Just Diagnosed With Mds

[RDD]

Hello All,

I am from Canada, and I was diagnosed with MDS at the middle of July.
My #'s as of today are: HB> 12.2, PCV 0.362, Plateletes 45 White count 3.5
Cytogenetics deletion 20q. RCMD with del(20q)
I am 50 years old. The doctor mentioned too old to have a transplant. I am not taking any medicines at this point. Only on observation, every two weeks I go to Princess Margaret for tests.
Is there someone with the same diagnosis???
How are you adjusting your life? Any advice on what to do/not do?
I read some of the articles about travelling, My husband and I are going on holidays, and now I am a little bit scare.
Do you know of any support group in Canada? Sometimes I feel very down, and I know I have to have a possitive attitude.... Any comments are welcome.

[Debster01]

Hi! My father had MDS for many years. I am surprised your dr said too old for transplant-here in the US the age limits are much higher-I have heard those in their 60's have gotten them here. Anyway-since you are being monitored frequently-I would say go ahead and go on holidays, especially if you are feeling good. Also-there are drug treatments to try if/when you get to that point. Your hemoglobin is really good-are your platelets stable? Best wishes to you, and please keep us posted on your progressDebbie

[lost]

hi ...my husband was dig, in Dec...with MDS...he has 2 brother,s that are a match...he,s 58..years old...they are waiting I don,t no why..but I think they are going towards a transplant...he,s being treated in ottawa ...I hope they fix him soon...Scared of the waiting...

[kertkkey2007]

Kert has had MDS for 3 yr's. He did a trial drug TLK199, but it didn't work. he took shots of procrite, neulasta and nupergenia for over a year and they stopped working. Went on the new drug Dacogen just approved last fall and we call it our miracle drug. He has had 3 series and he goes 3 and 4 months in between without anything. this is his count's before he started his 2nd week. WBC-1.1 Neu--0.130 RBC-4.23 HGB-12.3 and platelets 30. After his 2nd week they start going back up to normal by the 3rd. week. He just has problems with his WBC. & Platelets.
Once your husband has all of his test done, and they get him on the right drugs, he will probably be able to do what he wants to.
Good Luck and you have found the right place...Marrowforms

[RDD]

Hi Debster 1, Thks for the reply.... platelletes fluctuate from week to week the lowest they've been is 39, now they have climbed up to 45. Hemoglobine has gone down from 13.6 to 12.2. white count is the only one that is still constant.

Roxana

[MJW]

Hi, This is my first entry but I felt I had to reply. I am a 49 year old female and have been diagnosed since 1998. I am currently on Revlimid & Aranesp but I was on 'watch & see' status from 1998 to 2005. I have undergone the blood transfusions for a year, been on Procrit and Thalidomide. I am being seen at the City of Hope in California and will eventually have a donor-related BMT. Don't let anyone tell you that you are too old to have a BMT, especially at our age! I talked to one man at the City of Hope who successfully went through a BMT in his 70s.

[lost]

That is so great to hear...when we found out about my husbands MDS..the doc, said there,s nothing we can do , there,s no cure. go home and take care of your husband,..we cryed and when I went back I was crying telling the doctor to look in my eyes ...I said my husband is only 57 years he has never smoked always in shape..we just had 2 grandkids..I want you to treat him like it was your wife ..brother or father ...I,ll never forget that day...after that they tested his 4 brother,s and Thank god 2 of them match....we are still waiting, the doctor says it,s a big risk a BMT that it ,s better to wait till the right moment...so I think when they say over 50 is to old it,s not true..
I,m sure a bmt is a big risk at any age ...but when you have no choise you take anything to live...god bless