2 Years Today

[LynnI]

It was July 17, 2008 when I got my last transfusion!!

The Valproic Acid continues to keep my hemoglobin well within the normal range of 130's. Last year we had one episode of my hem's crashing, started the VPA again and up they came. I only take one 250 mg pill a day, anymore than that and my counts go too high. If I stop the VPA, once the drugs wear out, my counts crash. My Spleen has been behaving as well.

My doc for the MDS says it is amazing and a miracle, he doesn't know why I am so lucky.

I was thinking about everyone today with this damned disease, knowing how lucky I am, as I galloped along a trail on my horse for an early morning ride. I remembered the extreme fatigue and the effort it took to just climb a few stairs.

With some luck, maybe just maybe the VPA will keep the MDS/Fibrosis in a chronic stage for a very long time.

My thoughts are with everyone, please take care.

Lynn

[S001]

Originally Posted by LynnI

It was July 17, 2008 when I got my last transfusion!!

The Valproic Acid continues to keep my hemoglobin well within the normal range of 130's. Last year we had one episode of my hem's crashing, started the VPA again and up they came. I only take one 250 mg pill a day, anymore than that and my counts go too high. If I stop the VPA, once the drugs wear out, my counts crash. My Spleen has been behaving as well.

My doc for the MDS says it is amazing and a miracle, he doesn't know why I am so lucky.

I was thinking about everyone today with this damned disease, knowing how lucky I am, as I galloped along a trail on my horse for an early morning ride. I remembered the extreme fatigue and the effort it took to just climb a few stairs.

With some luck, maybe just maybe the VPA will keep the MDS/Fibrosis in a chronic stage for a very long time.

My thoughts are with everyone, please take care.

Lynn

It's great you'r doing so well! Hope your counts go from better to best!

[Birgitta-A]

Congratulations Lynn ! Your good response gives hope to us - perhaps we will find a drug that will help us too.

I am now taking Thalidomide 50 mg/day and Prednisone 20 mg/day for my severe fibrosis. My RBCs and platelets are increasing but the WBCs have been decreasing so I take 3 Neupogen injections/week instead of 2.
Kind regards
Birgitta-A
71 yo, dx MDS Interm-1 May 2006, transfusion dependent, Desferal and Exjade for iron overload, Neupogen 3 injections/week for low WBCs, Thalidomide 50 mg/day and Prednisone 20 mg/day for fibrosis

[Zoe's Life]

Lynn, how wonderful! I remember when you started the Valporic Acid. I am glad you are continuing with such great results!

Zoe

[LynnI]

Birgitta,

It does give us hope that a drug/s can be found to at least put bone marrow diseases into a chronic stage. A drug that doesn't have bad side effects and gives people a wonderful long quality of life. If this drug can do this for me, there is no reason to think that another drug can't be found to do the same for so many others. I only wish they were able to find out why it works so well for me, which hasn't happened yet.

Cheers,
Lynn

Originally Posted by Birgitta-A

Congratulations Lynn ! Your good response gives hope to us - perhaps we will find a drug that will help us too.

I am now taking Thalidomide 50 mg/day and Prednisone 20 mg/day for my severe fibrosis. My RBCs and platelets are increasing but the WBCs have been decreasing so I take 3 Neupogen injections/week instead of 2.
Kind regards
Birgitta-A
71 yo, dx MDS Interm-1 May 2006, transfusion dependent, Desferal and Exjade for iron overload, Neupogen 3 injections/week for low WBCs, Thalidomide 50 mg/day and Prednisone 20 mg/day for fibrosis

[Rosemary]

Congratulations Lynn!
Glad you are doing so well. I am on Revlimid for 5q- MDs and my oncologist is happy that my hemoglobin is 112. I keep hoping it will go up, but I have all my old energy back, which is good enough for me when I think of last year when I could hardly climb the stairs. Haven't needed a transfusion since October of last year.
It's encouraging to know that people are managing to keep normal lives with this disease which seems to be different for every person who has it. And everyone seems to be taking something different. It's very confusing for a newcomer. There is an education day in Ottawa, Ontario, in October, run by AAMAC, and I hope to get to that to find out a bit more about the disease and meet people with the same type I have.
Good luck in the future Lynn.

[LynnI]

Hi Rosemary,
I hadn't seen that in Ottawa, however I just received a letter from AAMAC and I haven't opened it yet.
There is a monthly support group meeting in Toronto each month, although I expect you are aware of them. I haven't been to one for a while, been too busy but hope to again soon.
Hopefully I can go Ottawa in Oct as well.

Thanks and take care,
Lynn