The Leukemia & Lymphoma Society - Fighting Blood Cancers
28 Replies Latest reply: Jun 16, 2012 2:23 PM by Tex RSS

Are all bone marrow transplant centers equal?

jenzen Registered Users
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My partner has AML M4 with the FLT3 abnormality. Our oncologist thinks that a BMT is the best next step. We just recently finished induction chemo with a successful remission. Our oncologist has said that it really doesn't matter where we get her BMT because unless we just want to be somewhere "famous" they are about all the same now. We are in Ohio and he is sending us to the James Center for a consult. There never seems to be enough time to figure things out. Please advise!

  • Re: Are all bone marrow transplant centers equal?
    rzeboski Registered Users
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    The procedure is the same pretty much everywhere. I am going to assume that your partner is going to go for a allo type of transplant. My clinic does it slightly differently than others, but here's the basic allogenic transplant procedure:

     

    1) They tissue type the patient, usually to 6 to 8 genetic markers. My clinic does it to 10. This is called HLA typing.

    2) They scan for donors that match the same markers.

    3) Once they found a match, they screen the match again to make sure that they are a match and are in good health.

    4) It goes one of two ways from here, either bone marrow is physically harvested via surgery, or they give the donor medicine that boost the production of the stem cells to levels that push these cells into the blood stream. At this point, they harvest the cells much like a blood donation of platelets or plasma. Run the blood through a filter of some sort, harvest the stem cells, and put the remaining blood product back into the donor. A count of the stem cells are done to see if enough has been harvested or not. If not, the donor will have to give again.

    5) Stem cell transfusion takes place on your partner. Much like a blood transfusion.

     

    There's advantages and disadvantages of going to a "famous" clinic. I am going to MD Anderson and I am waiting for my window of opportunity to happen. I just need one more test for the insurance side. The advantage of MD Anderson is that they know what to expect, have a huge staff of people that have seen it all, and know what to expect. The disadvantage is how big the place is, how expensive it is.

     

    From what all I've read, it's not the transplant that you have to worry about, it's the post transplant phase of recovery to look out for, which, I think going to a hospital that is known or has a record of transplant recovery would be wise.

  • Re: Are all bone marrow transplant centers equal?
    KyGuy Registered Users
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    The simple answer is NO, not all centers are the same.  You can look at it generically and say that at any given center, some people have good experiences and some people have bad experiences but the centers are not the same.

     

    I live in KY, just south of Cinci so I considered the James.  I ended up going to the Hutch (Seattle - fhcrc.org).  They are one of the "famous" ones.  That's because the research at those centers is in a class by themselves.  The Hutch and MD Anderston are the top centers.  The key is to do your homework.  Get information from centers that you want to consider.  One thing that distinguishes the Hutch is the personal attention.  Being one of the top centers, there are tons of people from all over the world who go there.  However, when they took you into an exam room, you were the most important person they had to see that day and the spent all the time you needed with them.

     

    I would suggest contacting the centers and talking to someone there.  Find out what their process is - care prior to the transplant, during the transplant, and follow-up.  You'll get a feel for the place when you do that.  Also, if her doc isn't a transplant specialist, you want to make sure that her doc will have a good relationship with that center.  She needs to be comfortable with the transplant center and confident that they'll save her life.  If her doc doesn't want to work with that center, she may need to switch docs.  This decision is too important to be taken lightly.

     

    Take care,

    Kelly

  • Re: Are all bone marrow transplant centers equal?
    Lottie Registered Users
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    No, they are not. There are the famous ones like the Hutch and MDA, but there are also less famous ones that are excellent. The main idea is to find a center that does LOTS of transplants and has success with them. It is important to find a center with doctors who are well educated and complete specialists in the field. Go here: http://marrow.org/Patient/Transplant_Planning/Choosing_a_Transplant_Center/U_S__Transplant_Centers.aspx

    You can pick a state and find transplant centers, and then review the stats on them. See how long they've done transplants, how many of each type they do every year, and what their survival stats look like.

    My husband had his at Mass General Hospital in Boston, MA and had a wonderful experience there. There were people who came from all over the country to be treated there; luckily we only live 1.5 hours away. The doctors are dedicated; he sees the same one at every OP appointment so we have developed a relationship with him. The nurses were amazing.

    So, the most important thing is to find a center with a good record and experience. From there it is all personal preference.

    • Re: Are all bone marrow transplant centers equal?
      porciniak Registered Users
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      Lottie wrote: ...............................

