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.

Went to Moffitt new course of action BMT consult

This topic has 5 replies, 1 voice, and was last updated 11 years, 4 months ago by Pamzzz.

Viewing 6 posts - 1 through 6 (of 6 total)

Author

Posts
March 7, 2012 at 12:54 pm #23508

Anneg
Member

Hey Everyone:

Well went to Moffitt last week. Seeing Dr.Lancet. Found out I have RAEB II with 15% blast. Vidaza has brought blast to 6%. Dr. Lancet has decided to add Revlimd to my treatment. 5dys Vidaza, 21dys Revlimd. It’s a new clinical trail. I have a cromizone {can’t spell} that revlimd has worked on. Have an a appt. next wednesday with the transplant clinic. Keep our finger crossed my brother matches. Doing transfusions at least one a month along with platletts. I guess we are on our way. Hope everyone is doing well.

God Bless
Anneg

March 7, 2012 at 8:08 pm #23509

Mary4Mike
Participant

Anne,
I am glad for you that you found help and they have set up a plan of action. It sounds like you are in good hands. Are you feeling pretty good despite being in treatment? Is your port healing?
I will pray that your brother is a match for you. Is he your only sibling? My husband’s one and only sibling was/is a perfect match for him. We can find blessings through every life event, can’t we? You can always see someone in the clinics that are worse off than yourself. I always pray for them and give thanks.
Take Care~~~~~
Mary

March 8, 2012 at 5:13 pm #23510

Anneg
Member

Thanks Mary and yes my port healed very nicely. I love it. Again thanks and have a great day.

God Bless
Anneg

March 11, 2012 at 8:34 pm #23511

lindajo
Member

Hey Anne, It will probably help you to get copies of all of your tests. As you learn more about the disease it will help you to understand where you are in relationship to recommended protocols. Which Chromosone problem do you have? How is your treatment going with Revlimid? I am thinking of you. Linda

March 16, 2012 at 8:10 pm #23515

Anneg
Member

Hey Linda:

Yes, I do stay very active in my treatment. I get as much info as possible write it down, ask doctor, write it down. Always get my blood counts. Still need to find out what chromozone is the bad bad one. Its the one that they have had great success with Revlimd, we’ll see. Just got back from Tampa. had my consultation with the BMT (Bone Marrow Transplant) Clinic. They drew my blood to type. Once they get the Authorization, they will send the blood kit to my brother and set me up for the pre-testing they need to do. We will know if Revlimd, is working, on April 17th, I have appt with Dr. Lancet to have a BMB. So——here we go.

God Bless
Anneg

December 1, 2012 at 1:59 am #23696

Pamzzz
Participant

My husband has the 5q, 17p & 53 chromosome problem. We were told that the 17p is the really nasty one to have & that only approx 2% of the MDS patients have it. Totally sucks!
Author

Posts