Friday, February 13, 2009

Another transplant twist, in which I learn my chances of getting a good donor match

Many months after my visit to the NCI/NIH to discuss a stem cell transplant trial, I received a call from the clinical nurse in charge of finding donors for trial participants. In the 15 or so minutes we talked, Jennifer Wilder could not have been more helpful.

While I was rejected for the trial, one of the benefits of applying for it was that I was able to get a much better handle on my donor match situation. Before the trial, all I had to g
o on was a preliminary search of the National Marrow Donor Program (NMDP) database, which indicated there were 22 potential 6/6 matches at low resolution on the microscope.

That’s like looking through Mr. Magoo glasses and saying there are objects in the sky twinkling at night without knowing which are stars, which are planets, and which are airplanes passing by.

For their part, the NIH needed to do enough searching at high resolution to see what the prospect of a 10/10 matched unrelated donor would be, as that level of match is required for participati
on in the trial. It is also generally accepted as the desirable standard at all transplant centers. Their effort would have cost me thousands of dollars had I been paying for it out of pocket.

* * *

More on the results in a minute, but first a little background:

The bottom line when it comes to adult stem cell transplants is what sort of match y
ou can get, and not all matches are created equal.

Sibling matches, for example, can mean less Graft vs. Host Disease (GVHD), which is what can happen when your new immune system comes into contact with your old one. But this also tends to mean less Graft vs. Leukemia effect (GVL), in which the new immune system takes on the CLL cells. Engraftment is harder since the CLL cells stick around, and relapse is more likely. Statistics show that if you are rolling the dice on a cure, your brother’s or sister’s stem cells are not the best way to go.


Matched unrelated donors are preferred -- those wonderful people who volunteer to help others in nee
d. You’d think that out of some six billion people on earth there would be more than 10 million such donors, but those who need transplants are small in number and the need for donors does not get much publicity. (That prospective donors are often charged a small fee for testing does not help; one wonders what would happen if people were paid a small fee to agree to enlist, but that is another post for another day.)

A 10/10 match -- or better -- means the stage is set for a pretty good chance of engraftment and possibly cure. At the low end, Dr. Steven Pavletic of the NCI told me, an 8/8 match is acceptable. But it’s not desirable, and it’s something I would think twice about if it were all I could muster.

Then there’s the cord blood transplant, in which the rules change a bit: The level of match is not as important since the stem cells are pretty much unformed and adaptable to your system. Double cord blood transplants are a new thing, performed in adults at only a few centers. Dr. Paveltic described them as being riskier than unrelated, which indeed appears to be the consensus as of now.

A word is in order here about the mysteries of HLA -- Human Leukocyte Antigen -- typing, the complexities of which have caused smoke to come out of my ears as well as several other orifices on more than one occasion. For those of you who want to focus on the locus, the following are some links that provide further information, one from Wikipedia, one from CLL Topics and two from the NMDP, the first one for patients, the second one for professionals. (And aren’t we patients professional researchers at this point?)

* * *


Despite the statistics on CLL outcomes, the reflexive procedure at transplant centers seems to be to look for a sibling match first and then to look for an unrelated donor if that fails. I’ve got two brothers and a sister but each of them is a half-sibling. All are willing to donate their stem cells to my cause, none of which would be helpful. So thank you Rick, Dan, and Julie, but a sibling match is out.

Wilder told me that they found 15 6/6 unrelated matches at high resolution, looki
ng at loci A, B, C, DRB1, DRB3, and DQB1. Two potential matches “would probably fall off for ethnic or other reasons," leaving me with a pool of 13.

(Ethnicity is important in all this, and I am a bit of an odd combination. My paternal grandparents were Russian Jews, who escaped the rule of Tsar Nicholas II and came
to America shortly before the Russian Revolution. My mother was adopted, which I only learned following her death in 1977; after much searching, I narrowed her birthplace to the Irish immigrant community around Crown Point, New York. So I am something of an Irish Jew, evidently, which explains my demented sense of humor but which also puts me in a distinct ethnic minority.)

