My mother is at a fork in the road. She has just completed her eighth CHOP chemo and is about to retest for status of her MCL. She was wondering which road to choose, her options seem to be either an allo BMT (using her brother's marrow) or to just continue CHOP or CVP. She wonders if there are any of you out there that could shed some light. My mother was interested in talking to people who have gone through Allo BMT or who opted to not pursue this aggressive option. If anyone would be willing to share their experiences, please respond. Any help would be appreciated! Thanks, Marjo

My understanding is that the general consensus among doctors familiar with MCL is that continuing chemo is not going to work. It probably will prolong your mom's life, but the MCL will continue to reappear, and she will become less able to take the chemo as time goes on.

So from my research, the question is not "chemo vs. allo", but "what type of BMT - allo vs. autologous"? That is, assuming your mother is young and healthy enough for a BMT. The risk of dying during the BMT goes up with age, especially allos.

In your note, you don't mention Autologous BMTs, so I will explain something about them and how they compare with allos. Forgive me if I say things you already know, but your note is rather brief.

An Autologous BMT uses the patient's own marrow, harvesting it after chemo when it is as clean as it's going to get. The argument for auto BMTs is that they are much safer than allos and, so far, allos have not proven to be more effective. It has been shown that waiting to do an auto when the patient relapses is not effective. But some doctors feel that doing the auto right after the chemo might be different. In general, autos are fairly safe. The fatality rate is well below 5%, probably around 2% I've been told. But the patient cannot be too old or unhealthy. On the other hand, the fatality rate for allos is somewhere between 10% and 20% (or even higher in some estimates), depending on age and health. Many centers won't even consider an allo on someone over 50 or so. Others will do them into the 60's.

How old and how healthy (besides the MCL) is your mother?

The argument for allos is that some doctors think autos have been proven ineffective. Also, "theoretically" an allo should be more effectively because (a) all the old marrow is destroyed; and (b) the donor's marrow causes a "graft vs. lymphoma" effect whereby the "new immune system" kills cancer cells that the old immune system couldn't kill. But this same graft vs. lymphoma effect is part of the dangerous Graft Versus Host Disease which can kill the patient during the transplant or cause long term chronic problems. Those arguing for allos also point out that autos might put cancer cells back into the patient.

Allos for MCL are generally only done if there is a good sibling match, since the risk rises dramatically with unrelated donors.

Has your mother's brother been HLA matched with her? If not, you must do this to see if an allo is even possible. The odds are 25% for any sibling that they will be a "good match" (which is called a 6/6 match).

My wife, Jody, 49 years old, is nearing completion of CHOP for MCL. Her current plan is to have an allo if one of her siblings is a 6/6 match. If they don't match, then she will have an auto. We should hear soon if any of her brothers are a good match.

Please feel free to ask any more questions. You can post them on the listserv or correspond directly to me. I think the listserv would be best, though, since we all can learn from each others questions and answers. I have been researching MCL since April, when my wife was diagnosed, and will be happy to try and share my experience.

Good luck, Marc

After the transplant does anyone know or have any data on the length of time before a relapse on auto. vs. allo., or does this depend on age and where the MCL has spread to? Also, if there is a relapse what are the chances of remission or the length of time left before the end?

Big, big questions. All I can say is that the results of bmts, and all other treatments for MCL, were pretty bleak up to a year or to ago. In the last year or two many new and exciting approaches have been taken. But it is too soon to sum up their long term effectiveness.

You will hear the phrase "median survival from diagnosis of 3-5 years." But today it is a meaningless statistic. One thing is for sure. There are many, many MCL survivors who have been around for many years. Marc

There was an article November, 1997 on Dana Farber's experience with MCL relapse in patients post-Allo and post-Auto. They found that NONE of the patients with Allo transplants who survived the transplant and transplant- related complications (no small feat) showed evidence of MRD (minimal residual disease) post-transplant, and that very few relapsed (less than half with a fairly lengthy follow-up, 3-4 years I think). The Auto's, by contrast, had high transplant survival rates but invariable evidence at the molecular level of MRD. EVERY one eventually relapsed.

