Essential Thrombocytosis

I am a 24 year old female.  I was diagnosed with ET when I was 17.  I have been taking Agrilin (sp) ever since.  2 years ago, I did get blood clots, and now have to take coumidine (blood thinner).  I am really good at "blocking out" information I don't want to hear.  I just had my 6 month dr appt, and my oncologist mentioned Lucumia.  It scared me death.  After talking to my mom about this she said that the doctor had mentioned this more than once.  Unfortunatly this was sometihng I didn't want to hear, so I "blocked" it out.  Does anyone have any suggestions, or comments.  Anyone that has taken Agrilin for a long period of time, what are the side affects?  So far I have noticed a lower sex drive, deep joint and bone pain, weight gain, tiredness, forgetfulness...any comments?  I need some inspiration!

Hi Ashley!  I am 23 years old, and got diagnosed with ET when I was 17 as well.  It was accidental that I found out that I had gotten ET.  I was extremely tired and went to get blood work done to see if I had anemia.  That is when they found that my platelet count was 1.8 million.  Thank God I got tested or I probably would have eventually thrown a clot.  I have been on Agrylin for about 5 years now.  At first I did not experience any side effects but over the past 2 years or so I have had periods of extreme tiredness, migraines, weakness, heart palpitations, and symptoms of depression.  My platelets now on 1-2mg a day range from 400,000 to 600,000 normally. At one point about 2 years ago I was able to stay on 1mg for about 1 year but my count started to creep up again so now I am on a higher dosage. 

I am actually going tomorrow to see my hematologist.  He wants to look at switching me from Agrylin to Hydrea.  I am uncertain as to what to do since studies have shown that Hydrea may lead to leukemia.  My doctor has also mentioned leukemia to me as well.  Like you I block this out because I don't want to spend my life worrying that something bad like this might happen.  I try to take it one day at a time and I try not to constantly think about what COULD happen.  Ya know they say that 95% of what we worry about never happen! :)   I was tested for the Jak 2 test and resulted in negative so that was good.  I also have had 2 bone marrow biopsies and everything came back good. 

 I hope that we can encourage each other through messaging.  This disease can be very discouraging due to the side effects and chances of pregnancy.  I am keeping positive and hoping that God gives me a miracle.  But I always thank Him because I know that it could be a lot worse.  I hope this helps ya know that you are not alone!  It was comforting me to see another young woman with this diagnosis!  I will remember to keep you in my prayers as well!  :)

Hi,

I was in the same situation as both of you.  I have been dealing with ET since I was 25 (I am now 36).  My first treatment was anagrylide with asprin and after 5 years I was so scared when my hematologist told me that he thought I was heading down the path of leukemia as my red/white cells were not normal anymore.  I live in Boston and went to the best hospital in my area (Dana Farber) to get a second opinion on my treatment.  I talked with a wonderful doctor who only deals with ET patients and he sat me down for 2 hours and explained everything.  To summarize what he said:

- He has never prescribed anagrylide with asprin as it has proven to give you myelofibrosis (scarring of the bone marrow).  The two together were scarring my bone marrow to the point where the red and white cells could not make it into my blood stream.  He showed me studies on this topic that not only talked about myelofibrosis but also about how much better hydrea was to treat ET as there were fewer instances of heart palputations, blood clots, headaches, etc...

- He told me that my bone marrow could recover from the myelofibrosis on hydrea.  I have been on hydrea for over a year and it went away within the first 2 months. 

- He told me that people that have tested positive for the JAK2 mutation have a higher rate of their ET turning into Leukemia.  There is the chance of this also happening if you are being treated with anagylide or hydrea, but it dramatically goes up if you test positive for Jak2.

Please use the information above to at least ask you doctor questions about what you have.  I can tell you that I stayed with the doctor at Dana Farber as he specialized in ET and wasn't a general hematologist as my previous doctor.  The main difference I have seen is that my new doctor is up on the latest and greatest studies, developments, and treatment plans vs. having a doctor that just treats a wide range of cancers. 

Hope this helps.

Take Care,

Gina

Thanks ladies for you messages on the board. I was diagnosed in my mid-20s and I'm now 37. My count has always been around a million but I don't have any regular symptoms that negatively affect my life. I will rarely have an optical migraine (flashing in my eyes for about 10 minutes) but that is the only periodic symptom I have dealt with. Before I had children, I was never on any medication for this, other than an 81 mg aspirin daily. My hematologist knew I was not interested in taking meds to lower platelets just for the sake of lowering platelets. My #s were stable.

After giving birth to my first child at 31, and breastfeeding for his first year, I went back on birth control (just like I'd taken the 13 years before having a baby). I forgot to get back in the habit of the aspirin though, and I ended up having a TIA 5 months after getting back on birth control. So the mini-stroke put an end to my birth control, and got me back into the hema. office for lots more bloodwork. He put me on Agrilyn, and I hated it! The side effects were terrible, heart palps, headaches, fatigue. Ugh! After trying it for 4 months and seeing no change in my platelets he told me we'd have to up the dosage. I decided to seek a 2nd opinion.

 Then a year went by while I avoided that 2nd opinion. I had my PCP or gyno check my #s whenever I was in there. And after getting pregnant with my 2nd child I was referred to a great hema/oncologist who I am still seeing. She increased my aspirin to 325 mg/day and watched me during pregnancy and after. My #s went down during pregnancy and then rose after I delivered. She kept saying she was interested in my starting drugs after I finished breastfeeding. And wouldnt' you know it, I avoided seeing her for a year after I stopped BFing. I finally returned yesterday to find out my platelets are still in the same range, but admittedly higher than they've been before (1.2 mill while I would usually be .9-1.1 mill).

So she is talking Hydrea, and wants me to continue aspirin and return in 3 months to recheck #s. I am very active, training for a triathlon, chasing after my young boys. I feel great! She brought up something new to me, that ET can lead to leukemia. But based on the research I've done online, that is very rare and it doesn't sound like a great reason to go on these harsh drugs. I appreciate the info on Jak2 and will bring that up with her when I see her again. 

Any other feelings on the need to go on the drugs if you're not trying to reduce a symptom? I just can't get enough information on whether the drugs prevent cancer or may possible cause the cancer. I think they do so much of this data with older people that are getting cancers anyway, its hard to know what to do as a young person!

Wow do we have similar paths, it is unbelievable!

I was getting ocular migranes and did a lot of research and cut out the foods that were thought to cause it and haven't had one since...I could attribute almost all of my ocular migranes to foods like chocolate, alcohol, dairy, and MSG.

I was in the same boat as you...had a TIA event but mine was after working a ridiculous amount of hours and was severly dehydrated.  If it wasn't for that issue my doctor recently told me that he would not have me on any meds except an asprin a day. I am on a low dose of hydrea now after going on a very high dose to start.  The great thing about hydrea vs. agrilyn is that when I missed one dose of agrilyn my counts would go up immediately...on hydrea it takes a very long time.  I take one pill a day (used to take 3) and completely question whether or not I should be on anything at this point as you are correct, the longer you are on this medicine the more chances you have for getting cancer.   We are way too young (I turn 37 next week) to be tied to a medicine especially if we are having no side effects.

I am headed back in May for another visit where we are going to talk about taking me off Hydrea and only take an asprin.  I will let you know how it goes.  I'll keep my fingers crossed that you do not have the Jak2 gene.  :)

 Take care,

Gina

 You should see a blood specialist. Treatment  includes hydoxyurea and aspirin. Need to rule out secondary  cause too before   taking  medicines