Of those 13 potential matches, they had additional data on four -- enough to get close to determining a 10/10 match. Of those, there is a 50% chance of one perfect match, Wilder said. The other three would be about a 10% chance of a 10/10 match. What lurks in the “mystery nine" would have to be determined through further testing.

Beyond this, there were 10 mismatched donors, probably only one of which might be as high as a 9/10 match.

Wilder said the odds of a successful transplant with a 9/10 match are “fairly decent.” The rule of thumb is that for every mismatch, successful outcomes drop by 9%.

A mismatch of one number at a locus is called an allele mismatch, she said, which is what I appear to have in three places when compared to the usual results for Caucasians. A mismatch of both numbers is called an antigen mismatch. Wilder said that an allele mismatch is not as bad as an antigen mismatch (fun reading here.)

“Do some mismatches matter more than others?” I asked.

The consensus is “yes,” Wilder said, but nobody agrees on what they are. For example, studies suggest that a mismatch at locus A-0205 is important but these studies are from Japan and could be important only within the confines of the Japanese ethnic group.

I have three “less common alleles,” she said, which means “a less common combination of numbers.” But she de
scribed my alleles as “nothing that’s all that rare.”

Obviously they’re rare enough to turn finding a 10/10 match into a bit of work.

One of my uncommon alleles is that A-0205. If you HLA-type 100 Caucasians, most will have 0201. Another uncommon allele that I have is at locus DRB1; I have 1305, and most would be 1302. Each of these counts as a mismatch. So a mismatch on the A-0205 alone means a 9/10 match, a mismatch on both the above means 8/10, etc. Transplanters do have an order of preference for where the mismatches are, but I didn’t get into the details.

Wilder said the bottom line for me is that with continued searching and typing of more donors, I would have a pretty good chance of finding a 10/10 match, with the prospect of a 9/10 in the background.

She searched databases worldwide. Wilder noted that people do join databases and a search in another year or tw
o could “pop up some perfect matches.”

Which was polite of her to say, but my one perfect match, if there is one, could also get hit by a truck.

* * *

I have a case of CLL in which nothing is easy. I don’t have indolent disease. I don’t have horribly aggressive disease. I have progressing disease with fairly mild clinical symptoms, if you discount episodes of hemolysis due to AIHA, which isn't exactly easy to do. But my marrow is still pretty healthy, I don't have B symptoms such as fatigue and night sweats, and I am not prone to frequent or severe infections.

Alas, I have three out of four poor biological markers -- IgVH mutational status, ZAP-70 and FISH are all bad; CD38 remains good.

December's FISH test showed no new deletions beyond the 11q, and my 11q deletion appears to be stable when compared to results from 2007 -- the deletion shows up on just over half of cells tested. It also appears that
I still have some ATM (programmed cell death) functionality. ATM is located on the long arm of chromosome 11, hence the tag of 11q. (It is not present on the short or “p” arm of the chromosome.) Monoallele deletion -- which is what I have -- means the relevant bit is broken off of the long arm of one of the set of two chromosomes #11. Biallele deletion means that both of the chromosomes 11 have lost the ATM gene. It stands to reason, and appears to be born out clinically, that the monoallele deletion is the half a loaf that is better than none; how long it will stay that day, given the vagaries of clonal evolution, is anyone's guess.

The downside of my 11q is that I also have extensive abdominal lymph nodes, as my CT scan of last month made clear. They're not impinging on anything important, but they have grown into a 13 cm by 15.5 cm mass, helping driving the disease, and a mass of that size is an indicator for treatment, according to the NCI guidelines.

I know where all this eventually leads -- transplant or die -- but it is not a pell mell rush, and so there is a little wiggle room along the way in terms of the what and when of treatment.

And what I learned from Wilder is that I’m not on Easy Street when it comes to finding a 10/10 donor, either. Still, she made it clear that there's a realistic chance. So let’s hope the one or maybe two or three people in the world’s donor databases who qualify enjoy quiet evenings at home with their air purifiers and heart-healthy diets.