Since I'm an Auto, I try to bear in mind that the chemo during this study was mainly CHOP, not Rituxan and not high-dose Hyper-CVAD with Ara-C/MTX. The success rates out of MD Anderson using the latter are, so far, quite promising.
Pat

Thanks Pat. Could you give me the names of some doctors or centers that are using chemo approaches instead of bmts? I've talked to doctors at Hutch, Dana Farber, Stanford, Sloan Kettering, Nebraska and New York Hospital (where Jody is having CHOP), and its from them that I've heard "bmt is the way to go." But I admit all these questions are in still up for debate and I haven't heard all views.

Thanks again, Marc & Jody

Marc, I too have come up with much of the same information that you did with one exception. As I've indicated in previous posts to this list, I am working towards having an ALLO BMT possibly in December up at DFCI. My age is 57, have always been in pretty good health, and my sister will be my donor, we are a 6 for 6 match. It should be noted that DFCI will only accept a 6 for 6 match plus your bone marrow involvement cannot exceed 10%! When I had inquired about the possibility of an AUTO. BMT, I was advised by Dr. Fisher at DFCI that they had done a study consisting of twenty-five MCL patients. Each of those patients were treated with a purged AUTO BMT. All have relapsed!

When I checked with other cancer treatment centers, all seemed to concur that an AUTO. BMT does not work for MCL! By comparison, DFCI has had some success with ALLO. BMTs for treatment of MCL. They have patients who have gone over two and a half years with no relapse. In addition, I talked to one person on this site who had an ALLO. BMT up in Canada four years ago, and still no signs of the MCL returning. She indicated to me that she has been able to resume a normal life. That's good enough for me and I'll take the risk!

Darrell

I firmly believe that MD Anderson's success with auto (as well as allo) is due to the quality of the remission that their hyper-CVAD/HD MTX/Ara-C attains. (Also, MDA will not do an auto if any BM involvement remains after chemo.) It is possible that future diagnostics (like Immunomedics radiolabeled antibody fragments) will help ascertain the quality of the remission, but as of now, I don't see anybody trying to do this.
Tom

Darrell, I am wondering what where the laps periods for a auto verses a Allo. We all know that if you can have an Allo it is better. Not all are as LUCKY as you and can have a match, or if they have a match have all the other necessary stuff on there side. It has been my understand that so far there are no records past the 5 year mark on what IS in fact successful for MCL. Just wondering what were the numbers here, and good luck we are all rooting for you... Blessings Tammy

Hi Tammy, there is a study posted on this site or, the NHL sit from DFCI which pretty much tells the story. They have been pretty successful with the ALLO BMT for treatment of MCL whereas, they did twenty five AUTO BMT for MCL and all eventually relapsed! Believe me, it is not an easy decision when you take into consideration that there is a 15% risk of mortality however, after talking to one person who has remained cancer free four years after the ALLO BMT, I am willing to take the risk!

If a person does not have a match in the family, then the alternative is to go with a MUD ALLO BMT however, the risk of mortality goes up to 30%. Thank you for your concern and well wishes. Darrell

1. I would like to hear opinions, experience, research, etc. regarding TBI as part of an Autologous BMT protocol. What are the benefits? What are the risks?

2. Does anyone have a phone number for Dr. Khourri or Dr. Cabanillas at MD Anderson in Houston? Is there an "in-the-know" way to bypass the receptionist and speak to one of them directly? Do they return phone calls? My only experience with them is when we sent my wife's biopsy slides to them for a second opinion. They were not good about returning phone calls and keeping us informed. But perhaps that's just the Pathology Dept. Thanks in advance. Marc

