Hemoglobins crashing

[LynnI]

Hello everyone, it has been sometime since I have posted but I have been reading and checking out the forums on a regular basis.

I have not received any tx since July 17 2008 and after starting the Valproic Acid treatments. It has been a good time, my counts were normal and I was able to lead a normal life, it was almost like I had never had the MDS in the first place. My hemoglobin by Jan 09 was climbing too high, so we stopped the VPA. While on the VPA I went weekly for CBC's. They continued to watch my counts each week after stopping treatment, it took a while but within a couple of months my HGL were stable in the 130's, never going below 133. My whites and platelets have continued to be normal.

It was decided that I didn't need to have weekly CBC's and I started going once a month with no changes. Aug 5 my hemoglobin was 135 but then I started to feel a bit poor, but I figured it was my seasonal allergies that were making me tired.
On Sept 9th I went for my CBC's and the nurse noticed that I wasn't as pink as I have been and I told her that I knew that and I was fearful of the results would be.
Plus I had experienced those fevers and chills for the last two weeks ...........

My HGL have crashed, 102 was shocking after so long of being good and the MDS under control. What concerned me the most was how fast they dropped.
I am so thankful that I have Dr. Wells from Sunnybrook as my doctor. Within 2 hrs of him receiving my results, his office called me with an appointment for Friday. I was really hoping that it was a lab error, but the CBCs taken on Friday showed the same counts. He is quite concerned about how fast the decline is and how far in such a short period of time and I have appointment next week for another BMB. I have also started taking the VPA again in hopes that I will respond to it and at the very least at this point it will slow down the crash or stop it.

After we get the results of the BMB, we'll figure out what the best game plan is.
One interesting fact is when my hemoglobins are low, my Platelets go high, and the whites are normal.

Take care,
Lynn

[Birgitta-A]

Hi Lynn,
Very nice to hear from you and the wonderful results with Valproic acid!

Perhaps you have got some kind of infection - you write that you have experienced "fevers and chills". Counts can decrease when we have infections. Do they try to find out why you have fever?
Kind regards
Birgitta-A

[LynnI]

Hi,

Yes that was considered and discussed. But in the past when I got the fevers and chills it appeared to be caused by the MDS and no other source. I have not had the flu but my allergies are at their peak at this time. But having said that, last year when the MDS was under control, when my allergies were bad it didn't effect my counts.
I have had the flu this past year along with an infection in my mouth from the Lichen Plantus, neither made my counts drop.

It would be nice if it was an infection and not the MDS coming back full force or worse.

Thanks,
Lynn

[LynnI]

Hi,
I started the VPA again on Aug 11th, by the next week my HGL had improved.
They did another BMB, good news is there is no progression of the MDS. And I am responding extremely well to the VPA again, as of today my counts are up to 114. I am expecting that within a week or two my counts to be normal.

It appears that I am very lucky as I am responding so well to such a simple treatment at this stage to this damned disease. I wish that were so for everyone else that is fighting it.

I have agreed to another BMB when my counts are normal, so the researchers can try and find out why this is working so well. My doc says that of all his patients, I have come close to a cure/remission/? without a transplant, especially considering that I wasn't in a chronic stage but receiving transfusions on a regular basis. Hopefully they can figure out why or at least get another piece of the puzzle.

Take care,
Lynn

[Birgitta-A]

Hi Lynn,
How wonderful that your counts have increases again! The problem with MDS is that it isn't one disease but many diseases with some symptoms that we all share. This means that we will respond different to treatment.

You have responded to one of the "latest" drugs - the histone deacetylase inhibitors (HDAC inhibitors) and there are several other drugs of that type in clinical trials for MDS.

It is really very important to try to find which patient that will respond to a special drug and we hope they will find something in your and others responders bone marrow cells that will tell us that patients with this feature will respond to Epival.
Kind regards
Birgitta-A