Is this a slim reed on which to plan a long-term strategy?

The way I see it, the alternatives do not change because of the donor match situation. Basically, I can ride along doing chemo until nothing works on me anymore and I earn my scarlet “S” for “Salvage patient,” at which point I can make my peace with the world and go out gracefully.

Or I can go for a transplant at the best level of match I can get, even if it is not ideal: 9/10 perhaps, or cord blo
od, or maybe that 10/10 after all.

There is an anonymous quote I ran across that sums up my opinion: “There are always two choices. Two paths to take. One is easy. And its only reward is that it's easy.”

Dragging out the chemo is the “easy” choice here, but in a way it is also the hardest. It is a personal statement that “I accept that CLL will shorten my life, and that I will live three, five, maybe eight more years.”

Making the “hard” choice to go for transplant is saying, “I know there is a reasonable chance that I could be cured of CLL and I am willing to accept the risk of getting killed in the process, or living with inconvenience afterward, in order to have a longer life.”

In my humble opinion, and it is only that, so long as transplant is a viable alternative with a reasonable chance of success, the “easy way out” is akin to writing a suicide note.

* * *

But knowing that finding a perfect match will be a bit dicey does make me wonder about the advisability of jumping sooner rather than later. In making this decision, I am juggling a lot of balls in the air, or twirling a lot of plates on sticks, or tap dancing on the backs of several hungry alligators -- pick your metaphor.

As Dr. Pavletic told me, people don’t get healthier with age. I have no comorbidities (other cancers or diseases) that might reduce my chances of success. My heart and lung function are good. I am still chemosensitive, so my chances of getting a CR, or close, are decent, though hardly guaranteed.
There will never be a better time than now, Pavletic said. As a reminder, he estimated that I have a 70% chance of a cure or long-term remission, perhaps a 15-20% chance of death, based on a 10/10 match. This tracks with everything I have heard for a patient in my situation.

Then again, despite my CLL and AIHA, I am enjoying pretty good quality of life. I’m 52. I can wait until I’m 55 or even a bit older before taking the leap. This guarantees me a few more years, time to enjoy life before risking that life. What I risk in waiting is the arrival of a comorbidity, watching the disease grow more stubborn and resistant to therapy, things that might ultimately reduce my chances of transplant success. What I gain in waiting is knowing that, barring a flying anvil with my name on it, I will probably be alive in three years. I am not risking a one in five chance of death.

This is a tough one. Push is starting to come to shove. Your thoughts are welcome.

21 comments:

Carl said...

David,

What a wonderfully clear description of a very complex situation!

I resonate with your situation, because I've been through the preliminary workup for a stem cell transplant for my indolent non-Hodgkin lymphoma, although the indolent nature of my disease means the docs aren't talking about a transplant with quite the sense of urgency that yours are.

Even so, there is urgent and there is urgent, and your case evidently falls in a sufficiently gray area that making the decision is complex and difficult. You have my good wishes and prayers as you navigate this featureless terrain.

Carl

Carl said...

I just wrote an appreciative blog entry of my own, in reference to your blog:

http://www.cewilton.blogspot.com

Anonymous said...

Hi David,
Of course, you also have to factor into the equation the possibility of new and better treatments in the next few years. That's already happened once in the last decade with the advent of Rituximab, and that seems to have saved my butt.
Best,
Denny

David Arenson said...

There are advances in CLL treatment, but they are slower than my disease and none of them are going to do more than help around the margins. They are not significant enough to guarantee that chemotherapy alone can carry me through a natural life span.

I'm not complaining, mind you. Any new bullets we have can at least wound the beast. Both HuMax-CD20 and Revlimid have shown promise; HuMax (ofatumumab; "Alzerra") may finally get FDA approval this year. Revlimid is in trials but can be used through the manufacturer's program. Both can be used to buy time.