      So, the most important thing is to find a center with a good record and experience. From there it is all personal preference.

       

      Wise word from all!

       

      Are all mechanics the same?  dentist?  etc etc.

       

      I don't like the term 'famous', prefer renowned   Where one lives is a big factor, considering the cost.

       

       

      A good place to start, imho, is the Honor Roll in ranksings by US news and World report

       

      http://health.usnews.com/health-news/best-hospitals/articles/2011/07/18/best-hospitals-2011-12-defining-the-terms

       

      On the left side of the page is loads, about half way down is the Honor Roll list....and these are all very familiar from the posting on the boards.  The first page that loads give a run down on the criteria considered in the ranking.

       

      The top transplant centers are renowned for a reason, they do research and treat many patients with good results.  That doesn't mean that the second and third tier centers are not any good.

       

      I was fortunate that the closest center to my home is one of the best.  Though I had to travel, establish an apartment for several months in order to be 15 minutes away from the center.

       

      Good luck on this difficult road.  dj

  • Re: Are all bone marrow transplant centers equal?
    RMD Registered Users
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    Hi-

    I agree with the other posters that there is a difference in medical facilities. 

    But that being said, I think Ohio has some great choices for transplants  including the James Cancer Center at Ohio State, the Cleveland Clinic and Ireland Cancer Center at Case Western University in Cleveland). The Ireland Cancer Center and the James at OSU are both in the National Cancer Center Network (NCCN) which has some advantages. 

     

    I had my transplant at the James at OSU and was very happy with my treatment and follow-up. They keep on top of everything. I had a second opinion at the Cleveland Clinic and found them to be top notch also. You see and meet people from all over the world at the Cleveland Clinic-  there is even a Cleveland Clinic in Dubai now (I'm not making this up!). 

     

    Best wishes as you go forward.

    • Re: Are all bone marrow transplant centers equal?
      tranier Registered Users
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      The Cleveland Clinic is 9 in US News' ranking..My son had his Allogenic transplant there 7 mos ago...We have always been pleased that the head doc always saw BJ once weekly post-transplant during those critical 100 days...I know that is not the case everywhere...We only live an hour away...but we did get three other opinions (MD Anderson and Moffit along with University Hosp) and all rec same chemos/protocal..he was CML

  • Re: Are all bone marrow transplant centers equal?
    jenzen Registered Users
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    Thank you everyone to all of your great suggestions and information. The websites were a huge help. I feel like I have just crammed for a big test tomorrow trying to fully understand the process and what questions we will need to ask. We will have our consult at The James tomorrow so wish us luck!!! :-)

    • Re: Are all bone marrow transplant centers equal?
      willowbayfarm Registered Users
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      At the risk of really overloading your brain, here is a link to a list of questions put together by seasoned members of this forum for folks looking at a transplant.  http://community.lls.org/message/108855#108855

       

      Just as a head's up, transplant consults tend to be a sobering event.  Be prepared for them to roll out some worst-case scenarios in the interest of making a full disclosure.  Keep in mind that while some folks do experience some of the side effects they will likely tell you about, many do not.  I wish you both well.  Also, most such meetings will generate a report or a letter to your local doctor, and the patient is entitled to a copy (although the patient may have to request it).  It can be a great reference to supplement any notes you may take.

       

      - WBF

    • Re: Are all bone marrow transplant centers equal?
      Tex Registered Users
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      I feel redundant at this point but do want to weigh in.  Not all centers are anywhere near equal.

       

      Like Kelly I am an alum of the Hutch.  (Another applicable link is seattlecca.org.  That's the Seattle Cancer Care Alliance which the Hutch is part of, joining with the UW Medical Center which is the hospital they use in transplants.)

       

      That disclosed, I think that what rzebowski wrote it really important to focus on.  Yes, anyone can give you chemo and hook up the IV bag that delivers the donor cells.  However, there are so many things that can go south during the conditioning phase, the transplant and recovery that you want people who have experienced as many of those situations as possible.

       

      That means you want a place that does a lot transplants.  Simply because of the laws of chance, these centers have encountered more things.  That means they know what to do in more critical situations because they've done them.  For better or worse, the "renowned" centers have done more, seen more, saved more.

       

      I've never been crazy about the marrow.org comparison as I don't think it deals with all of the right issues, though to be fair I haven't looked at it in awhile.  My insurance company had a list comparing the centers they have transplant contracts with and it gave me some stats that meant something to me.  Maybe your insurer has a similar list?