Just my $3.02 worth on this subject regarding various postings. There are many variables involved in these comparative reports that people should give further evaluation and thought. Many of these reports do not provide a good deal of data on what a person actually relapses from or provide other detailed individualized disease specific considerations, or a better comparative value against other stem cell transplant options. I guess I am concerned for newbies here in getting scared and relying heavily on these reports/stats in influencing their judgment or adding to their dismay. Whether one is "fortunate" or not in having a familial 6/6 match for an allo bmt, should not influence a newbie's frightened decision-making process for an allo or an auto bmt or similar division for an allo/auto pbst/pbsct. For newbies, they have no conceptualization of the difference between a bmt and a pbs(c)t, so proffered data in preference of an allo bmt versus an auto bmt has it's elements of influence and good data support, but the pbs(c)t realm has not been mentioned within the scope of discussion, and by this omission can lead for much anxiety for many unknowledgeables facing many fearful unknowns, especially if an allo or auto bmt cannot be provided as an option. I do come forth from an experience here with Bob and can honestly state that if his sister had been a 6/6 match I can't say I would have recommended an allo bmt for him considering the higher risk factorization. Each person is different and I hope everyone holds firm their own specific individuality regarding their own particular options in the decision-making process. Not an easy road. Input here I've been reading is very good stuff on the subject(s), but have my typical worry of the words of wisdom and experience may go over the heads of some to discourage during their period of mental fright & flight. Regardless of what decision one does make, it is the right one and the burden of that decision will fester for a loonnnnnng time & yo-yo with lots of twinges & cringes [smile].
Robin

Cora,

"When going through the A D Anderson program, how much risk is involved with the stem cell transplant phase?"

If you want the statistical probabilities this post will fail you. However, I finished my stem cell March of 1997, and can offer knowledge from my experience.

Risk is probably a rarefied term with regards to MCL. For instance, what is the "risk" if you don't elect to enter the stem cell program?

Practically, risk of infection, from all sorts of esoteric beasties, that healthy folks don't succumb to, is very real, because you won't have an immune system after go through the heavy chemo before your stem cells are reintroduced. Thereafter you've 8-to-20 days for them to engraft. (These times are what I was told. I've heard different times from others.) Either case, what's critical is where in that time frame engraftment happens, i. e. 8-days and there's about 0.0% chance of infection. The more time passes the greater the infection risk.

Fortunately, I engrafted in 8-days. Except for the five days I spent in the hospital enduring the heavy chemo, the whole procedure was done as an outpatient. I wore a mask anytime I was outside. If I had to visit another doctor I ask to wait in a secure location. Plants, animals and little kids were banned from my presence. The air was cleaned with HEPA filters. Hygiene was spotless. No fresh fruit or vegetables that aren't cooked.
David

There is, of course, no possibility of rejection, so none of the GVH BMT complications apply. There is, it seems, some risk of secondary malignancies (principally acute myeloid leukemia) as a result of TBI and intensified induction therapy pre-BMT, and a very real risk of eventually getting cataracts--which can generally be treated with minor laser surgery. The biggest risk, in my opinion, is that you may exhaust your body's cumulative tolerance for TBI and chemotherapeutic agents like adriamycin, while not getting all the MCL. Then you're quiver's down to very few arrows (Rituxan, perhaps) the next time around.

November, 1997 issue of Blood (available at the journal's Website: www.bloodjournal.org) discusses the Dana Farber experience with ALLO vs. AUTO BMT's and MCL.
Pat

As I say in the email below which I sent to Marjo Kremkow a few days ago, different doctors and centers have different views on whether it is worth the added risk to do an allo.

I just wanted to add that I spoke with Dr. Khourri from MD Anderson on Wednesday. He called me right back and was very helpful and knowledgeable. (He does have a thick accent, so I had to listen very carefully.)

He told me that MD Anderson's approach is to use Autologous pbsct for MCL, not allo. I asked him what he thought of the Dana Farber study (see Journal of Clinical Oncology, Jan. 1998) which says that autos don't work for MCL. Dr. Khourri thinks the DF study is not relevant because (1) they used CHOP as the initial chemo (MD Anderson uses its own chemo), (2) the patients did not have CR or very good PRs before the bmt's, and (3) only 8 of the 28 patients in the DF study had their bmt's right after initial chemo - the other 20 had bmt's upon relapse of the cancer.

They also include TBI.

Dr. Khourri also said that MD Anderson's initial chemo, which is called Hyper CVAD and MTX Ara-C, is soon going to be modified to include Rituxan.

His views were similar to Sloan Kettering's, except that Sloan uses a combination CHOP and ICE for the initial chemo regimen.

(Just to be clear: when I say "initial chemo", I mean the months long chemo treatments which are the typical first attack on the MCL. BMT's also generally include a few weeks or more of "preparatory" chemo for the BMT. I am not referring to that.)

Hope this helps someone. Marc

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Updated 10-25-1998