best care center in Boston?

[mac]

I am newly diagonosed with hypoplastic MDS and am currently seeing an MD at Beth Israel Deaconess Hospital in Boston. Does anyone out there have experience at Beth Israel? I am considering getting another opinion at Dana Farber, which is considered one of the best centers for this disease. Not sure what to do at this point. Thanks for any info!

[Andy R]

Hi Mac,

I was diagnosed with MDS in March and was referred by my local oncologist to Dr. Antin at Dana Farber.

Dr. Antin is the department head and senior MDS/ALS researcher at Dana Farber.

Both he and his team have been excellent.

They are very thorough in their explanations and really have their stuff together.

I cant say enough about them. Especially the coordinating nurse Toni Dubeau.

Assuming you go with Dana Farber, they will treat you for the transplant at Brigham and Womens but your care is managed through Dana Farber.

I am actually +8 days from my transplant and in the oncology ward right now.

The nursing staff and their programs have been great all around.

This is the place i would recommend you go if you are addressing treatment.

Please take a look at my blog located at http://andy-mds-recovery-journal.blogspot.com/ for step by step information on how things are going.

[mac]

Thanks so much for the information. If my insurance allows it, I think I will go to Dana Farber for a second opinion. Your experience confirms what I’ve heard from others (albeit with different cancers). I wish you the very best with your transplant — sounds like you’re being well taken care of. I’ll check out your blog too. Thanks again!

[mac]

Andy,

I read your blog — liked it very much, and it’s great that you’re constantly updating it. Lots of good information, and humor too. I’m rooting for you. If you don’t mind my asking, what is your age? I’m asking because I’m younger than many MDS patients (57), and I notice there are several others using this forum, too, who present at a younger than typical age. Are our cases/treatment different than older patients? Don’t know…

Thanks,

mac

[Andy R]

Hi Mac,

I am 45. I actually had my birthday while in here.

If a patient is significantly older, doctors may not put him/her under the rigors of chemo and the transplant.

Instead, they will maintain levels through transfusions and drugs.

[Mary4Mike]

Hi Mac,

We (my husband) were never treated any different because of age. He was 55 or so when first diagnosed. He was healthy otherwise….no diabetes, etc. He did every treatment available for MDS and after exhausting those and living on just TX’s, he decided to go for a transplant. We interviewed 2 different centers and neither batted an eye about his age (64 years old then). That was almost 2 years ago and things could not be better.

If you are in good health besides the MDS, don’t let the doctors put you off because of age. I would look elsewhere if they did. After reading this forum and also, Marrow Forum, it seems that transplant is being done more and more. People that are newly diagnosed are being set up for transplant before doing other treatments. I think this is great because the treatments can mess up your cytogenetics which was beginning to happen with my husband. If a person can’t withstand transplant, treatment would be the only option, but remember, some of the treatments have been brutal for some people. My husband had a terrible experience with Dacogen – much, much, worse than his transplant experience which, thank you dear Lord, was a breeze. He was truly blessed.

I hope this post answers your "age" question.

Mary

[mac]

Thanks for your information. My hematologist has me on wait and watch right now, but also told me that he wanted to get me going in the direction of bone marrow transplant right away — I presume for the reasons you mentioned, especially because success is generally better in younger, healthier patients. I’m actually still questioning my Dx. I am very healthy — have always been. Shortness of breath upon exertion, because of anemia, is my only symptom. My cell counts are all low-ish, and slowly declining, but my differentials and blood chemistry are all normal, and my bone marrow biopsy showed no cytogenic abnormalities and no blasts. However I had only about 10% of the functioning marrow that I should, thus the hypoplasia Dx. My inflammatory and autoimmune markers, however, have been extremely high (sed rate, CRP, ANA, etc.) for some time now, so I’m wondering if I have an autoimmune thing going on that is attacking my marrow. (I have no other autoimmune disease symptoms, though) Is my condition definitively considered hypoplastic MDS? I don’t know what to think, so I guess I will go for a second opinion.

I’m wishing you and your husband the best. I’m new to all this, so it’s wonderful to get other folks’ input and hear their stories. Very inspiring, and complicated, too!

Thanks again.

mac

[maggiemag]

Hi Mac,
It seems your situation may be complicated. Are you sure your dx isn’t hypocellular MDS, rather than hypoplastic? I would urge you to go to an MDS center of excellence. I think there may be a list of those on this site, and I would imagine that Dana Farber is one. Good luck!
Margaret

[mac]

Thanks. My hematologist’s words were, "we think you have a form of MDS called hypoplastic myelodysplastic syndrome". He definitely said "hypoplastic", but it was the part "we think" that got me wondering whether this was a definitive Dx or not. Dana Farber is a center of excellence, so I will go there for a second opinion. I’ve already ordered copies of all my records. Thanks again!

mac

[McJan]

I have been following people’s accounts with MDS and their treatments since I was diagnosed May 11/11. I am a 50 year old female, and in excellent health otherwise. I am active including running and golfing and working full time. A few years ago my blood work showed a low platelet count. Then this year both my red and white blood counts were now below normal. I had a second BMB and was diagnosed in London, Ontario and immediately recommended for a BMT since I was young and healthy. Since then I have been to see Dr. Karen Yee at Princess Margaret. Her opinion is to continue to wait and watch and then turn to drugs and transfusions since the transplant itself has its risks. From reading the journey of others, it appears as though the use of drugs and transfusions may interfer with the success of a BMT. I would appreciate others opinions and experiences. I am on the registry since there is no match in my family.

[mac]

Your situation sounds somewhat like mine. I too would be interested in hearing from others about the relationship of transfusions and drugs on the future success of transplant.
Thanks!

mac

[mac]

Andy,

I’ve been following your blog and rooting for you! I received another recommendation from a forum user for Dr. Antin, so I think that I will see if I can get a referral to him.

Thanks again for your input. Wishing you all the best!

mac

[Rob]

My wife has been diagnosed with MDS. She has had the bone marrow biopsy. She is working with a local cancer docter. Getting bi-weekly shots of Aranist. She has had 2 blood transfusions this year. she is 74 years old. We don’t know where else to turn. Any suggestions as to where and what the best treatment centers are. Any info will be appreciated.

Rob

[Mary4Mike]

I am sorry to see that no one from your area has responded. I am not familiar with South Carolina and the cancer centers in that area. I am sure that you could look it up online, though.

It sounds as if your wife must be somewhat holding her own if she has had only 2 transfusions this year. The Aranesp must be helping her with her counts also.

Hopefully, someone else from your area will answer you.

[Author]

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