       

      I do want to say that the marrow.org list is better than nothing.  And if they've improved it in the last couple of years, it could definitely be helpful.

       

      FWIW, if I was in Ohio, I'd definitely look into the Cleveland Clinic.  That seems to be the place in OH that most of the folks around here have gone to and it has an excellent reputation. 

       

      I went from OKC to Seattle to go to famous place.  I'd do it again.  I felt very comfortable and secure there.  In the long run, I think one thing that matters most or close to most is how your gut feels.  Do you feel like the center fits you?

       

      Blessings

    • Re: Are all bone marrow transplant centers equal?
      KyGuy Registered Users
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      There's something that I wanted to say in my last post but hesitated.  Here it is.... I'm concerned about a doc who would tell you that all the centers are the same.  I'd question his experience with different centers and his research.  Peronally, I wouldn't be comfortable with someone making that comment.

       

      Take care,

      Kelly

      • Re: Are all bone marrow transplant centers equal?
        Tex Registered Users
        Currently Being Moderated

        KyGuy wrote:

         

        There's something that I wanted to say in my last post but hesitated.  Here it is.... I'm concerned about a doc who would tell you that all the centers are the same.  I'd question his experience with different centers and his research.  Peronally, I wouldn't be comfortable with someone making that comment.

         

        FWIW, I agree.  I thought that was a kind of idiotic comment.  It's probably more being ill-informed.

         

        Jen, it's not our intent to damage your comfort level with your doc.  But it is a question worth delving into.

         

        Then again, once you've returned from your transplant, your local onc should pretty much be taking his/her cues from your center.  You should be more of a transplant patient than a cancer patient.

      • Re: Are all bone marrow transplant centers equal?
        porciniak Registered Users
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        KyGuy wrote:

         

        There's something that I wanted to say in my last post but hesitated.  Here it is.... I'm concerned about a doc who would tell you that all the centers are the same.  I'd question his experience with different centers and his research.  Peronally, I wouldn't be comfortable with someone making that comment.

         

        Take care,

        Kelly

         

         

        I agree with Kelly on this and, like him, hesitated to mention it.

      • Re: Are all bone marrow transplant centers equal?
        jenzen Registered Users
        Currently Being Moderated
        Our oncologists comments and hesitancy about her treatment has given us significant doubts about his ability to treat her. We very much liked the doc we saw at the James. So if we do decide to do the BMT here we will be working with her.
    • Re: Are all bone marrow transplant centers equal?
      warrior Registered Users
      Currently Being Moderated

      I will reiterate not all  hospitals and not all centers are equivalent. It maybe if all you need is a couple of stiches in a  cut any er will do, but a stem cell transplant is extreme medicine and you need doctors, nurses and a support staff who have seen lots of cases. Things can turn on a dime and you want to be cared for by folks who know what they are doing. Also places like Seattle and MD anderson,  JHU and the dana Farber have docs who are involved in clinical research and are aware of the state of the art. This is a rapidly advancing field in the age of genomics and you want someone who has a large bag of tricks treating you. With AML the initial induction can often be an acute situation that needs to be handles asap . But now you have a little window to get several opinions. I consulted 2 outside doctors before deciding on a treatment plan for my partner after her initial induction that put her into remission. I continued to consult with an outside doctor the entire time she was in treatment. I agree with Kelly that any doc that claims all centers are the same is suspect. My partner was NPM1+ Flt3- and was part of a study protocol where she had a auto-sct. BUT this would not have been an option if she was flt3+. I am glad you found this forum there is alot   of experience  here use it for information and support this is going to be a long long marathon.

  • Re: Are all bone marrow transplant centers equal?
    JBT Registered Users
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    Jen,

     

    I am in total agreement with everyone that there definitely are differences between facilities.  I live in Dallas and had my transplant done at Baylor University Medical Center. They have done over 4,000 transplants, not the same numbers as a hutch or MD Anderson but they have an excellent track record.  I checked out MDA but one of the most important things to me was being close to my family. It was a plus that Baylor had a top record for treating patients with unfavorable cytogenetics ( and that was me, 11q23 & Flt-3 ).  The choice is a HUGE one that should be carefully considered and homework done.

     

    One last thing....I agree with KyGuy that your Onc saying that all are the same is concerning.

     

    My best,

    JT

    • Re: Are all bone marrow transplant centers equal?
      Tex Registered Users
      Currently Being Moderated

      JBT wrote:

       

      one of the most important things to me was being close to my family.

