT (REPEAT NOT) saying that everybody diagnosed at a relatively young age should be offered the chance of an allo-BMT sooner rather than later. Dreger and Khouri are suggesting (I merely report) that younger patients who also have aggressive CLL (17 p deletion, short remission after FCR, Richter’s transformation etc) consider early intervention with a stem cell transplant. And I do agree with that consensus.
Why not offer SCT to every young patient with CLL, independent of the nature of their CLL? For the simple reason that the risk of death and morbidity from SCT is still quite high. Why would anyone want to risk 30% chance of death (present mortality risks for perfectly conducted SCT with good match etc)and GVHD down the road due to the SCT, if their CLL is an indolent variety and they can manage with a series of chemo-immunotherapy regimens for a nice long time? (How long they can manage depends on exactly how smoldering their CLL is). It is a question of chosing the lower risk option, and for patients with indolent CLL a SCT is not the choice recommended. That is commonsense and I agree with it.
However, even indolent CLL with good prognostics poses some risk. Dreger and Khouri are saying younger patients, even those with good prognostics, will likely pay some penalty of reduced life expectancy because they cannot run out the clock, but in these good prognostic cases SCT poses much higher risk and therefore not the right choice for them.
When and if stem cell transplants become a risk free and trouble free procedure (not likely to be so anytime soon), then I can see the logic you incorrectly attribute to me, SCT for every young CLL patient.
Once again these are not my assessments. I am reporting the assessment of the authors (Dreger and Khouri). You may or not agree with their assessment, as you wish.
It is also important to understand these two experts are talking in terms of statistics, the general population of patients they have seen over their long careers. Will you be able to find the few exceptions to the rule they state, a CLL patient that lived three or more decades with no troubles due to the CLL and lived out his natural life span? Of course it is possible. But that is anecdotal and in no way takes away from the importance of what Dreger and Khouri are saying. A lucky patient may win the lottery. But that does not mean the majority of patients will. Are CLL patients better served by making their therapy choices based on feel-good anecdotal information or long term trends reported in these expert review articles? I guess it depends on your personality to some degree. Me, I like to do things with my eyes wide open.
As for giving comfort to CLL patients, I do try. But I believe it is also important to know the facts as best as they are known to us right now. And on that score I am quite willing to go on the record and say my vote rests with Khouri and Dreger.
Dear “Mary,” and others who either have cll or love someone who does,
I don’t know if it is ok to mention who treated me but I am going to do so as it could save someone’s life. Check out the leukemia clinic at MDAnderson in Houston, Texas. Dr. Michael Keating is one of the world experts in cll and has organized the 100 best cll docs “globally” to cooperate on finding the cure. He and his team offer the VERY latest and best cll treatments tailored for each individial patient. See his foundation: cllglobal.org (The CLL Global Research Foundation; all the donors are patients, families and friends of patients and NONE are pharmeceuticals or hospitals.) At least go for second opinion from MDAnderson, before you “watch and wait” with your husband. I was diagnosed at 48 (almost 12 years ago), I am female, and I have all the bad markers. I took very good care of myself by treating the “biological terrain” until I became quite symptomatic 5 years ago whereupon I “accidentally” found Dr. Keating (I live in the Northeast). I was treated (FCR3) and am still in CM. If/ok Chaya et al…WHEN the cll comes back, I will trot right back to Texas for the next treatment. Meanwhile get the new book: AntiCancer, a New Way of Life by David Servan-Schreiber (see his little infomercial on Amazon) do what it says, or at least start to learn the way of life, and go to Texas with your “young diagnosed” husband for a second opinion. If you can’t go to Texas then write to Dr. keating ans ask him what cll docs he recommends in your neck of the woods.
With Sincere Empathy and Encouragement to you and all. B. Karas
Dear Chaya
I’m sorry but i think I may have carelessly drafted my comment so thatit could possibly be interpreted as attributing a certain line of argument/logic to you, that in fact was my own. This was not all my intention but I do aplogise to you and others on this Board for posting something that may have been unintentionally misleading in that respect.
Antony
Chaya,
I would like your comment on any new drug/therapy in the pipeline which you think has a potential to keep the desease at bay for a longer period of time if not erradicate it completely and prolong the cll’rs life span. Is there any hope out there in the next few years considering what is in the pipeline?
Thanks
I find it difficult at times to read the facts and face them – but I’m so grateful that Chaya has her unique ability to “translate” all of this medical data for me to understand.
My husband was diagnosed 6 years ago and needed to start treatment that same year. He was part of a late phase FCR trial at MD Anderson Remission, however, lasted only about 3-1/2 years and he began treatment again earlier this year with Treanda – received 5 rounds, experienced a lot of difficulty especially in his 5th round, without remission. He will begin another clinical trial soon with an eye on SCT next year.