The thing with buying time is that the disease does not stay in stasis. It worsens, even with therapy. While one may have a temporary reprieve, the underlying disease tends to grows more resistant to treatment. Its effects on immunity and the body worsen.

So there comes a point, in my view, where there are diminishing returns even with new drugs. Unless someone comes up with a Gleevec-style "wow" drug or therapy, and I don't see that on the horizon, the only way out of the mess still appears to be a transplant.

But the new drugs can buy a little time -- their presence is one reason why I am thinking I might be able to wait a bit on the transplant.

And similarly, of course, advances in transplant methods occur as time goes on. Cord blood is safer today than it was a few years ago, for example. So that could be an advantage in waiting a little longer before going to transplant.

Each case of CLL is individual and responses can be idiosyncratic. Denny, you are one of the very luckiest of patients. I can tell by the way my disease behaves that I am going to need to take more chances, play a higher-risk game, if I am to get to the same place as you.

Anonymous said...

David and readers,
I feel morally obligated to once again reiterate my theory that intense physical exercise provokes biological changes that help keep
CLL in check.

I didn't know it, but I had CLL as early as the 80s. I was very fit then, and trained hard for triathlons. In 1990 I moved to Florida and for various reasons my training regimen fell off to basic maintenance levels. A CBC taken in 1991 (I was age 45), when I had a kidney stone, shows several abnormal counts indicative of the disease, and the doctor wrote a note (unbeknownst to me) to follow-up on that after the kidney issue was resolved. This was never done.

By 1996 I had been ignoring a constellation of weird symptoms for at least a year. I had a routine colonoscopy one morning, they found a gigantic spleen, I was sent for more tests and by the end of the day it was clear that I was in big trouble, though that trouble wasn't verified as Stage IV CLL until a week later, on my fiftieth birthday.

I had the six-month course of fludarabine and was put into remission. I did not go back to the doctor for three years after that. Nor did I exercise, because I felt that my body needed all the energy it could muster to fight the disease.

After three years I went to my G.P for a case of stubborn sinusitus. She saw instantly that I was terribly anemic, sent me to the hem/onc, and a CBC showed me in such bad shape that they insisted I go right to the hospital for two units of blood. I refused, not wanting to admit I was that sick. (A week later I had to admit I was that sick and got the transfusion.)

I was once again put into remission, this time with fludara. But this time I started training hard again on the bicycle, and within two years I came in second in my age-bracket in the Florida State time-trial finals.

I've continued training hard since then, and almost ten years after being put into remission for the second time the doctor sees no trace of CLL (we have not done a bone marrow biopsy).

So here's the pattern. I had CLL in the 80s, but it did not manifest itself until I let my level of fitness decline in the 90s. I was put into remission and did no exercise at all. I started exhibiting symptoms again in about a year, but didn't go back to the doc for another two years. I was put back into remission and this time I started hard workouts again. The disease has been kept in check since then.

There is plenty of medical data about the physiological and immunological changes generated by hard exercise. My own case is anecdotal, but I think the pattern I described is indicative of something very important going on. This ten-year remission after being Stage IV twice within three years is probably one in a million. But probably only one in a million adults my age train as hard as I do. That could be just a coincidence. But I don't think it is.

When I was first diagnosed with CLL and given an estimated 3-5 years left, one of my strongest emotions was frustration. Most problems can be attacked in one way or the other, but here I had a mortal problem that I felt helpless to do anything about. I told my wife, "If the doctor told me that I could get better by crawling from here to California, I'd go right to Sports Authority and buy several gross of kneepads and gloves, and I'd crawl out the front door tomorrow morning."

Now I don't think we're all as helpless as I thought. You don't have anything to lose. Even if my theory is totally wrong, building up your fitness level as much as you are able will still make you stronger, healthier, and more optimistic. But if I'm on to something, ...
Denny

Anonymous said...

The beginning of healthcare rationing...you'd better factor this into your decisions:

U.S. to review effectiveness of treatments

Stimulus will fund research on what works best against specific illnesses.