       

      I strongly considered Baylor.  It was really the only place I considered besides the Hutch.

       

      Thing is, my folks are in Dallas.  I didn't want to have to deal with them while I was fighting for my life so I went 2,000 miles away.

       

      Funny how things work out.  Family drew you to Baylor and pushed me away from it.  Ain't family dynamics a hoot?

      • Re: Are all bone marrow transplant centers equal?
        rzeboski Registered Users
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        Tex wrote:

         

        JBT wrote:

         

        one of the most important things to me was being close to my family.

         

        I strongly considered Baylor.  It was really the only place I considered besides the Hutch.

         

        Thing is, my folks are in Dallas.  I didn't want to have to deal with them while I was fighting for my life so I went 2,000 miles away.

         

        Funny how things work out.  Family drew you to Baylor and pushed me away from it.  Ain't family dynamics a hoot?

         

        That's kinda why I choose MD Anderson after my first round of induction chemotherapy. I was living in Austin, but all of my family lives in Houston, parents, aunts, extended family. The whole 9. I would have stayed in Austin but with talking to my oncologist there, he helped guide me to make a choice. That was nearly two years ago. Don't get me wrong, I love my family, but damnit, some times they can be over bearing, or want answers that I don't have.

         

        I also want to clear up a little bit more about MD Anderson, I love the place and the people that work there. The ease of which to work within their system is just amazing. It can get a little rushed, and hectic, but I assume that is the same for all the top tier places, everyone wants to go there, and thus, they have to take care of a mass of people. But it also felt good and safe being there. I enjoy, as much as someone can, going there when I have too. Admittedly, I don't enjoy that I had to eat my words when I told some of the clinic staff when I first left, for what I thought was good, that I hope to never see these people again, but it is good to see the same faces there.

         

        It's too bad that there is no way to test drive hospitals for stuff like this.

        • Re: Are all bone marrow transplant centers equal?
          Tex Registered Users
          Currently Being Moderated

          rzeboski wrote:

           

          I love my family, but damnit, some times they can be over bearing, or want answers that I don't have.

           

          If only that was the case with my family.  My dad's a F-ing prima dona and I just didn't want to mess with personalities.

           

          I do enjoy going back to visit with the nurses that saw me through my journeys with induction and SCT.  They don't always recognize me with hair but they always act like they do.  During one of these visits I saw the nurse who got me set up for my first night in the hospital.  He shook his head and said it was so nice I came back, that hardly anyone does.  These folks live with us for months and then never know how things wind up...I try to get back whenever I can.

           

          It's too bad that there is no way to test drive hospitals for stuff like this.

           

          That might be the best idea I've ever read. 

           

          Blessings

      • Re: Are all bone marrow transplant centers equal?
        JBT Registered Users
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        Tex you said it...family dynamics are definitely a hoot!  Believe me their was serious consideration given to MDA.  In the end I stayed at BUMC as much for my family as myself.  My parents are older and I knew they would not be able to come see me and I have 4 children and am divorced so they probably would have never seen me and I could not have that.  This thread has made me rethink those days and looking back I know I made the right decision.  But it's difficult in the moment when they whisk you away and the whirlwind starts. 

         

        Jen I hope you guys find the right place for you.

         

        Jt

  • Re: Are all bone marrow transplant centers equal?
    bmtinfonet Registered Users
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    There are several good ways to get information about transplant centers.  BMT InfoNet (Blood & Marrow Transplant Information Network www.bmtinfonet.org) has an online transplant center directory that is helpful. There you can learn how many transplants a center has done by type (ie. autologous, related donor, unrelated donor, cord blood, nonmyeloablative, etc.) as well as whether the center if accredited by the Foundation for Accreditation of Cellular Therapy. There is also helpful information like general age restrictions, donor match criteria etc.  As someone else said, Be the Match also has a directory with helpful information.

     

    You need to be careful when comparing one center against another, particularly if you are using "success rates" as your guide.  A successful transplant can be defined in many ways, and you need to understand the definition the center is using.  It may mean the person is alive and walks out the door of the transplant center OR it might mean they are alive and disease free 5, 7 or 10 years later.  You can read more about this in BMT InfoNet's book for patients Bone Marrow & Blood Stem Cell Transplants:  A Guide for Patients.

    • Re: Are all bone marrow transplant centers equal?
      Tex Registered Users
      Currently Being Moderated

      I liked your list but it still lacked some of the information that my insurer provided which helped me make my decision.  While I understand that simply using a term like "successful" can be misleading, the list I had provided 100 day and one-year success stats.  That helped me, along with the number of transplants performed, helped me make my decision.