What continues to amaze me is how each person with cll is so different. Some people, like Barbara mentioned above, are able to go 7 years in the “wait and see” stage, others like my husband need treatment quickly. Some early FCR patients are still in remission 10 years later – pretty amazing. I recall a gentleman commenting on Treanda and how effective it was for him although not so for my husband. My point is that I feel it is most important to have a cll specialist you trust – a great local general oncologist most likely is not going to have the research info and cutting edge knowledge that is so desperately needed. Many of these specialists and facilities are located across the county and even if you’re unable to travel to one, you may be able to have a consultation. None of this is easy but knowing your doctor is up to date with all the latest info definitely helps.
Does anyone happen to know if most insurance companies, including Tricare, cover trekking across the country to one of the large CLL speciality facilities (i.e. MD Anderson where so many of you have either participated in clinical trials, or been patients receiving treatment) or others for a second opinion/consultation?
Antony:
No problem. I just wanted to clarify the logic once again since SCT decisions are so important and difficult to make.
mkali:
There is always hope. ALWAYS. I will keep my eyes peeled for new drugs, new clinical trials, review for you any that sound interesting.
But we need to understand the time frames involved. Drug discovery, early stage clinical trials followed by more advanced late stage trials, FDA approvals etc take a very long time. Time in this context is measured in decades. I think it is safe to say any really “new” CLL drugs will take at least 10 years to go from discovry at the lab bench through clinical trial bedsides to FDA approved sale at your local pharmacy. Patients, on the other hand, measure time in months or at most, years – not decades.
Will any brand new concept drugs not yet in the pipeline make it to commercial reality in time to help majority of patients facing therapy decisions today? I find that hard to see. Will there be new drugs down the road to help next generation patients, possibly our kids and grandkids perhaps? Most definitely.
What can we hope for, the patients facing decisions today? We can reasonably hope for incremental improvments, better combination protcolos, better infection protection, better prognostics so that we can make better choices, safer transplants, better understanding of what makes this disease tick so that we can be proactive in protecting patients from the many side effects of CLL. Slow and steady progress, but not a slam dunk overnight CURE for CLL – a slow moving ground game that gets us towards the goal but not a spectacular touchdown pass.
I will take each hard one victory as it comes, each inch of ground won at the expense of the brave volunteers participating in clinical trials. And I will be happy thinking how much all this is contributing to saving the lives of our children and grandchildren who might be stricken with this awful disease. Remember, CLL is a familial cancer. Our kids are at an increased risk. Helping them is as important (if not more) as helping ourselves.
Nancy,
Our experience has been that it really just depends not only on the specific insurance company but also the specific plan you may have. Initially 6 years ago our Blue Cross plan covered out of state but when we changed to an employer’s plan, it was a Blue Cross “HMO” type that wouldn’t allow us to travel out of state. We were fortunate though that our cll specialist at MD Anderson developed the next treatment strategy over the phone with our local oncologist.
No longer with an employer plan, my husband is now on a Louisiana State Plan – very high monthly premiums, high deductible and co-pays – but once again, we’re able to go out of state as MD Anderson is on that plan. Maybe you don’t have to go across country – there are facilities that are part of the cll research group. Geez, never thought we’d be counting the days until my husband turns 65 and Medicare eligible – next year!
Friends,
This is mostly for those like me under 55 at time of diagnosis.
Transplants move your risks upfront. You are guaranteed morbidity, you hope for just the right amount of misery (GVHD), and pray you sidestep the significant TRM. At very very best, you give up 1/2 a year a life, but 1-2 years is more likely. That is if all goes well.
In return, you get a coin toss chance to outlive this monster.
For me, the choice was easy. With my platelets falling (likely my nasty ITP) is back, and my nodes showing INDOLENT growth, the writing is on the wall for HSCT, the sequel, for me. This time with a bigger chemo hammer. I have no hesitation. Choose life ( thank you Moses) not wishful thinking.
Chaya is right about the miracle drug being a decade away, even if it’s in test tube today. There is really only one way that the non transplant cure can save anyone reading this post: in less than 10 years from now. You bet the farm on the right horse and get lucky, or in other words you choose the right clinical trial and you are randomized to the winning side. Those who got on theorginal Gleevac trials with CML chose right and are alive today because of it.
That so depends on the magic potion coming to fruition, and you having the pass code for an early ticket.
On the personal note, I start IVig tomorrow to jump up my platelets. BMB yesterday with Dr. Kipps, but today, despite both, fool that I am, I went ice skating.
BTW, Kipps is not a big transplant fan. He’s noodling s a Revlimid and vaccine approach to get the immune system goosed up again. I hope it works.
Stay strong
Brian
bkoffman.blogspot.com
Fellow CLLers,
Just to pile-on with Brian’s comments above about high risk younger patients with my personal experiance/observations—–remember I have no medical background!!!