By ROBERT PEAR
New York Times
Posted: Monday, Feb. 16, 2009

Democratic presidential candidate Sen. Barack Obama speaks at the 2008 National Urban League Annual Conference in Orlando, Florida, Saturday, August 2, 2008. (Joe Burbank/Orlando Sentinel/MCT)

MORE INFORMATION
obama_text.ART.11082008.R76DA8O
Gallup Poll has the candidates dead even
WASHINGTON The $787 billion economic stimulus bill approved by Congress will, for the first time, provide substantial amounts of money for the federal government to compare the effectiveness of different treatments for the same illness.

The legislation provides $1.1 billion for researchers to compare drugs, medical devices, surgery and other ways of treating specific conditions. It creates a council of up to 15 federal employees to coordinate the research and to advise President Obama and Congress on how to spend the money.

The program responds to a growing concern that doctors have little or no solid evidence of the value of many treatments. Supporters of the research hope it will eventually save money by discouraging the use of costly, ineffective treatments.

Spending on health care totaled $2.2 trillion, or 16 percent of the nation's gross domestic product, in 2007, and the Congressional Budget Office estimates that, without any changes in federal law, it will rise to 25 percent of the GDP in 2025.

Dr. Elliott Fisher of Dartmouth Medical School said the new money would help researchers try to answer questions like these:

Is it better to treat severe neck pain with surgery or a combination of physical therapy, exercise and medications? What is the best combination of “talk therapy” and prescription drugs to treat mild depression?

How do drugs and “watchful waiting” compare with surgery as a treatment for leg pain that results from blockage of the arteries in the lower legs? Is it better to treat chronic heart failure by medications alone or by drugs and home monitoring of a patient's blood pressure and weight?

Britain, France and other countries have bodies that assess health technologies and compare the effectiveness, and sometimes the cost, of different treatments.

Hillary Clinton, as a senator, was an early champion of “comparative effectiveness research.” As Congress translated the idea into legislation, it became a lightning rod for pharmaceutical and medical-device lobbyists, who fear the findings will be used by insurers or the government to deny coverage for more expensive treatments.

Republican lawmakers complained that the legislation would allow the federal government to intrude in a person's health care by enforcing clinical guidelines and treatment protocols.

The money will be immediately available to the Health and Human Services Department but can be spent over several years. Some will be used for systematic reviews of published scientific studies; some will be used for clinical trials making head-to-head comparisons of different treatments.

“The new research will eventually save money and lives,” said Rep. Pete Stark, D-Calif. In the absence of information on what works, he said, patients are put at risk and billions of dollars are spent on ineffective or unnecessary treatments.

Subscribe to The Charlotte Observer & Earn Miles.


You must be logged in to leave a comment. Login | Register


Comments: 14 Showing:


wojtek1 wrote on 02/16/2009 10:07:18 AM:
�The new research will eventually save money and lives,� said Rep. Pete Stark, D-Calif. In the absence of information on what works, he said, patients are put at risk and billions of dollars are spent on ineffective or unnecessary treatments. ..... Translation for the general population: "This research will save no money because new bureaucracy will eat all the savings. A pencil pusher will decide what kind of treatment you get. Fixed amounts of money will be allocated at the beginning of a new year for each type of procedure (as it is in Europe), you can put your name down on the list. If you are 75+ you will get minimal treatment because you are old and create unncessary burden. Please vote for us in the next election and die soon afterwards."
Recommend (0) Report abuse

bec wrote on 10/06/2008 00:31:30 AM:
peterclarke, the guilt by association game is just going to lead nowhere. McCain is friendly with convicted criminals like G. Gordon Liddy, who committed the ultimate non-patriotic crime of stealing an election. So he's as bad as Daly. Ted Stevens and Palin were all buddy buddy, now he's headed to jail. This could go on and on...neither side wins. It's like a junior high pissing match.
Recommend (0) Report abuse