       

      I wanted to know how many people they were getting out the door standing, not just how many they brought in, though that's an important statistic, too.  I didn't go on with the government link but wanted to out a bug in your ear about it.  It's been awhile since I've been to your site.  Looks like it's had a bit of a facelift.

       

      I really appreciated the work ya'll do while I was getting ready for my SCT.  Thanks.

       

      Blessings

      • Re: Are all bone marrow transplant centers equal?
        bmtinfonet Registered Users
        Currently Being Moderated

        I'm glad you were able to get that additional information from your insurance company. Not everyone is so lucky!

         

        That being said, I would urge others who are considering a transplant to be sure you understand exactly what those 100 day and one-year survival rates really mean, as they too can be misleading if not fully understood.  Just because transplant center A has a better 100-day survival rate than transplant center B, it does not necessarily mean it is a better center. Some centers only accept prime candidates for transplant - younger folks, people whose disease has not progressed, those who have responded well to prior therapy, etc. - and thus, one would expect their survival rates to look better than a center who accepts candidates who are not as fortunately situated - older, advanced disease, resistant to prior therapy, less well-matched donor, etc. Likewise, you want to be sure the statistics you are looking at reflect patients with your same diagnosis, disease stage, etc. since your likelihood of survival various depending on a whole host of factors.

         

        For people considering a transplant with an UNRELATED donor, the NMDP's directory is helpful in leveling the playing field for that analysis.  In their directory, they have something called a Center Specific analysis that predicts what the survival rate should be at the center, taking into account all the variabilities of patients they treated.  They then look at the actual survival rate and say whether it was within the range expected by the statistical analysis. 

         

        One final thing I would suggest to folks:   The transplant center (ie the bricks and mortar) don't transplant patients:  the transplant TEAM does.  A center have have wonderful stats or lousy stats, but you want to be sure they reflect the experience of the team that will be treating you - not some team that has had a lot of changeover or moved.

         

        That being said, there are a lot of great programs out there and fortunately, for most people there is no one Mr. Right, as far as centers go. There are usually several good options, all of which will provide great care.

         

        BMT InfoNet can provide personal counseling by phone to anyone who has a question about how to evaluate the experience reported at a center. Our toll free number is 888-597-7674.

         

        Sue Stewart (23-year transplant survivor for AML and Executive Director, BMT InfoNet)

        • Re: Are all bone marrow transplant centers equal?
          Tex Registered Users
          Currently Being Moderated

          I completely understand what you were saying here.  I don't think I mentioned that my insurer got me the overall transplant stats and those specific to AML.  That was an interesting comparison, though it didn't seem anything was really out of proportion on the AML page and the general numbers page.  General success seemed to overlay into success with each disease, at least for AML.

           

          The real number I looked at was the number of transplants done in the past year and in total.  MDA and the Hutch were on top there, of course.  Ultimately, I boiled it down to Baylor (location), UCSF (which actually had higher success rates than MDA or Seattle but not as many done) and the Hutch (which wasn't Houston in August).

           

          Looking at the stats did help me, if only in feeling like I'd made a logical decision.  I agree that the weight of those numbers should be explained to patients using them but it gave me something to hold onto, like I wasn't just whistling in the dark.

           

          One issue I'd take is that, at least in Seattle, you don't get to meet your specific team before you're admitted.  The consult is done by a doctor who's drawn that duty, so far as I can tell.  I did get a gut feeling that the SCCA was well beyond competent and I felt most confident going there.  Sometimes one might have to go by the general feeling instead of actually meeting the exact people who will be treating them.

           

          In fact, I was glad I never had to deal with the guy who did my consult.  He scarfed the hell out of me.

  • Are all bone marrow transplant centers equal?
    jenzen Registered Users
    Currently Being Moderated

    We love the test drive idea. We love it so much we are doing a bit of a test trail now. After meeting with the doctor at the James we decided to go ahead and do her first consolidation chemo here while we are waiting for a donor. That was we can get an idea of how the hospital runs doing some that is not as serious as BMT. We are on day four of her HiDAC consolidation and so far so good. There communication amongst the staff is great. We don't have to repeat things over and over and they are on time of her medications etc..  We will go tour the bone marrow unit before we leave on Saturday.  Then it is home to recover and decide if this is really where we want to be for BMT or not. One aspect that we really like is that they are doing a lot of FLT3 research here and are very specialized with their care.

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