How did you choose your transplant center?

[mausmish]

This is directed to those who've had BMT's or are awaiting BMT's. How did you choose your transplant center? Did you choose the nearest? Did you look for one that had better success stats or more cases similar to yours despite others being nearer? Did you visit many centers before you chose? Anything else that went into your choice? Thanks!

[squirrellypoo]

My experience probably won't be very helpful for you since the UK's leading specialists and researchers in AA and MDS (Prof Marsh and Mufti) were at King's, which is right around the corner from where I live. And Kings do more transplants than anywhere else in the UK (and one of the top centres of the world) so I didn't even consider going anywhere else. It was really, really nice being so close to family and friends, as it meant lots of people could just pop in to keep me company without having to stay in a hotel.

Being nearby also meant that I could live at home for a long portion of my post-transplant time - at one point I was ONLY released from hospital because I promised to come in to outpatients every single day (M-F) for an IV drip, which ended up carrying on for a full six months. So as hard as the daily commute was (my fiance had to drive me in since you can't use public transport), it was lightyears better than being in a ward for that time.

So if you need to have your transplant far away from your home, realise that you'll need somewhere to stay in the area for several months after the transplant itself, whether that's with friends or at an extended stay hotel. My 6 months of daily appointments was a bit unusual, but it's nothing to go in 3 times a week for 2-3 months post-transplant.

[starz]

I also am from UK. I found the top MDS specialist in the country, in the top hospital and asked for a referral for my husband.
It isnt close for us, so we did a lot of travelling. I have rented a flat as he has just had the transplant, and we will stay close by for 3-4 months.
My logic was to just go to the top, and even if it will cost more in time and money, you will never be able to say 'I wish we had gone there'.
Starz

[Neil Cuadra]

Karen,

I suggest that you take a look at the "Choosing a Transplant Center (http://www.marrow.org/PATIENT/Plan_for_Tx/Choosing_a_TC/index.html)" page of the National Marrow Donor Program. They give guidance about what to look for and provide statistics about transplant centers.

[mausmish]

Thanks, Neil. I'd been through all the literature. I was more interested in people's personal stories. I know in the end everyone's circumstances are different but I love hearing the anecdotal accounts from the different perspectives.

[Laura]

Hello,

I debated for a long time between Seattle and my own health care provider Mayo Clinic. I went back and forth. Seattle did the most transplants and had the best doctors for AA. However, Mayo Clinic was close to my house, home, family, and support system. When it came down to it, having my home and support system close by was one of the major reasons why I choose Mayo. I also was very comfortable with the physicians and their plan of care. They were having a trial using Campath instead of ATG. I wasn't keen on using ATG. I had done it twice within the previous 9 months and I had reacted pretty bad both times. I just felt very comfortable with the care and the staff. Going through the transplant, I was so thankful to have my family and friends around. They were valuable and more valuable then I have thought prior to transplant. I am so thankful that I did my transplant here and would do it again without a second thought. Sometimes having the best physicians and the best place isn't always enough. It's nice to have your home, family, and friends too.

Laura

[mausmish]

Hi Laura - I know what you mean. I'm still undecided but am leaning toward close to home with Johns Hopkins or University of Maryland. I'm also getting a consult at The Hutch in Seattle next month. Thanks for your reply. Karen

[Jayceechic]

I was only recently diagnosed with MDS so I'm in the process of researching locations. I live in Maryland and was treated at NIH for NHL in 2007, but since I found out today my brother isn't a match I have to look at other options since NIH doesn't perform un-related transplants. I'm looking at Hopkins, based on a co-workers recommendation and experience, and MD Anderson in Houston because I have family there and because they are supposedly a good transplant hospital. Based on a recommendation from another transplant survivor who had a MUD BMT, I'm also considering Baylor in Dallas.

I'm overwhelmed with my choices and my head hurts from thinking about it all. What if I make the "wrong" choice.

