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Allo (donor) stem cell transplant basics

Posted on February 04 2013 by Pat Killingsworth | 1,324 views

From time to time my readers and I reference allogeneic (donor) stem cell transplants as a potentially long term therapy fix for multiple myeloma–and possibly even a cure.  The procedure is considered experimental and can be very dangerous.  So much so that Medicare currently will not pay for one of these transplants in a myeloma patient.

Here is a link to an interview blood cancer survivor, Andrew Schorr, did with allo expert, Dr. Craig Hofmeister, recently for one of his Patient Power broadcasts.  In it, Dr. Hofmeister discusses allogeneic transplants and explains why they aren’t commonly preformed:

Allogeneic Transplant for Multiple Myeloma

 

Dr. Hofmeister

Listen.  There are lots of reasons for a myeloma patient not to undergo an allo SCT.  But I am intrigued by them, as have been BMT clinicians for decades.  Because in theory, these darn things should work!

Unfortunately, often they don’t.  But sometimes they do!  I have several very long-lived myeloma survivor friends that have undergone the procedure.  Sometimes people “get lucky” and live with multiple myeloma for many years with little explanation as to why.  But more often than not it is because that survivor and his family have been willing to roll-the-dice and be exceptionally proactive.

Allos aren’t supposed to be effective salvage therapies.  Yet my good friend, Dr. Arnie Goodman, underwent one last August as an extremely last resort.  It was successful, and he is still alive and, according to Arnie, “enjoying a good quality of life” today.

One of our regular readers, Mark, had an allo SCT early-on following his diagnosis.  He is a strong advocate of the procedure when used proactively and early.  Well known myeloma advocate, Ohioan Jim Bond, recently underwent an allo after battling 20 years of myeloma and is doing exceptionally well.

I interviewed dozens of allo transplant patients while I was writing my book, Stem Cell Transplants from a Patient’s Perspective.  I can tell you first hand, allos are no picnic!  And with death rates still hovering around 10%, they are extremely risky, too.  But while researching my book I found that there is also a 10% chance of a long term (10 years or longer) remission or cure.

Are you feeling lucky?

Would I consider undergoing an allogeneic stem cell transplant if and when I run out of other therapy options?  Yes.  Getting doctors to agree to do one–and making the decision to proceed–is another story.

But like the University of Arkansas Medical Center’s (UAMS) aggressive Total Therapy, I believe it’s important to get information out about a variety of different myeloma therapy options, even if I wouldn’t necessarily chose one myself.

Feel good and keep smiling!  Pat

13 Comments For This Post

  1. Steve Says:

    At first blush I’d have guessed that surviving, if not thriving from an allo may greatly depend on how early in one’s disease the allo is completed…then again…you’ve got folks like Goodman, Aiello and Bond who had them late in their respecitve treatment histories so….. maybe timing isn’t that critical? Decisions, decisions…. :(

    Steve

  2. Terry L Says:

    As you point out, Medicare will not pay for them and most private insurance likewise will not pay for them upfront (when they are considered to be the most effective)as they are considered to be experimental. However, I am aware that they are done at the NIH where I am treated (I did a different treatment) and one does not need insurance coverage there if accepted into a clinical trial. Apparently, the allo team and doctor there are great. Mark may know more about them and the insurance dilemma newly diagnosed patients face if they want an upfront allogeneic transplant.

