Results from bmb all good nothing different from original blood work. Platelets currently 650 need to restart HU, sadly organist didn't work for me,I have been off it for 3 weeks and feel much better. Heamatolgist can only prescribe interferon HU Anagrelide not suitable for me.
Referral for Professor Harrison done,fingers crossed that won't take too long. H
Glad to hear that you have the results of the BMB in. It is unfortunate that PEG did not work for you. Hopefully you will have a better experience with HU. Since you are starting at a relatively low level of thrombocytosis, you will likely only need a low dose of HU to reach your treatment target.
Regarding your target, have you decided what it should be? Some docs now use 600 as the target when a fixed number is used. silvermpncenter.weill.corne...
Other docs are looking more at the delta (degree of change) as the target. It seems that there is no absolute number that needs to be used. There is no evidence that there is a linear relationship between platelet levels above norm and risk of thrombosis.
I think we always need to balance the risk/benefit of each of our treatment options. Treatment goals need to include reducing risks and managing the actual symptoms (constitutional/secondary) we experience. I always opt to use the lowest dose / lowest risk option to achieve my treatment goals.
Glad to hear you have been referred to see Dr. Harrison. Her approach to managing MPN care is outstanding. You will be certainly receiving top-of-the-line care there.
All the best.
Heamo aiming for 400, hopefully professor Harrison will agree to higher number and maybe bomedemstat.
The data on bomedemstat looks pretty promising. I hope you can get into the clinical trial. Meanwhile, I would suggest that it is up to you to decide what your treatment goals should be. Also note that some treatment protocols have shifted the definition of high-rik ET to age 65 instead of 60.
I am sure that Dr. harrison will go over all of this with you - treatment goals, treatment option, managing actual symptoms. Until then, all the best as you move forward on your care plan.
Thank you
Symptoms - Newbie - Awaiting results re: BMB- ET
BMB
To BMB or not to BMB, that is the question...
Mpl mutation 