[Laura]

I use to worry about making the wrong decision in regards to choosing a place for transplant. But now I can honestly saw there is no wrong decision. If you do your research and pick a place based on where you thought was best, then you are making the right decision. You will never know all the what ifs and so you just need to make the decision based on what you think is best and don't look back on that decision.

This probably doesn't make sense but it does in my head :)

Laura

[Neil Cuadra]

Angela,

For considering where you might get a transplant, I suggest that you take a look at the advice on Choosing a Transplant Center (http://marrow.org/PATIENT/Plan_for_Tx/Choosing_a_TC/) from the National Marrow Donor Program. They'll be the ones looking for a matched donor for you, since unfortunately your brother didn't match you. They have posted the number of transplants done by each center and other statistics that can help you narrow down your choices.

Check with your medical insurance company to see if you are covered even if you go to an out-of-state transplant center, and whether there are any restrictions on coverage you need to know about.

Being near home or family is important so I'm glad you are considering that factor. If it will help, look at the Treatment Center Map we've provided for patients, to see where some of the treatment centers likely to have experience treating MDS are located.

[Debbie W]

My husband really wanted to stay closer to home and that definitely had an influence, so we have stayed with Sloan as opposed to going across country to Seattle or even to the NIH. He is now undergoing induction therapy at Sloan and then hope to move to transplant in late September or early October if his blast count is under 5%. Please post about your consultation in Seattle.

Thanks in advance and best wishes,

Debbie

[mausmish]

I just got the results from my bmb after 7 months of Vidaza. My blasts are still holding at slightly over 5% and i still have the complex chromosome abnormalities but they are affecting only 1 cell in 20 as opposed to 14 in 20 before. My blasts were 17-20% when first diagnosed in January. I don't have a donor yet so am relieved to be holding steady. I've gotten my consultation with The Hutch all lined up for the 24th and for Johns Hopkins as soon as my slides are returned from Seattle. I definitely understand the feeling of being overwhelmed with the weight of the decision. Laura, i love the wisdom of your words. Thank you. I'll let you know my impressions after the consults. One thing I feel better about already is that my local hematologist and my oncologist at University of Maryland are both extremely supportive of my decision to seek additional opinions. I like and respect them both and didn't want them to feel offended. They both said for a life altering decision like this, it makes sense to explore different options. They're also both thrilled with my progress with Vidaza. Initially, my prognosis looked very poor. Don't ever give up hope.

[Laura]

Karen,

Please do let me know how the consults go. I will be thinking of you. Glad I could help.

So glad to hear your blasts are down and your cells are looking better!!

It is great that your local physicians are supportive of second opinions. It makes it easier to continue to see them while you are searching for your answers of where to go.

Please let me know if you have any other questions.

Laura

[mausmish]

I live in Maryland and am currently being treated through University of Maryland. For my MUD SCT/BMT, I'm also considering Johns Hopkins because it is an excellent center and close to home and The Fred Hutchinson Center in Seattle because they were the first to do the procedure and do many each year. Also, they come highly recommended by many long term survivors.

I had my consultation in Seattle a couple of weeks ago, and it went very well. The staff was friendly, timely, and knowledgable, and the facilities beautiful. The doctor spent 90 minutes with my husband and me and answered most of our questions without our even having to ask. It was apparent he had reviewed my records and slides and familiarized himself with my case before we got there. They have a couple of promising clinical trials for which I might be eligible that are not available closer to home.

My appointment at Johns Hopkins is Sept. 23, after which I'll make my decision about where to go (assuming I'll be abe to find a donor!). The decision will be difficult but i feel very fortunate that I have so many good alternatives to choose among!

[Laura]

Hi Karen,

So glad to hear your consultation went well! That is exciting about the clinical trials you could possible be in. What are the advantages to the clinical trials? What are they trying to "find", "improve", "make better", or I guess I mean, what are they trying to research specifically with the trials you were looking at. Are they brand new trials? Have they had success so far? Just different things to think.