I was 46 when diagnosed (large spleen, CD38+, normal Karo & unmutated) and had my ~8lb spleen laproscopically removed and bought 3 years of chemo free living before my classic CLL symptoms all seemed to kick into high gear three months ago. Well I got the non-prior chemo or non-EBV Richters diagnosis and am currently undergoing round two of EPOCH-R therapy enroute to a transplant center. The reponse has been great so far and although I am not a classic Richters case, I am voting with my feet because I have young kids, a mortgage to pay and do not see a cure out there in time for me to run out the clock!!!!
I am blessed with a primary Doc that gives a strong opinion for the SCT! I have visited several other Docs for their second opinion and they all agreed with the recommendation too, however each did it in a “milder manner.” I discovered you have to listen closely to how they/Docs answer your questions. The old “if it were your brother” question does not get the strong response/endorsement you are looking for. What you get are subtle answers to your hard questions like: “SCT is a medically sound decision for your case” or “SCT is a resonable course of action, if the risks (good donor, etc…) are acceptable.” Even these answers are usually offerred (buried) after a lot of medical discussions. I had to listen carefully, and the circle back with the Docs to get them to verify the answer suscinctly!
The decision on a SCT is personal, and it boils down to a risk verse gain analysis—there are no “for sures in the CLL game” and it seems many of the Docs do not answer important questions as strongly or loudly as we would like—to make it easy for us to decide about a SCT!!!!
Thanks again Chaya for bringing this important discussion up to us CLLers, because the more informed we are—–the better decisions we will make about our individual treatment plans!
With all of the valuable and important information I’ve been reading regarding the current SCT topic and my own sudden “lick into high gear” as VADAB said, I wonder how soon I should be looking for a donor match within my family members? If and when the time comes that I will need a SCT I would like to know if either of my sisters are a match. How do you go about having this done? I was diagnosed in February, at age 57, although my oncologist said she would have diagnosed me a year earlier had she seen my labs then. Supposedly, I am “smoldering,” but doesn’t look like I’m going to stay that way for long. Even if I was lucky and did smolder away for a while, I don’t think it would be too soon to know if I had a sister at my disposal to fill the job. Sorry, but 20 years, if I’m extremely lucky, just doesn’t seem long enough. I’m pretty sure most of you feel the same way. Please don’t read this as a “poor me, why me” statement. I’m over that hump, and am looking to the future. Since for us Cllers a SCT is the only hope of enjoying the LONG lifetime we were supposed to live, this donor information is crucial. Any input would be appreciated, or reference to one of Chaya’s archives covering this topic. Thanks everyone, Nancy
Nancy:
Look up an article titled “Matching made easy” on http://www.clltopics.org.
Basically, your doctor has to request the HLA matching test. It involves getting a tube (or two) of blood from you and each of your siblings sent away to the transplant center for HLA testing. Sibling match results can be obtained quite quickly, within a couple of weeks. What takes a lot longer is trying to find a MUD (Matched Unrelated Donor) if you are not fortunate in having a well matched sibling. As you can imagine, the process takes even longer if you happen to belong to an ethnic minority and the search has to be brodened to donor banks worldwide.
It is also important to know that if you hear there is one or two MUD possibilities that does not mean the deal is done. Donor registries are not always up to date, donors move away and leave no forwarding address, change their minds, get sick themselves, die etc. Typically, if one is lucky enough to have half a dozen or more “maybe a match” donors this may whittle down to an actual donor when rubber meets the road. Transplant centers will also not contact the donors and do the detailed testing (the first pass match testing is done at a crude level, not sufficient for an actual match)until the patient is actually ready for the transplant.
The whole process of finding a well matched MUD can take several months and a good percentage of patients who need a transplant never find a suitable MUD. That is where umbilical cord blood stem cell transplants come in. Please refer to our articles on the subject both on this site as well as the original clltopics.org website.
“almost all patients younger than 55 years at the time of diagnosis invariably die of their disease regardless of clinical stage.”
That’s some grim shit.
Quoting
2spleenSeptember 23rd, 2009 at 8:23 pm “almost all patients younger than 55 years at the time of diagnosis invariably die of their disease regardless of clinical stage.”
That’s some grim shit.
Well im only 49, often feel like 79 with my Crohn’s problems & now i have to deal with this CLL diagnosis too.
I dont know whats worse, my 25 odd years of Crohn’s & numerous bowel resections or this new CLL disease which seems to be a watch & wait.
How do people cope with “watch & wait”, i dont feel well enough to work now let alone in a few more years & am seriously looking at making the huge decision of a livestyle change. ie moving to a cheaper property on the coast to get rid of the mortgage.
I dont think its fair on my partner to have to deal with my health deterioting & us worrying about how we keep on living where we are now.
She says its what i want to do, i say its what we need to do to plan ahead, but how far ahead do you plan.
A month ago i was just planning wether i had a quiet 50th birthday away just the two of us, or as family would prefer a big 50th party in January.
Now i’m asking brothers/sister if they would be prepared to donate Bone marrow as & when i require it some time in the future :(
Dave
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