Blood results changing

[Luger1067]

Hi I’m new here, was diagnosed with p/m 15 years ago and been taking hydroxyurea. Recently blood results changing I’m worried it’s changing to m.f

[Mazcd Partner MPNVoice]

hello Luger1067, welcome to our forum. Completely understand you that you are worried that your p/m may be changing to MF, this is something you need to discuss with your haematologist so that she/he can explain what the change in blood results means for you. Best wishes, Maz

[hunter5582]

There are too many variable to give a clear answer to your question. Saw your other post about WBCs. That is a good case-in-point. Elevations is WBCs can occur for a number of reasons, including infection and stress. It can also be a change in your MPn status or a change in how your body is reacting to the HU.

There is more to understanding what is going on than just looking at the numbers on a CBC. As Mazcd suggests, it is time to review your status with your MPN Specialist.

Hope you get answers soon.

[Leighcox85]

Sometimes when you take a medication for years it becomes less effective and a change is needed or just adjusted dose but when you are worried it’s always best ask your doctor he knows you best and will be able give you the answers try not to worry as stress is a big factor I have mf so I understand your worries I recently had something similar and i had to add a medication good luck hope you get answers soon x

[Ladygolf]

Hi Luger1067, I had the same thing happen to me after 12 years on HU. My doctor was concerned and did another BMB to see what was going on. It confirmed I was still true ET. After so long on HU my body had built up a tolerance to it. I went on Anagrelide for 2 years and my numbers were the best ever. Unfortunately I had poor QOL on it so he then switched back to HU. It started working again but not as effective as the first time around. Hopefully your issue is the same and you can just switch to another drug. I am in Canada and retired so no other options that the government health plan will pay for but depending where you are you should have lots of alternatives. I think the first step will be a BMB to check for progression. Talk to your doctor.

Wishing you all the best!

[Luger1067]

Thankyou

[LongETinUS]

I had a similar experience living with ET. For the first 8 years I was taking HU my platelet count was stable at about 900,000. Then the counts went up. My doctor said it was often necessary to adjust the dose over time and not to worry about it. I read the primary medical literature and wasn’t so sure. I expressed my doubt so he ordered a new BMB and a range of genetic testing. These confirmed no disease progression. The platelet counts and the dose of HU needed to manage them went up for the next 18 months to the point where there was no way for the doctor to ignore that the HU was no longer as effective. Currently, I am transitioning to Pegasys, which was initially mismanaged by stopping the HU before the Pegasys had shown it was working.

Your doctor should do the necessary tests to determine if there is or is not disease progression. If you do need to change medications then I recommend to use this forum to gather information about the experiences of patients transitioning so you can avoid/minimize difficulties.

[Luger1067]

Thankyou so much for your reply