I did a trial that Mayo was doing. I am so happy I did the trial and would do it over again if I had to.

I had a very hard time choosing between the two places. I never did an official consultation at Seattle. I did do a phone consultation.

Do you have anything that you are looking at specifically in deciding?

Do you have a website or anything you update?

But do keep us updated here too.

Laura

[mausmish]

Hi Laura,

I'm not looking at any specific criteria in a transplant center but rather am looking with an open mind at what each facility has to offer that might be relevant to my particular case. Since I'm within an hour of the renowned Johns Hopkins, it made sense to look there. University of Maryland is also very good and equally close - my hematologist sent me there initally because they could see me more quickly, and I was at a critical stage then (before the Vidaza treatments). Seattle came so highly recommended by many that I wanted to give it a try, not to mention that it was a great place for a summer vacation.

My doctors are concerned about my being at high risk for a post transplant relapse due to the nature and number of my chromosome abnormalities. The trial offered at The Hutch in Seattle uses targeted radioactive antibodies for pre-transplant conditioning to deliver a higher dose of therapy directly to the diseased cells in the marrow and spleen while tryng to minimize the risk to other organs. The procedure is very interesting and is not offered anywhere else. I'm definitely considering participating but want to first see what Hopkins has to offer. The obvious drawback to Seattle is the distance from home!

If only we could know how long the Vidaza will continue working, it would be great to be able to wait another year to see what new treatments are on the horizon! However, all of the doctors I've talked to so far are urging me to move forward with the transplant soon while I'm in partial remission (blasts at 5-8%). There's no way of knowing how long this will last.

I do have a Caring Bridge page but it has not been kept up to date. My most current info is here.

Thanks for your interest, and I hope you're doing well!

Karen

[Debbie W]

Thanks for the update on your transplant center search. Glad to read that you have had good success with the Vidaza in reducing the blast count, wishing you continued success.

Best regards,
Debbie

[Laura]

Karen,
Wow that trial sounds really, really interesting!!

Thanks for the info, it was great to read.

Yes, if only we could see the future, oh how that would help us decide many things when it comes to this disease!

Sounds good on the CB site, glad you keep us updated on here then :)

Laura

[mausmish]

I have posted my background story and some photos if anyone wants to put a face to a name.

http://www.caringbridge.org/visit/mausworks

Karen

[Debbie W]

Thanks for the link and for updating us on your search for a transplant center.

Best regards,
Debbie

[Susan L]

"If only we could know how long the Vidaza will continue working, it would be great to be able to wait another year to see what new treatments are on the horizon! However, all of the doctors I've talked to so far are urging me to move forward with the transplant soon while I'm in partial remission (blasts at 5-8%). There's no way of knowing how long this will last."

Karen - I read your story and am happy for the success you are making on the Vidaza ad I also am on Vidaza and just finished 9/3. I too have multiple chromosome changes and blasts now are only 5 - 6 %. The only side effects so far for me are still tiredness but no way as much as w/Dacogen. I am not scheduled for any other treatment except for the Vidaza to see what happens. Do you have a family member for the SCT? I wish you continued success.

[mausmish]

Thanks, Susan. Happy to hear your 1st Vidaza cycle went well! I am a little tired, too but not bad. I don't have a related donor, am in process of seeking MUD. Where are you being treated? (sorry I don't remember.)

[Susan L]

Thanks, Susan. Happy to hear your 1st Vidaza cycle went well! I am a little tired, too but not bad. I don't have a related donor, am in process of seeking MUD. Where are you being treated? (sorry I don't remember.)

Hi - I am being treated by GA Ca Specialists here in Athens, GA. They are a fantastic group I was fortunate to get with. 7 yrs ago I had treatment at the NIH w/Dr Sloan. ATG treament that lasted till this past April. I also did not have any chromosome abnormalities then, now I have multiple chromosome abn. My report said that there wasnt any normal ones in the specimen received. Still all confusing to me. May I ask - what insurance do you have?

