3 Years and going strong!

[LynnI]

Hi,
It was 3 yrs ago today that I got my last blood transfusion, my counts are all in normal range now and other than a bit of fatigue I am great. All because of one little pill that I take 2x week with no side effects except for some weight gain that wont go away. Hardly something to complain about.
How did I spend my day? In 92 degree heat and high humidity, I ran 2 very fast Jrts in Agility in 7 runs, which resulted in several clean runs and we won too. In short I ran my butt off, had a great time (except for the heat) and counted my blessings that I have been so fortunate.

Keep the hope folks.

Lynn

[lindy]

Congrats Lynn, great to hear you are doing well.

Just wondering what's this pill that is helping you?
Could other MDS patients benefit from it?

[mausmish]

That's wonderful news. Congratulations, and thank you so much for sharing it with us. It gives us all hope for a brighter future.

[squirrellypoo]

Congratulations, Lynn! Thanks for letting us all celebrate with you.

[LynnI]

Originally Posted by lindy

Congrats Lynn, great to hear you are doing well.

Just wondering what's this pill that is helping you?
Could other MDS patients benefit from it?

Hi Lindy,

I take Valproic Acid, it is a common treatment for low rbc's/hgl. It is my understanding that about 1/3 of patients that try it, respond to it but the median time line is about 5 months for a response. It typically just brings up your hemoglobins high enough to not need transfusions during the time a patient responds.
I have been very fortunate in my response, a) it has lifted my counts into the normal range, b) it has lasted for so long and c) I require a very low dose to maintain the results.

It is also my understanding that VPA combined with Vidaza is showing some good promise as a treatment.

Take care,
Lynn

[Greg H]

Hey Lynn!

Congratulations on your great response -- and for posting here to remind us about valproic acid.

When I read Lynn's post last night, I used the marrowforums feature that allows you to search for all posts by a particular person to figure out we were talking about valproic acid -- that made me recall earlier posts and some reading I had done on it.

I went Googling and found a couple of interesting articles, but then I thought: "Why not search marrowforums?" Once I realized it was an HDAC inhibitor, I thought I remembered a post from Birgitta on that topic.

Well, lo and behold, there wasn't just one post; there were dozens -- from Birgitta and plenty of other folks too. That search saved me tons of time tracking down stuff. The search function is an incredibly valuable aspect of marrowforums. I've been hanging around here more than a year and it's the first time I had really made use of it. Highly recommended.

The search reinforced a lesson that I think many of us have learned: the current treatments for MDS are kind of like mending china with a sledgehammer -- or maybe hunting mosquitoes with a shotgun.

The trials of valproic acid cast such a wide net that they record a response, but offer little enlightenment on which patients will be helped by this particular therapy, as opposed to one of the others. As Neil remarked the other day, MDS research is still in its infancy in terms of teasing out the various types and the therapies appropriate for each.

Until the research gets some of that nailed down, most of us are left with a handful of possible therapies and little choice other than to pick one and see if it pans out. All the more reason for folks to sign up for clinical trials.

Take care all -- and thanks much, Lynn! Congrats!

Greg

[Lbrown]

That's great to hear Lynn! Are you riding too?

Deb

[Birgitta-A]

Hi Lynn,
Your response during so long time is really wonderful ! I hope your doctor will write an article about you. I have seen articles about single patients who have responded on Revlimid or other drugs during several years but never anything like that about Valproic Acid.
Kind regards
Birgitta-A

[celebrations]

Hi Lynn,
maybe you remember me, we have contacted three or four times in the mds-foundation.org's forum about two years ago.
Didn't you work with dogs...?

It is absolutely wonderful, that your response to VPA is so long-lasting!!!

To confirm Lynn's experience with VPA:
My doctor had told me with a trisomy 8 I probably could be lucky and I was.
In 2008/09 I took Valproic acid (it is a traditional drug against epileptical attacks) and I responded to it for almost 10 months. I was transfusion-free, what a gorgeous experience. The drug kept my HGB between 9 and 10.
But then it slowly stopped working and my HGB went back to 8.
My physician tried to increase the dosage, but unfortunately the response was over...

Like you, Lynn, I gained some weight (14 lbs !!!) during that time. Once I stopped to take the drug, it fell off me within a couple of weeks.
In the beginning of the therapy I used to be very tired, but this side-effect disappeared after two weeks.
What dosage do you take, Lynn?

So, for some MDS-patients VPA seems to be a "harmless option" for some time.

Greetings, Bergit

[LynnI]

Originally Posted by Lbrown

That's great to hear Lynn! Are you riding too?

Deb

Thanks! Yes, I am riding but I am so busy with my business that I only get out riding 2-3 times a week at this time.

Hope your doing well.

Lynn

[LynnI]

Originally Posted by celebrations

Hi Lynn,
maybe you remember me, we have contacted three or four times in the mds-foundation.org's forum about two years ago.
Didn't you work with dogs...?

