How did you choose your transplant center?

[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.hematologylibrar...3-082404/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/con...ent=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/trans...e_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