← Return to Myelodysplastic Syndrome (MDS)

Discussion

Myelodysplastic Syndrome (MDS)

Blood Cancers & Disorders | Last Active: Mar 31 3:15pm | Replies (51)
Comment receiving replies
@stevepark1955

Thank you again for all your words of wisdom. You seem to be a voice of reason, something I know I am grateful for. Although we have been through cancer before, this is much different.
Our original oncologist is in Palm Beach County Florida where we previously resided. Mayo was a second opinion for us. We are 2 1/2 hours south of Jacksonville in Brevard County. Our PB County oncologists sends his patients that need SCT to either Dana Farber (that is where he was for years), Sloan Kettering in NY, or a place in Texas (not MD Anderson). And although i think those are all excellent choices, we are at this moment leaning towards Mayo should the day come since our children are also local and I feel it's important to be close by with family when and if that time comes.
I can't thank you enough for the open invitation to ask anything that might help us navigate.
Is there anything right off the bat from your experience and knowledge that you think we should be doing at this time or asking?

Jump to this post

Replies to "Thank you again for all your words of wisdom. You seem to be a voice of..."
Lori, Volunteer Mentor | @loribmt | Mar 29 2:47pm

I’m very happy to be able to be your voice of reason if needed. None of us ever know how we’ll react to a life altering diagnosis until we’re faced with it. I’ve had a great deal of experience the past 5 years with very aggressive acute myeloid leukemia and the subsequent need for a bone marrow transplant. I didn’t have a mentor or anyone who I knew who had gone through this. My teams were wonderfully helpful; they could talk the talk but they hadn’t walked the walk. It really helps if someone who has gone through a similar experience does a little hand holding or shines a light to guide the way through this intimidating medical journey. I feel it’s my privilege to be able to offer hope and help out where I can. Not much ruffles my feathers and I will be here to help you and your husband whenever I can. ☺️

Your idea of being close to family, should your husband need a transplant, feels like a sound plan. While the other clinics are all good choices, Mayo is a top tier transplant clinic and having family nearby would really benefit both you and your husband.
Right now I can’t think of anything that you should be asking. It sounds like your husband’s doctor is keeping an eye on his condition and it’s stable at this point.

When you talk to the transplant team, you ask how the transplant is handled…whether it’s as an outpatient; where your husband is off campus but nearby for 100 days. Or, if he will be in clinic for a few weeks and then require lodging. Each clinic will have their own protocol.

My experience at Mayo Rochester was as an outpatient, which I loved!! I felt that I recovered faster than if I had to stay in a hospital setting. My husband and I did relocate to Rochester for 4 months which worked out really well for both of us.

But your husband isn’t there yet…so this may be years down the road. It’s great to get ‘ducks in row’ with all the information but don’t forget to just live in the moment and enjoy life right now!
Another suggestion is to not do a lot of research into the transplant process online. It can take you down paths on the internet with stories or situations that won’t apply to your husband and just create unnecessary anxiety. This is all doable, not a walk on the beach but it is a second chance at life and well worth the effort. ☺️

VIEW AND REPLY