August 7, 2012

Essential Thrombocythemia Update - Hydroxyurea

It's been a long time since I updated my blog, life is very busy these days with our five kids.

I have been taking 2000mg a day of Hydroxyurea (HU), one pill of Aggrenox (aspirin & blood thinner), and one Iron pill every day for about the last year.  The best my numbers have ever been was about 500,000!

My last blood test showed my numbers were 850,000!  It's very upsetting to be taking HU, a drug with many side effects and not see real results.  The only good news is that the pins and needles, parathesis, has not returned with my high platelet count.  I only had one issue with the pins and needles and it was at a time when my stress was through the roof!!

I am currently trying to get an appointment with another hematologist/oncologist to get another opinion.  Surprisingly enough, HU, even with all its side effects seems to be the medicine that has the least side effects.  I am told that the Pegasus injections cause flu like symptoms, etc.  I am looking forward to meeting with the new doctor and getting his opinion.

My biggest concerns are that I could have a major stroke, my Essential Thrombocythemia could progress into Polycythemia Vera or Myelofibrosis or that I could develop a form of Leukemia.  

Most of the time I try to forget that I have a chronic illness, an illness that will NEVER go away.  I have many days that I feel fine, but every day I have to take six pills and they remind me of my illness.

It's hard to look fine on the outside but feel exhausted and sick on the inside.  It's a lot of work for your body to pump two times the normal amount blood through it, everyday.

Thank G-D, I have not had any hospitalizations since last August.  I will post again after my meeting with the new doctor.

I hope everyone is doing well.

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