It is absolutely wonderful, that your response to VPA is so long-lasting!!!

To confirm Lynn's experience with VPA:
My doctor had told me with a trisomy 8 I probably could be lucky and I was.
In 2008/09 I took Valproic acid (it is a traditional drug against epileptical attacks) and I responded to it for almost 10 months. I was transfusion-free, what a gorgeous experience. The drug kept my HGB between 9 and 10.
But then it slowly stopped working and my HGB went back to 8.
My physician tried to increase the dosage, but unfortunately the response was over...

Like you, Lynn, I gained some weight (14 lbs !!!) during that time. Once I stopped to take the drug, it fell off me within a couple of weeks.
In the beginning of the therapy I used to be very tired, but this side-effect disappeared after two weeks.
What dosage do you take, Lynn?

So, for some MDS-patients VPA seems to be a "harmless option" for some time.

Greetings, Bergit

Hi Bergit,

I only take 250 mg twice a week, if I take more than that my hemoglobins skyrocket into the 150 -160's. Yes, I still train and compete with dogs

Cheers,
Lynn

[Greg H]

Originally Posted by celebrations

What dosage do you take, Lynn? So, for some MDS-patients VPA seems to be a "harmless option" for some time.

Hey Bergit!

I didn't realize you had taken valproic acid, too.

What was your dosage, if you don't mind me asking?

Take care!

Greg

[celebrations]

Hi Greg,
I just looked it up.
Incredible in comparison to Lynn.
I took 1050mg/d. Wow.
Bye
Bergit

[LynnI]

Originally Posted by celebrations

Hi Greg,
I just looked it up.
Incredible in comparison to Lynn.
I took 1050mg/d. Wow.
Bye
Bergit

Hi,
It is my understanding that it isn't uncommon for ppl to take 1000 - 2000 mg/d for a response, usually lasting 2-9 months and only raising the hgl high enough to not require tx.

To say I am lucky in my response is probably an under statement, because I remember how bad it can get. I went from not being able to climb 3 steps with extreme effort or help to being as normal as I could get.

I wish that they could find out why it works so well for me and give them clues on how to help others.

Cheers,
Lynn

[Greg H]

Hi Bergit & Lynn!

In the looking around I have done on Valproic Acid, I typically found higher doses being used, as Lynn indicates.

Lynn, apologies if you have already answered this, but why did you wind up on the low dose. Did your doc start you out higher and then bring it down because of side effects, or did you just start on the low dose. I'm curious why he or she chose the lower dose, when the research is all with higher doses.

Thanks much and take care!

Greg

[LynnI]

Hi Greg,
I started on 250 mg, 2x/d, I also had to go for weekly CBC's. He insisted that the CBC's be taken on the same day and close to the same time period each week. His biggest concern was the effects of the VPA on the liver, if I remember correctly. I am assuming he was cautious because of that, however at the time I didn't know that was a low dose. I have met a couple of his other patients that are on the VPA and they all had much higher doses. I don't know if they started low and increased or whether he started them higher.

In my case, when I started the VPA my hemoglobins were down to 70. I started the VPA on July 11th, and had my next tx on July 17th. Prior to the tx, I didn't feel any better after starting the VPA, however about 24 -36 hrs after the tx and being on the VPA for just a week I felt amazing. I hadn't been able to eat for months, forcing myself to eat a cup of food was very difficult. After the tx, I was immediately straving and able to eat very large amounts of food. I had never felt that good after getting a tx before that, yes it made me feel a bit better, yes my counts came up but never above 100.
I very guickly started to go 'pink' again, my palms, eye lids etc had colour and of course increased as the counts climbed.

Six months after starting the VPA, we had to lower the dose bc my counts were climbing too high. Dr. Wells was shaking his head about this one. We soon discontinued the VPA to low the counts. That lastest for 6 months, then my hgl crashed and quickly, I went from a hgl of 135 to 102 in less than a month. I started the VPA again and it started doing it's job, counts climbed immediately. Since then we have played around with the dosage to keep me in the 130's, so 250 mg twice a week is what works at this time.

My spleen as also been behaving it's self for the last year, it use to give me a lot of grief with a burning and/or sharp pain.

Cheers

Originally Posted by Greg H

Hi Bergit & Lynn!

In the looking around I have done on Valproic Acid, I typically found higher doses being used, as Lynn indicates.

Lynn, apologies if you have already answered this, but why did you wind up on the low dose. Did your doc start you out higher and then bring it down because of side effects, or did you just start on the low dose. I'm curious why he or she chose the lower dose, when the research is all with higher doses.

Thanks much and take care!

Greg

[agonzalez]

Hi! Lynn

That is awesome news!! Congrats! It gives everyone else hope... Thank you for sharing your news with us. God Bless!



Amy