  3. Pat Killingsworth Says:

    More “maybe, maybe not” options for myeloma patients and their families to grapple-with. I think by definition we should all be GAMBLERS! Like I wrote: “Feeling lucky?” Applies to most any relapsed therapy. Some decisions are just more complicated, fateful and painful than others…

  4. Mark Says:

    Hi Pat,

    I had to make a comment on this video. At the beginning Dr. Hofmeister comments that doctors and patients have to “hope” the patients do not have GVHD (graft vs host disease). There are different methods of T cell depletion that can be used to prevent the bad type of GVHD – extensive chronic GVHD. If anyone is interested in a little more thorough (and accurate) discussion of GVHD and where we are at I would recommend this video. Dr. Sergio Giralt (Robin Roberts allo Doc) is being interviewed. I found it amusing at the beginning that the reporter says to Dr. Giralt that the concept of auto transplants do not make much sense to him. I agree with the reporter on that issue!!! Dr. Giralt on just about everything else.

    http://www.mskcc.org/multimedia/new-approaches-bone-marrow-transplantation

    With respect to how effective an allo may or may not be for myeloma patients, there are no randomized trials that incorporate the novel agents into the process. It is very difficult to say how an allo may work for a patient diagnosed in 2013. Everyone needs to remember that an allo is supposed to be done on a patient in first complete remission. It is only recently that myeloma patients had a good chance of getting into remission. Dr. Anderson of Dana Farber wrote about this in late 2010:

    “Most recently, the use novel of therapies as induction, as well as to consolidate and maintain response post autologous transplantation, has markedly improved both extent of response and progression-free survival. In fact, the high extent and frequency of response post lenalidomide, bortezomib, and dexamethasone induction therapy now allows for evaluation of the added value of autotransplantation therapy. In a similar vein, studies of reduced-intensity conditioning allotransplantation now should incorporate novel therapies. Lenalidomide, as an immunomodulatory drug, has the capacity to augment GVM. Bortezomib can overcome at least some high-risk features, such as t4:14 translocation, and may also abrogate GVHD and graft rejection. Most importantly, the ability to achieve high frequency and extent of response with lenalidomide, bortezomib, and dexamethasone therapy suggests that reduced-intensity conditioning can now be tested in the setting of minimal residual disease, where maintenance lenalidomide offers the ability to augment donor GVM and achieve long-term disease-free survival.”
    http://www.hematology.org/Publications/Hematologist/2010/5894.aspx

    Mark

  5. Mark Says:

    Hi Terry L and Pat,

    Do not forget that only 10-15% of all myeloma patients are candidates for full allo transplant. The cost of mine was in the area of $650K. It is just good business for them to try and avoid paying for allos. I would also point out that some patients report having problems getting insurance coverage (private and Medicare) for full payment for other myeloma therapies (Revlimid seems to come up the most) as well. Heck, Pat even wrote a book to help patients get financial assistance to pay for treatments!

    I had a point of contact at the insurance company after I was diagnosed – a case manager. She told me when they initially rejected the allo right after induction that it would be approved after I did an auto. She all but came out and told me it was being rejected to hopefully change my mind about doing the procedure. This is one of the problems with being a younger patient with an older persons disease. A lot of myeloma Docs want to treat patients in their 40′s the same way they treat patients in their late 60′s and insurance companies have guidelines for the “average” patient. I am far from the “average” myeloma patient.

    Mark

  6. Pat Killingsworth Says:

    Thanks for taking the time to weigh-in extensively about this, Mark. And thanks for the helpful links! Interesting how I keep hearing allos aren’t good salvage therapy, yet the long-lived patients I listed all benefited from it. Maybe you addressed this and I missed it? And the need for a CR or even better, an sCR must be the reason tandems are used so often (auto/allos)? I’m guessing the key point here is “successful. If a refractory patient gets two years out of an allo, was it successful? That’s viewed as successful if its an auto. Dr. Arnie has lived six or seven tough years battling an aggressive form of myeloma. If an allo gives him, say 22 months–long enough to try a new therapy or two which gives him another year or so, he (and I) would argue its worth it! You just helped extend a patient’s life by almost 40%! I understand you usually look at allos from your perspective. Only natural, I do the same. We know our situation best. I will be interested in getting your take on this “other” use for allos in myeloma. Thanks, friend!