[mausmish]

Susan, i am fortunately double insured, United Healthcare and Tricare standard. Regarding the chromosome abnormalities, it sounds like you're talking about the number of cells affected rather than the number of abnormalities (or perhaps both). For example, in my first biopsy I had 14 out 20 cells that were abnormal. Each of those 14 cells had multiple abnormalities such as 5q deletion, trisomy 8, and several others as well as an unknown marker. When I had my biopsies redone 3 months and six months later, only 1 cell in 20 was abnormal but that cell had all the same chromosome abnormalities as before. I was very confused initially because I'd never heard of any of this. I got a copy of my cytogenetic report and then found a site online that explained how to read it, which helped a lot. I still find the reports difficult to read because of the medical jargon. I'm a math/computer geek so this is alien to me.

It's great that you have a team of doctors you're comfortable with. That's so important. I've been fortunate in that respect, too.

[Debbie W]

If you still have the link that helped decipher the BMB report would you post it for me and possibly others as well.

Thanks,
Debbie

[Birgitta-A]

Hi Debbie,
Here is a link to a table with different kinds of chromosome aberrations. The report is from 2007 and the patients were examinated before 2005. That means that the survival times are too low because today we have much better supportive care and treatment with Vidaza, Dacogen, Revlimid, Epival and so on.

I for example have one aberration on chromosome 12 called -12p that is a so called "good aberration" especially when it is the only aberration but I have another aberration too called -X that is not so good but not so bad.
http://bloodjournal.hematologylibrary.org/cgi/data/blood-2007-03-082404/DC1/2
Kind regards
Birgitta-A
71 yo, dx MDS Interm-1 May 2006, transfusion dependent, Desferal and Exjade for iron overload, Neupogen for low WBCs, Thalidomide and Prednisone for fibrotic bone marrow, asymptomatic

[Susan L]

Thank you for posting the web site for help w/reading the BMB. I am still confused - it seems also that I am having a real problem with concentrating lately - oh dwell - my report says "Identified abnormal female chromosome pattern with a gain of choromosome 16, a deletion of chromosome 19; a rearrangement of chromosome 21, and no normal cells were observed." Then there is a lot of talk about the CD45 increased, cd14 cd117 cd10. Its all confusing. Wish you could find out about each thing one at a time. Take care

[mausmish]

Wiki has some explanations about the lingo, although I don't claim it's an easy read. The CD45, CD14, etc. are referring to proteins that help identify types of cancer and other cell abnormalities. You can also try looking them up in Wiki.

http://en.wikipedia.org/wiki/Chromosome_abnormality
http://en.wikipedia.org/wiki/Karyotype
http://en.wikipedia.org/wiki/Cytogenetics
http://www.informaworld.com/smpp/content~db=all~content=a713544803

http://en.wikipedia.org/wiki/Monosomy (loss/deletion of chromosome)
http://en.wikipedia.org/wiki/Trisomy (addition of chromosome)
http://en.wikipedia.org/wiki/Chromosomal_inversion (rearrangement)
http://en.wikipedia.org/wiki/Chromosomal_translocation (translocation)

[Susan L]

Thank you for all the web sites - I will check them out and try to understand each thing alittle better. Things really are complex. Hope you continue to have all success.

[Debbie W]

Thanks so much for the links! Things to read while I'm waiting :)

Seriously ... it is appreciated.

Debbie

[mausmish]

Debbie,

It sounds like you and Mike are in very good hands, and Mike is certainly fortunate to have your devoted care. Maybe it would be a better time for some lighter reading to help relieve the stess. Sometimes, I have to back off from all the medical information swirling around in my brain or I start feeling overwhelmed with the weight of the decisions.

