22 replies to this topic

[shof6405]

Hello!  I was diagnosed with CML in April 2013.  I will not go through all my history at this point.  I live in the Louisville, KY area.  Roger Herzig, MD is my MD at James Brown Cancer Center which is affiliated with the University of Louisville hospital.  My health insurance will not cover me to have a BMT at U of L.  I have a list of hospitals which are in my network.  My MD said it was important to be close to my support system, so he recommended Indiana University in Indianapolis, Vanderbilt in Nashville, and UK Markey Cancer Center in Lexington.  My question for everyone out there is what is your experience with your facility for BMT and does anyone have any experience with the three I listed?  I do want to be close to my family, but I also want to get the best possible care.  Thank you!

Annette

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[Trey]

It would be important to know why you are being told you need a BMT for CML since 98% of us do not require it.  The primary reason so soon after diagnosis (5 months in your case) is usually diagnosed in Blast Phase CML; so is that your situation?

Otherwise, there is no such thing as the best transplant facility.  Some are better and some are worse in certain categories, but many are pretty much the same according to stats you would be interested in.  And one closer to family could be better for you than one far away.  Anyway, here is a resource for BMT stats, but I would caution that the numbers do not tell the entire story since some facilities transplant high risk patients while others do not, which can skew the survival stats:

http://bethematch.or...Statistics.aspx

I wrote and Introduction to Bone Marrow Transplant (BMT) paper which attempts to explain BMT/SCT basics in understandable terms:

http://community.lls.org/docs/DOC-1375

[LottieR]

Hi and welcome,

Firstly, i think this post might get more responses from more informed people on the bone marrow transplant board vs. the CML board. Once a person is doing a transplant, their underlying condition really becomes less important because the transplant itself really replaces the original cancer diagnosis.

Secondly, an introduction. My name is Lottie, and my husband Nate is the patient. he was dx with ALL 12/22/10 and had a SCT 3/2/11. He is doing amazingly well now. He is 27, we live in NH, and he gets treated at Mass general in Boston.

And thirdly, and I hate to say this, but Trey is just flat out wrong when he said "there is no such thing as the best transplant facility.  Some are better and some are worse in certain categories, but many are pretty much the same according to stats you would be interested in."

No. That is 100% wrong. Trey is a great CML specialist on these boards, but (not trying to start anything here) his transplant information is flawed at best. Another reason you should mosey on over to our BMT board

Anyways, there are better transplant facilities. What you should look for is the facility that does LOTS of transplants every single year. Looking at the ones you've listed:

Indiana University did 560 transplants between Jan. 2010 and Dec. 2011. So, roughly 280 a year. That's pretty darn good. Their survival rate is well within average, so that's good too.

Vanderbilt did 620 in that time frame, so 310 a year. Their survival rate is also average.

Markey only did 129 over 2 years, which is significantly less. But, survival was average.

So that's what you're looking at. More experience means that the team will be better suited to care for you should to encounter any hiccups. If I were you, I would choose either Indiana U or Vanderbilt, and between those two, probably pick the one you are most comfortable with and possibly closer to.

Now that being said, there are MANY MANY MANY people who travel to places like MD Anderson in Houston or the Hutch in Seattle because, hands down, those places are the top transplant centers on the country. But that is a personal decision and one only the patient can make. I think you have some very good options closer to home and maybe set up some consultations so you can meet the team and get a feel for it. Bottom line: follow your gut.

My husband had his at MGH and I wouldnt change a thing. We love his doctor, his nurses, the hospital, everything. We are comfortable there and we trust them, and that's important.

So again, try and find your way over the BMT board; we have several CML people over there who post from time to time. But, for transplant-related questions, that forum is definitely the place to be!

Good luck

-Lottie

[acb]

Hello,

I live in southern Indiana (used to live in Louisville) and Dr. Herzig (Roger) was my first CML doctor back in July 2010. In 2011, I had to switch to a new doctor and facility due to insurance reasons too. (I actually switched twice because I did not like my second place at all -- doctor was okay but the rest was an unorganized mess.)

