2 replies to this topic

[Melanie]

Just wondering how many are living with low platelets and how low and for how long?

I've been in a clinical trial for a couple years, taking a drug, Promacta, to keep my platelets up around 80 or so. Sometimes they even get over 100. The side effects are really starting to effect me so have been considering stopping the trial. How low can your platelets be and not be too dangerous? Every time I have to take a drug break from the Promacta, my platelets drop to around 40-50, before I start again. Not sure how low they would actually go. The protacol doesn't allow me to experiment. I'm either in the trial or out. Anyone's experience would be greatly appreciated.

[xxgirl]

Hi Melanie,

 

My platelets have been at or around 30 - with only a couple of tests in the 50 range - since May.  Lately they have been hovering in the 25 range, and my dr. seems to be okay with it until I drop below 20.  I don't seem to have any noticeable issues besides bruising easily.

 

I don't know if you're still having issues with other low blood counts?  My hemoglobin seems to be still trending down weekly, but my platelets seem to stay relatively stable at their current sucky level.  

 

That said, of course, every one is different and I believe that Trey has said that platelets are usually the last count to normalize.

 

Best of luck, whatever you decide!

[Melanie]

Thanks xxgirl! That's what I wanted to hear. When I started the trial, I was in pretty bad shape and was desperate to get any of my numbers stabalized. The objective was to be able to stay on a TKI long enough to allow it to do its magic. With my cytopenia, I wasn't ever on. TKI very long before having to take a break. The thought was to control the neutropenia with shots, the HBG with transfusions, and the platelets with this trial and it worked!

As an extra bonus this trial also help in stabilizing the neutropenia and low HBG, so it's very rare that I have to supplement them and I have been able to stay on my TKI for over two years with minimal breaks. I think my numbers are trying to normalize and I want to see what they do on their own. Unfortunately, my Onc doesn't necessarily agree.

How low is your HBG getting and better question is how do you feel? Hopefully in time your numbers will be more normal. Wishing you the best!

Melanie