Welcome to the MDS Patient Message Board Post New Thread

Welcome to the MDS Patient Message Board. We hope that you will find this to be a very valuable resource in your journey. We have recently revised the format of our forum to be much more user friendly and pleasing on the eyes. Let us know if you have any problems, or if you have additional suggestions on how we might further improve our site.

MDS Alternative treatments

Tagged: MDS Alternative treatment Hydroxyurea

This topic has 7 replies, 3 voices, and was last updated 5 years, 4 months ago by Laraine Beck.

Viewing 8 posts - 1 through 8 (of 8 total)

Author

Posts
October 4, 2018 at 9:53 pm #44144

Laraine Beck
Participant

I was diagnosed on 6/14 with MDS with MPN overlap. My most recent blood test indicated the MPN is under control and that the MDS is taking over. Has anyone had success with alternative treatments? I’m currently taking Hydroxyurea. The doctor advised me that in 3-5 years the medication will completely burn out all of my blood cells and insurance will not cover a BMT because of my age.

Interested in some sort of alternative treatment I can utilize along with conventional treatment.

October 5, 2018 at 3:00 pm #44147

mdsfound
Moderator

Dear Laraine, I know this is a difficult situation for you and I would recommend that you go to one of our Centers of Excellence in MDS for a second opinion. You should be very carefully assessed before undergoing any treatment. Benefits versus risk analysis should be done with any treatment. Following is a link to our Centers of Excellence worldwide https://www.mds-foundation.org/mds-centeres-of-excellence/. In the meantime, you can also view this video https://www.mds-foundation.org/you-and-mds/. I hope this information helps.

October 5, 2018 at 6:41 pm #44168

Laraine Beck
Participant

Thank you. None of the Centers of Excellence are covered under my insurance plan. I’ll call on Monday to see hwo much a consultation would cost. Unfortunately, there are no Centers of Excellence in Broward County which creates a separate problem. I wasn’t suggesting abandoning conventional treatment. Just looking for an alternative treatment to support the conventional.

October 5, 2018 at 8:37 pm #44169

Laraine Beck
Participant

MDS Moderator.. Do you know if all of the Sylvester Cancer Center locations (specifically checking on Deerfield Beach which is closer to me) are Centers of Excellence or is it only the one in Miami? I am checking on a new healthcare plan for 2019 that includes all of the Sylvester Cancer Centers. Appreciate any help you can lend me

October 11, 2018 at 11:26 am #44181

mdsfound
Moderator

Dear Laraine, Only Sylvester Cancer Center in Miami was given an MDS Center of Excellence designation. The Chairman of our Foundation, Dr. Stephen Nimer, is at the Miami center. A lot of MDS patients who are not near any of our MDS centers will go to one once a year. There they will find the best treatment plan and then they can have their local hematologist, who may be a mile down the road, carry out the treatment that the expert determines would be best. I hope this helps.

October 11, 2018 at 11:43 am #44182

Laraine Beck
Participant

Thank you. This is very helpful. There is a Sylvester Cancer Center in Deerfield Beach (Incidentally on the Aetna Medicare website ALL of the Sylvester Cancer Centers are listed as Centers of Excellence) and I am sure their oncologist will work with Dr. Nimer.

October 11, 2018 at 6:25 pm #44186

Michael
Participant

The mods response above is what I do. I am 2.5 hrs from the closest Ctr. of Excellence. I travel there every 6 mos and in the interim see my local hematologist.

December 3, 2018 at 9:31 am #44613

Laraine Beck
Participant

FYI Dr. Nimer is not accepting new patients at this time. Disappointing
Author

Posts