ManInCharlotte wrote on 10/05/2008 11:25:13 PM:
Both candidates are the worse the two parties could have come up with. I'm looking at a nice little piece of property in Costa Rica!!
Recommend (0) Report abuse

Producer wrote on 10/05/2008 11:17:39 PM:
A bunch of elitists hanging out at the Grove Park Inn talking about the dumb little people clinging to their religion and guns. Wow, what fun.
Recommend (0) Report abuse

amerikalover wrote on 10/05/2008 10:03:18 PM:
First of all, I am a registered Democrat 26 years. I watched Joe Lieberman the other night and I am in total agreement, the past eight years for our party has been WT!?, and the next eight will be OMG!

Can some one please explain to me what a succesionist is? Seriously is that like someone who bombs the US Capitol and Pentagon? I didn't think so.
Recommend (0) Report abuse

sgabav12 wrote on 10/05/2008 09:30:15 PM:
For all of the 'die hard' republicans out here in NC(who continue to post negative information about Obama)... how many times have McCain/Palin came down to NC for a visit with you all?
Recommend (0) Report abuse

gymkata1976 wrote on 10/05/2008 07:48:26 PM:
First, I am a registered Independent.

I get a kick out of how Repubs try to insert Obama's middle name as often as they can. Is this to be inflammatory? He can't help what he was named. Sheesh. How about Todd Palin...member of a succesionist group in Alaska? Is that USA pride? What about Palin associating with witch hunter pastors? If you want to throw 'Obama' comments around, just remember that Palin and McCain comments can be thrown around as well. Oh, and didn't McCain read off a statement on tape bashing the USA when he was a POW? Hero for what he went through, yes, but he is hardly perfect. Keating 5 anyone?

So in walking along your party lines, just remember that for everything you dish out, your candidates have equally sinister things in their past. Stop the childish comments "McCain is old", "Obama Hussein", "Palin is dumb"; and instead focus on more upper level commentary.
Recommend (0) Report abuse

dcolonel wrote on 10/05/2008 07:13:42 PM:
Don't know where that sidebar results are from but here is the latest as of today, Oct 5, 2008: Gallup Daily: Obama Leads for Ninth Straight Day, 50%-43% October 5, 2008 Registered voters across the country continue to favor Barack Obama over John McCain for president, now by 50% to 43% in Gallup Poll Daily tracking from Oct. 2-4. This is Obama’s ninth consecutive day with a statistically significant lead.
Recommend (0) Report abuse

jneill7854 wrote on 10/05/2008 03:24:59 PM:
Just watched live on the internet. Not only does Obama tell us what he is going to do he tell us how he is going to do it. I am sick and tired of McCain telling us what he thinks we want to hear. It is time for us to stand up and take back our country.

We in North Carolina are longing for a glimmer of hope. We need a leader with a broader vision for a better America for our children and our grand children. We need a President that will lead us back to our American Dream with innovation, technology and education. I don’t see that in McCain. All I see in McCain is we must win the war at any cost and at any expense of the lives of our troops.

We need to get McCain out of our state like Michigan dumped him.
Recommend (3) Report abuse

amerikalover wrote on 10/05/2008 09:28:41 AM:
Because the subprime mortgage crisis created by the Democrats had nothing to do with the demise of Wachovia.

If Charlotte is hurting so bad, it would be interesting to see how many of those 700 from the party of the people passed on the Spa as a sign of unity. I am willing to bet not many.
Recommend (1) Report abuse
More comments on this story: 12
Disclaimer


Email PrintReprint or License
Share


EVENTSDININGMOVIES

Oscar Night America
Sunday, Feb. 22, 7:00PM
Belk Theater

T.I. & Young Jeezy

Anonymous said...

I agree the possibility of a 'home run' is nil for CLL. If there were one, we'd have it by now. CLL is a complex disease and many brilliant minds working hard for years have resulted in...what we have now. In other words, not much.

