Dana Farber Boston

[Janice Sheppard]

Hi. I am a patient at Mass General but not Dana Farber specifically. I’m wondering if it makes sense to get a second opinion from a Dana Farber doctor. I have a hypoplastic MDS diagnosis which has been ongoing for 25 years. We’re now talking transplant (though not imminently), but I’m reading a lot of information regarding autoimmunity and alternative treatment to transplant. My doctor only supports treatment with transplant. Has anyone had experience with MGH vs Dana Farber?

[mdsfound]

Dear Janice, I know this is a difficult situation for you. Some MDS patients seek not only second opinions but third and even fourth opinions all from our MDS Centers of Excellence. This way you can weigh all of your options. Following is a link to our Centers of Excellence worldwide https://www.mds-foundation.org/mds-centeres-of-excellence/. I hope this information helps.

[Donna]

Hi Janice,
I started with a MGH doctor and just followed for a few years. When it was time for my first bone marrow biosy, I switched to Dana Farber to get another opinion. I decided to stay at Dana for no other reason than I built a rapport with my doctor and I feel comfortable there. Both are Centers of Excellence. We are so lucky to have the two in the same city. I think it is always good to get another opinion before heading into any treatment. In fact, my doctor at Dana Farber suggested I consult with a colleague who is perhaps more experienced in MDS to see if I would be a candidate for a clinical trial. He wanted another BMB and lots more blood. Bottom line is the same…MDS now with multilinear dysplasia, intermediate risk. I am going to continue with my regular doctor at Dana because I feel very comfortable with him and trust his judgment. So, my suggestion would be to go to another facility for another opinion. YOu can always go back to your original doctor. I don’t know if this helped at all. Do you live in MA?
Donna

[Janice Sheppard]

Hi Donna. Thanks for your reply. Yes I live north of Boston and see a doctor at MGH north. When I look at the centers of excellence on this website I don’t see MGH listed, but I guess that doesn’t mean they aren’t excellent. I’ve called Dana Farber and I’m waiting to hear from the new patient coordinator. My situation is on the ambiguous side. My bone marrow biopsy suggests a reactive process vs MDS. My doctor is siding with MDS. I’d like to explore reactive process.

[Donna]

Hi Janice,
I am also north of Boston and when I was with the MGH hematologist, it was at Emerson Hospital. Do know who you will be seeing at Dana? On this site, MGH is listed as a Center for Excellence. The first bone marrow biopsy I had said I was “evolving into MDS” but now I am there. Please keep us posted. I’ll be curious to see if you like Dana. Will you go into Boston? They do have satellite centers also.
Donna

[Janice Sheppard]

My doc is at MGH north in Danvers. I am waiting to hear back from the new patient coordinator – I had to call a second time. So far I am not impressed. The first time I called they took down all my info to give someone and then gave me the number to call in case i didnt hear back. Today I called that number because I hadn’t heard back. it was the Dana Farber pharmacy number.
And I was also not in the system for a call back. I was assured today that I am now. I still havent gotten a call from the coordinator.

I didnt know there are satellites. I’ll have to look into that. I’ll go wherever the right doctor is. Are they telling you bone marrow transplant donna? Have you been matched yet? I have been matched. I dont need one at this point, but they expect i will eventually. Km hoping theyre wrong.

[Donna]

Janice……….No they are not talking transplant to me. My doctor told me flat out that I am not a candidate for the regular transplant due to my age but that I might be a candidate for a mini transplant. It has not been mentioned again.
It’s a shame that you didn’t get a call back yet. I have found them to be very efficient from check in to check out. It has been a pleasure to deal with them, and I feel comfortable there. I don’t know if I will be able to stay there forever if I need treatment just because of the transportation issues. I drive in and my husband comes with me. If it gets to the point that I can’t drive in, I’ll have to rethink it. Some friends have said they would help out….we’ll see in time. I hope you get your appointment soon and have a good visit. Keep us updated. Donna

[Donna]

Janice……….No they are not talking transplant to me. My doctor told me flat out that I am not a candidate for the regular transplant due to my age but that I might be a candidate for a mini transplant. It has not been mentioned again.
It’s a shame that you didn’t get a call back yet. I have found them to be very efficient from check in to check out. It has been a pleasure to deal with them, and I feel comfortable there. I don’t know if I will be able to stay there forever if I need treatment just because of the transportation issues. I drive in and my husband comes with me. If it gets to the point that I can’t drive in, I’ll have to rethink it. Some friends have said they would help out….we’ll see in time. I hope you get your appointment soon and have a good visit. Keep us updated. Donna

[Janice Sheppard]

Someone finally called me back today and I see Dr. Steensma in a month. I live on the northshore so its convenient for me. Re transplant, I’ve known 2 people in the last year to die after a transplant, so honestly who would look forward to that. One of them for sure had GVHD, the other had return of disease. I have matches, but the prospect of GVHD doesn’t appeal to me at all. I’m 52 now. Who knows when I’ll need one. Maybe I’ll age out like you. Best case scenario I guess. No one so far can tell me why this is happening. I’ve had hypoplastic macrocytic anemia for at least 25 years, trisomy 8 for at least 10 years. Now I have severe neutropenia. But my BM results show that I dont meet the WHO diagnostic criteria for mds. Suggests reactive process of some kind. Makes me wonder, if they knew what that was and treated it, would that fix it. In a perfect world….

[Donna]

Hi Janice….I had my first bone marrow biopsy about 1.5 years ago and it slowed involving into MDS but did not meet the WHO diagnostic criteria for full MDS. My second BMB was just last month and that is what showed MDS-MLD and it figures out to be intermediate risk. Dr. Steensma is supposed to be excellent and very knowledgeable in MDS. I have read several articles written by him and seen webinars…..just google him and you will see a lot or the Dana Farber web site where he has a small clip you can watch. Good luck. It will be good if they give it a name that can be fixed. Keep us posted. I would love to hear how your appointment went. Did you by chance go to the MDS Forum last July in Boston. It was informative.
Donna

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