  7. Nancy Shamanna Says:

    Yes, I think it is ‘false economy’ to try to second guess just how valuable a treatment may be. If an expensive treatment such as an allo transplant put a patient into a prolonged remission, and thus saved him/her from more extensive treatments too, it would not be as expensive as other long running therapy, or approx. the same. we don’t look at health care costs in quite the same way here, but I can certainly see how a younger patient might be interested in the ‘allo’ route, as Mark took.

  8. Mark Says:

    Pat,

    My last comment on this topic – hold the applause!

    It may turn out for myeloma patients that the real advantage to an early allo may be how well the novel agents work after the allo. Dr. Durie put together a nice synopsis of different oral presentations from this years ASH.
    http://myeloma.org/pdfs/ASH_HIGHLIGHTS_2012.pdf

    Only 3 that he highlights are about transplant and 2 deal with using novel agents after allo transplant. They start on Page 8. They are both small but both show very promising results. They are great examples of what Dr. Anderson wrote about above – incorporating novel agents into the allo process. One shows Velcade increasing PFS and OS for patients that use it after tandem auto-allo compared to those that only do tandem auto-allo and the other is another study that shows how effective Revlimid can be for patients that relapse after allo. Definitely great news for younger patients like me that need a lot better than 10 years of OS!

    Mark

  9. Pat Killingsworth Says:

    Hey Mark! Did you happen to catch these comments one of the long-lived allo survivors (just recovering from his SECOND ALLO!) Jim Bond wrote following the Myeloma Cinderella column?

    Pat, thanks for sharing Paul Richardson’s and other promising ASH developments. As a 20+ year survivor of stage 2 kappa light chain mm, and a 10+ year patient of Paul’s, several years ago he shared his “snake in the basket analogy” and added that it is important not to crush the basket with too heavy a weapon.Each case is unique. Paul, his team, and clinical trials are key reasons I am alive and very active at 64.

    Last Sept, I was diagnosed with treatment-related AML, was hospitalized in Cleveland at University Hospitals for 11 weeks and received an unrelated donor transplant which saved my life. This was my 2nd allo ant 4th transplant. I encourage people (age 18 to 44 are free) to register to be a donor. Go to Be The Match for details. I am at jim.bond48@gmail.com
    Tests show I am currently luekemia-free and mm remains in remission.

    Tough guy! You need to be to live 20 years with myeloma–and now AML, too! Bet he gets some anti-myeloma benefit from his most recent decade, too. See you in a decade, Jim!

  10. Hugh Says:

    Where I am treated they consider allo transplant to be MORE effective than auto. I have had auto/allo/ and mini-allo and in my 8th year now, and 68 years old. I have not needed to be on any chemo maintenance for over two years now since my mini-allo.
    I was fortunate to have a brother that was a match. If it is available to someone, I would recommend this as agressive treatment.
    The novel agents are wonderful, but when taken to avoid SCT, you need to remember they are enableing you to get older, not to wait too long to consider SCT!

  11. Pat Killingsworth Says:

    Great point, Hugh! You must be one tough guy!

  12. Mark Says:

    Jim Bond and Hugh are definitely inspirational patients, that is for sure!

    As far as allos for relapsed patients, you are looking at them in a realistic way. They should be viewed as just another sequential therapy in that setting. If you end up being a Jack A, all the better but the patient has to be aware of how rare that is in a relapsed setting. Reality is that most myeloma Docs do not like using allos upfront. It is hard to picture them being willing to do them later when they are less likely to be effective and carry a greater risk of resulting in non relapse mortality. I think a question or two about allos in relapsed patients would be great for the Docs on the Cure Panel discussions. I think we have heard enough of the myeloma docs discussing proteasome inhibitors and IMIDs! Time to move on from discussing the “same old, same old”.

  13. Pat Killingsworth Says:

    Hard to argue with that, Mark! Next Myeloma Cure Panel will be caller featured–40 minutes to call-in and ask questions. Hope you can and ask Jack A some questions and you two can chat a bit. Sound quality not always the best, but it would be great to learn about how the process has changed after more than a decade, etc…

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