Intense exercise will not save you from CLL. There is a famous runner whose name I won't mention, but you might recognize it, who developed CLL. Several other CLLers that I know of were marathon runners. That did not save them from developing CLL and eventually dying from it.

You're lucky in that you have a few years in order to make up your mind. Others don't, and certainly don't want to be one of the 30% or so who die from the procedure itself.

As far as Obama-care goes, it will definitely lead to a rationing of care, meaning that diseases such as CLL will not be treated aggressively. There are just too few patients and the treatments are too expensive. Too bad! (I didn't vote for this ultra-liberal, and I will work hard to prevent this from happening, thank you very much.)

Watch out for these efforts to 'pick the best treatment options' for doctors. What this means is that the federal government will decide what is appropriate care, and if your doc wants to use something off-label, forget about it. Like Rituxan? So sorry! It's not approved for CLL!

oh dad said...

Thanks Dave. I too am in the 11q deletion club. Just finished FCR on Christmas Eve and have begun conversations with the Stem Cell Transplant team at the Ohio State University Medical Center. All indications are that the partial remission I'm currently enjoying (immensely!)will be relatively short-lived so the planning has begun. You've provided some good insights here. Thanks again.

Anonymous said...

"Intense exercise will not save you from CLL." I certainly didn't make any cure claims above. I did say that I believe that intense exercise helps keep CLL in check. No treatment or medication for anything is 100% effective. Let's even assume that intense exercise makes a significant difference in only 20% of CLL patients. Isn't it still worth trying? Several people here are willing to bet their lives on a transplant. I'm not sure why they wouldn't bet the far smaller assets of some time and energy to better their health and strengthen their immune systems.
Denny

David Arenson said...

I think there are CLL cases where the "outlier" wins, where someone gets lucky. In Denny's case, exercise appears to have done something even though that same exercise might not work for Patient X or Y.

BTW, for a further look at exercise and its effects on lymphocytes, I would highly recommend this topic at CLL Forum, in which a science-minded patient did some thorough research on his own intensive hiking regimens:

http://www.cllforum.com/view_topic.php?id=5773&forum_id=1&highlight=exercise

My larger point is that each body has its own microenvironment and each disease has its idiosyncracies. In some patients this means the unusual can be effective. There are a few, for example, for whom EGCG is really an effective and rather dramatic disease control. There is one famous case in which a TCM doctor in New York City evidently sent someone into a deep remission, impressing the doctors at Memorial Sloan Kettering -- although the results could not be duplicated on another patient. There have been cases of spontaneous remission.

I think we can never say "never." Something happened in Denny's case.
Who knows what might work for you? Maybe you won't respond to shots in the dark, but maybe you'll get lucky. Just choose your shots carefully and wisely. Exercise is certainly beneficial, whether it helps with the CLL or not.

PJ said...

You've laid out your dilemma well. I can't make any recommendations about your specific case, but wanted to speak about the potential efficacy of cord blood transplants. I had a double in Sept. 07 for relapsed aml. I was 53 and in otherwise excellent health.

Time was of the essence for me, and after watching 136 potential matches dwindle to 4, then to 1, and ultimately, to none, I didn't have the "luxury" of waiting. My doctor recommended cord blood as an option. His view was that cord blood "gives results equal or superior to SCT." The only thing "riskier" about cord blood (in my understanding) is that the relapse rate might be higher. GVHD is less, so it's less risky from that point of view. Basically, there isn't much data available because they're only offered at a small number of centers.

I had my transplant at Dana-Farber, where they do maybe 25-30 (?) cord transplants per year. I think if you consult with doctors who are experienced in the procedure, you'll find that they are more comfortable recommending it as an option. If you decide to go the transplant route, and you don't have a level of match you're happy with, you might want to explore cord blood further. Leave no stone unturned.

By the way, I'm 17 months out and feel like my old self.

Brian Koffman said...

David,

As you know, I came to a similar decision with a very similar history and prognostics (same as you except CD38+).

I will likely do it all over again if I relapse for the same reasons. Moving a significant risk of death upfront for a chance at a long life. Easy trade off for me.

