Little update

[LynnI]

Hi everyone,

I hope everyone is hanging in there and doing well.

I have now been tx independant for almost 8 months, my WBC and PLTs remain normal. But my hemoglobins have been a bit too high, which is certainly a switch from this time last year of being critically low. They have been in the 150's to low 160's, which is causing me to have heart palpations and fatigue, dizzy spells and I have fainted once.
Although I was only on 500 mg of Valproic Acid, the dosage was reduced in the end of Jan by half in hopes that my hemoglobin levels would drop. That was not successful, so as of a couple of weeks ago, I have stopped taking the VPA completely.

We are trying to find out if it was the VPA keeping my counts so high or whether the MPD (Myeloprolifterative Disorder) is now acting up.
My spleen is acting up as well, its not a happy camper, but that is understandable if my blood is now too thick and it is having to work harder.

I am having monthly appointments with my MDS doc along with returning to weekly CBC's.

At this point, if it is PV caused by the MPD, I don't know what the treatment is etc. I keep waiting for those dreaded words of them wanting to do another BMB again, but we do what we have to do, as you all know.
At my last appointment, my MDS doc said that my bone marrow was unusual and I forgot to ask him to expand on that statement.
It certainly is true, that we are all different with this damned disease, no wonder they are having such trouble finding a cure for us.
It also seems so silly to be talking about my too high hem's when so many of you are still critical with too low hem's as I was less than a year ago........

At any rate, please take care.

Lynn

[Birgitta-A]

Hi Lynn,
I have read about patients with the MPD disease myelofibrosis that developed PV after different treatments but never about MDS patients before I read your post.

The most common drugs for PV are Hydrea (that can give AML) and Pegasys. Both are probably much too strong for you. Many PV patients are only treated with phlebothomies or baby aspirin to prevent clotting - perhaps you could wait with treatment more than a couple of weeks and hope that the Hb will decrease.
Kind regards
Birgitta-A
Dx with MDS May 2006 and myelofibrosis June 2006 - Sept 2007. Still a member of one support group for MPD and two for myelofibrosis - I read the posts 7 days a week.

[LynnI]

Hi Birgitta

Agreed, at this point it is watch and see what happens over a longer period of time to see if the hem's drop or not.

I was originally dx with MDS/MDP Unclassifiable last April, but my dr. felt the MDS was more of a concern at that time, which was true.

Thanks and take care,

Lynn