I agree with Trey, it would be helpful to know what your history is or at least what drugs have been tried, blast %, etc. I know from personal experience that Dr. Herzig would not recommend a BMT unless it was a last resort. When I was diagnosed, I discussed the option of a BMT with him since I was fairly young and he said it should be a very last resort for CML since there are so many other options (and he is a BMT specialist). I also know that Dr. Herzig is progressive -- he started me on Sprycel for first line use before it was even FDA approved, so I am sure he is willing to try any and all available drugs. He would also be willing to consult with CML experts to exhaust all options.

With regard to your insurance issues, have you tried talking to your insurance company? Do you have a maximum out of pocket for out of network expenses? If you do have a maximum out of pocket for out of network (which I assume U of L is allowed but is just out of network), I would seriously do the math to see if it is worth going to an in network hospital. With traveling expenses, convenience, comfort of home figured in, it might be worth the difference to pay out of network. Also, you might explain your situation to your insurance company. I know mine has a process you can go through to try and get out of network paid as in network for certain situations. I once had to do it (actually I had to do an appeal) because my second oncologist's office sent my PCR test to a lab outside my network (for no reason other than stupidity).

Good luck! And if you want a "local" to talk to, let me know here and I will share my contact info with you (email, etc.)

[Susan61]

Hi:  I think the doctor you see is going to send you to who they are familiar with as far as their expertise and results.

Being I did my clinical trial in  New York, and was under the care of a doctor who has treated CML for many many years he told me that if the Gleevec did not work for me and I had to go for a BMT he would not let me go anywhere but

Fred Hutchinson Hospital.  I think they are in Boston.

    I did not have to get the BMT, as the Gleevec did its job for me.  I did go to various places for consultations, and I found they were rushing me into a BMT.  I just felt I needed to try every other choice first to see the best way to go.

You have to be your own advocate for your care, and weigh out all the choices.

   I do not know what you are doing at present, but just being diagnosed in April should give you some room to first see if a TKI works for you.  You did not say you were in accelerated or blast phase.  Maybe I missed some of your postings, and maybe I do not have all your information.

  I was diagnosed in Dec of 1998, and my treatment at that time did not work for me.  I did not go on Gleevec until Oct of 2000.  I was kept stable on Hydrea until I could get into the trial.  I just feel their are so many options before jumping into a BMT at any hospital.  I wish you the best in your decisions.

Susan

[Tex]

Trey wrote:
It would be important to know why you are being told you need a BMT for CML since 98% of us do not require it.  

Not really. 

This might be mildly relevant but it's hardly important in transplant center selection.  It comes towards the bottom of the decision making list to actual transplant patients.

[Tex]

Lottie wrote:
Firstly, i think this post might get more responses from more informed people on the bone marrow transplant board vs. the CML board.

I would've thought so, too.  However, Annette posted this on the transplant forum a few days ago and I was the only one to respond (http://community.lls...e/166754#166754). 

Go figger.

ndiana University did 560 transplants between Jan. 2010 and Dec. 2011. So, roughly 280 a year. That's pretty darn good. Their survival rate is well within average, so that's good too.
Vanderbilt did 620 in that time frame, so 310 a year. Their survival rate is also average.
Markey only did 129 over 2 years, which is significantly less. But, survival was average. 

The tolerance for my insurance company when I had mine was 50 a year.  All three of those would qualify just fine by those standards.

[LottieR]

Oh wow my apologies for not seeing it there! this website is acting so weird for me lately, not letting me sign in, not letting me reply, and not letting me toggle between pages...I think others are having the same issue. Hopefully once it clears up more people will respond!

[Tex]

Do you use IE?

[LottieR]

I do, but it wont let me on at all any more with that so I had to get firefox. i am able to at least get on here now, but still having some glitches...

[Tex]

Susan61 wrote:
Fred Hutchinson Hospital.  I think they are in Boston

Dana Farber is in Boston.  The Fred Hutchinson Cancer Research Center is part of the Seattle Cancer Care Alliance in, well, Seattle.

Not that any of this is important.  Just an FYI.

[Tex]

Doug (DJLawman) put a post about his issues with IE.  Microsoft found an issue with IE that seems to touch on the things Doug brought up.

I'm actually saying IE might be the issue.  I use Firefox and haven't had any more troubles with this site than usual.  You should go to Doug's thread, though.  The more pressure, the more likely LLS will do something to fix it.