I think it's going to feel like things are moving too fast no matter what the timing. You're doing better than us with the decision making. It took me six months to accept the idea that I needed to get the transplant, even with my doctors assuring me that sooner is better than later. My husband is still struggling with the idea, wondering if we should wait since the Vidaza is doing so well. I don't think it will ever seem like the right time. But we have caring, experienced oncologists and excellent facilities, and the time comes when we just have to move forward and accept that what we are doing is right, no looking back or second-guessing ourselves or our physicians. Of course, we continue to monitor and ask questions but we have faith in what we're doing.

Please keep us posted. It is a wonderful, supportive group here.

Karen

[Debbie W]

Sorry I missed this post until now.

As much as I want to stay on top of things I have not looked at the links. You are right about having to back off sometimes otherwise we would certainly go nuts. I did find an article about elevated Ferritin levels this afternoon and I'll post it later in I hope an appropriate thread.

I think the decision making process was helped along by outside influences who thought it was worth the risk - it is still very scary, there are happy endings and not so happy ending. You are using your time wisely in speaking with a variety of centers and sharing what you learned for others to read. Unfortunately all that information can also be confusing for you.

Will try and post as we move forward and may the Vidaza continue to work,
Debbie

[mausmish]

Debbie, I feel a special link to you because your husband Mike and I are close in age and his diagnosis sounds quite similar to mine...I can imagine what a big shock it was for you both to find out he was so ill when he seemed so healthy. I'm also married to a Michael :-). We were stunned speechless in January, needless to say. I'll be looking forward to following Mike's progress. Don't forget to take care of youself, too! Karen

[Debbie W]

I noticed the similarities as well and yes it was and is a shock for any of us to suddenly realize the seriousness of just feeling tired and looking a little pale. It took me telling my husband that he looked pretty bad before he called the doctor. Unfortunately too many people brush these things off as just getting older, now I tell everyone that yearly check ups and blood work are important.

Thanks and let us know how the upcoming meeting goes.

Kind regards,
Debbie

[mausmish]

I had my consultation at Johns Hopkins today and, like The Hutch consult last month, it went very well. The staff was friendly, timely, and knowledgable, and the facilities beautiful. The doctor spent about an hour with my husband and me and answered most of our questions without our even having to ask. He encouraged us to interrupt whenever we did have questions, and answered all that we asked in clear terms. Although I was disappointed that they aren't offering anything like the radiolabeled antibody trial that's being done in Seattle, they do offer encouraging pre- and post-transplant regimens targeted at reducing gvhd and trying to prevent relapse. In the end, the fact that they are so much closer to home weighed heavily since all else seemed close to equal between the facilities. I like the idea of my transplant center being an hour away instead of 3000 miles if issues arise in the long term, post-transplant. Also, it will be much easier on my caregivers and other local family for me to stay here. Again, I am thankful for the opportunity to have so many excellent centers to choose among and good insurance coverage as well. I'm very happy that I did all the consultations. It made both my husband and me much more comfortable with our ultimate decision.

[Laura]

I am so glad you feel at ease with the decision you have made! That counts heavily. I am happy to hear this second consultation went well and you were happy with it too.

So what is the plan from here?

I know I said this before, but I was extremely grateful I went with the facility closer to my home. Having the family, friends, and support and my own house helped greatly!

Laura

[mausmish]

My donor search is being transferred from University of Maryland to Johns Hopkins and then it's a matter of continuing with my Vidaza treatments and waiting for a matched unrelated donor. All of my doctors think I will not have trouble finding a good match since there are more than 70 potentials. I'm not sure yet what particular conditioning regimen will be used but will keep this thread updated when I know more. I'm considering their Outpatient Transplant Program if my insurance will approve:

http://www.hopkinsmedicine.org/transplant/Programs/bone_marrow/#team

I slept great last night after finally making this decision that has haunted us for so many months.

[Debbie W]

It is great that you finally made a decision and also that there are many potential donors!!!

Best of luck for a quick treatment,
Debbie