BTW there is some evidence that there are survival advantages to a slight mismatch. More GVL.

If you want you can email off line. bkoffmanmd@gmail.com I'll give you my phone number and we can talk HSCT. Been there. Done that. Happy to help if I can.

Be well

Brian

50s something professional in recovery said...

Great explanation, Dave. I am more of a lower risk patient (no unfavorable prognostic tests) at age 59, treated twice and now normal counts for over a year. My brother matches me at least 6 of 6 and maybe better, I should ask my onco next visit, but he is not talking to me, angry for an unclear reason, so he may not actually want to donate. Maybe just as well, since the mortality and morbidity (chronic GVHD) are so high, I am not in a rush to contemplate transplant, nor is my oncol So many good agents coming down the pipeline (thank you pharma!) which hopefully will remain affordable (and available) in times of potentially increased rationing of costly care.....

LEE said...

Good Morning David,

Who do I contact, to get on a bone marrow transplant donor list, that might potentially help you out? If we match, you are welcome to have as much as you need! I'll just make more...!

Keep the Faith!

"LEE"
703.300.3159

Brian Koffman said...

One other thought.

While treatment are only slowly improving in CLL, there are rapid changes being made in the conditioning and F/U protocols for transplant.

RIC MUD HSCT are still pretty new in CLL, and as I and others are evident, the experts are still learning.

Waiting could offer some advantage in having more experienced doctors caring for you.

David Arenson said...

Lee,

Thanks for the very kind offer. More donors are needed for the National Marrow Donor Program. Even if you're not a match for me -- which is unlikely -- you may well be a match and a lifesaver for someone. Check this link for more information:

http://www.marrow.org/HELP/Join_the_Donor_Registry/FAQs_about_Joining_the_Registry/index.html

David Arenson said...

Brian,

Thanks for your perspective and I will be in touch with you. Certainly one of the advantages to waiting is for the procedure to be improved. IF the disease will let me wait is the question, and IF I manage to avoid problems (comorbidities) in the interim. So many IFS, so few answers -- this is a game of risks.

PJ,

I'm glad to hear your double cord blood transplant has been a success. I may well end up in the same situation given how few adult donor matches there appear to be for me -- in fact, I'd say the odds are at least 50/50. I am aware that cord blood transplants come with some advantages; hopefully we will learn a little more in terms of the data as more of them are done.

Anonymous said...

David, another advantage to waiting is the potential for a larger donor pool three years down the pike. You've already recruited Lee (and I hope he follows through!). Similarly when I learned about collecting cord blood at birth I recruited donations from the daughters of two of my friends to donate their grandchildren's cords. We can always hope that the spreading word will enlarge our pools. At 66 I'm way past thinking about transplants so I'm happy not to have to be in your position. Best to you always!
Betty Reynolds, CLLer in Deming, NM

KAYUMOCHI said...

That bit about the runner getting CLL reminded me why I started lifting weights: using 10 biomarkers that measure youth and vitality researchers have found that weight lifting hits all biomarkers in a positive fashion, immediately. Yoga hits only 3 positively and that is a cumulative effect. Running and jogging, much to my surprise have a negative effect on the biomarkers. In other words, muscles are the engine of youth and health. Running will get you in the grave faster.

This is why weight lifting/strength training is recommended for those on chemo or who have just finished. I say, "Why wait?"

KAYUMOCHI said...

Denny, you and I are liked-minded. If you would like to correspond you can reach me at edwards.ash at gmail.com

Anonymous said...

ok i see how your blog is working
and i have found the answers to my questions by going to the links on your sight
thanks for all this helpful info
let me know how your doing there
its now march 7th 2010
you don;t need post my first request for help,,you have answered all my questions for now
good luck to all of us with cll
my doc said somewhere down the road i will need chemo treatments to help this cll out i hope i have good luck taking that
see ya
joey in montana
you have my email send me a line if you feel like it someday