[Trey]

I am always disappointed when someone says I am 100% wrong but does not  educate me on why.  How else will I be able to learn from others who know more than I if they will not educate me?  So very disappointing.....I thought I was going to learn something today. 

[LottieR]

Well, like I said, I'm not trying to start some argument or a battle to see who can be more condescending. This thread is about answering the questions of the poster, which I did. But, since you posted above, I'll respond.

I wrote: "

"And thirdly, and I hate to say this, but Trey is just flat out wrong when he said "there is no such thing as the best transplant facility.  Some are better and some are worse in certain categories, but many are pretty much the same according to stats you would be interested in."

No. That is 100% wrong. Trey is a great CML specialist on these boards, but (not trying to start anything here) his transplant information is flawed at best."

I then went on to explain how and why you were wrong in saying: "there is no such thing as the best transplant facility.  Some are better and some are worse in certain categories, but many are pretty much the same according to stats you would be interested in."

I wrote about how experience matters. I wrote that one transplant center can be better because they do hundreds of transplants every year. Then I took the 3 specific centers the poster mentioned and broke each down into how much experience they have annually doing transplants. Then I said that there were two stand-out winners in that group.

So, saying I called you wrong without saying how or why was, well, wrong.

And again, I'm not trying to start some online argument with you here because this is a support group, and you and I both do a lot of supporting. But, and this has been said before when you gave flawed transplant information, it's best to stick to what you know.

[Susan61]

Thanks Tex:  He probably did say Dana Farber.  It was years ago, and my memory is not what it used to be LOL

[hannibellemo]

Tex,

I know you are knowledgeable in all things transplant because you've had one (and survived to tell the tale)! But, on this discussion board we do ask why someone is being told they need a transplant because there are so many docs out there who don't know much about CML. I don't know if this doc falls into that category or not, but the question needs to be asked here because there are so many other options. Not so with other leukemias.

If shof6405 has made up his/her mind about the transplant with all the information needed, then so be it; the question would best be answered on the transplant discussion board. However, in our experience having all the information is seldom the case.

What I'm saying is there is no need for anyone to get snippy! We all just want to help those who ask.

Pat

[Trey]

Annette,

I realize from your previous posts that you have been on a couple CML drugs and are now on Iclusig waiting for kinase mutation test results.  The results will be important to determine future direction in treatment.  So I assume your Onc is just trying to plan ahead, which is very reasonable, and why the Phase at diagnosis is also an important issue in CML treatment planning.  Hang in there and let us know how the mutation test goes and then we can help some more.  The Iclusig has not had time to show if it will work for you, so let's hope it does the job.  It is not unusual to fail a couple drugs then find one which works.  But doing some BMT preliminary planning such as matching and potential facilities is also useful when treatment does not go smoothly.  We all hope things will go smoother for you.

[shof6405]

I want to clear up a couple of things.   I am on Iclusig after being on Gleevec, Tasigna and Sprycel.  I am still in the chronic phase.  My MD is wanting to have the preliminary things necessary for a BMT just in case.  He said that once it is decided that one needs to be done that it takes 2-3 months for it to begin. 

I did post on the BMT board, but only received one response.  I decided to post it on the CML just to see if there were more people that could share their experience.

I don't want anyone getting upset with someone else due to my post.  This is a place that all should be able to share without fear of being made to feel stupid, etc.

Thank you to everyone that has responded.  I will let you know what transpires in my case.

By the way, is any one in this area (Louisville/Southern Indiana) going to the Light the Night walk.  My family and I will be there.  We live in Charlestown, IN.

[mariebow]

shof6405, I am so glad you posted this, and I hope and pray that things go well with you.  There are people on this site, that loves to help and be that person you can turn to when you need answers.  I have found friends and someone who listens to what I have to say, and comments even though it is kinda comes kinda blunt and to the point, but if everyone agrees with everybody just to make waves and not give their opionion on treatments,ideas,home remedies then it would just another website. But it takes all kinds of responses that everyone feels is their best because everyone is different,have different treatments,experience different reactions and their own experiences.  I came to the right place, when I came here.  Also I want to tell everyone my ribs are feeling a lot better and I can do more things now.  Love Yall

[GerryL]

Hi mariebow,

Great comments.