Re: ET

Hello everyone,

I am a 38 year old woman and was diagnosed with ET a couple of months ago.  It was caught during a routine blood test.  My platelets were then 1.2 mil, I had a bone marrow biopsy done and do not have the JAK 2.  I had never ever heard of this blood disorder before.  My platelets are now 1.7 mill. and I have gone on Hydroxyurea. For now I am taking 500ml and will be going up from there, as my body responds to the meds.  To tell you the truth it was very difficult going to the cancer clinic to pick up my drugs.  I just about broke down and cried.  I choked back tears from the moment I walked in there till I left.  Knowing that if I were to start crying I may never quit.  I'm just still trying to come to terms with this and I know it will take time.  I tell myself I have so much to be thankful for- a wonderful husband, 2 beautiful children, a loving family, great friends and a job I love. etc.  Anyway, this is NOT a death sentence, I know that, I just worry and feel sorry for myself at times. I love reading everyones stories, this is a wonderful site.  Thank you to everyone who has posted a message!   

Hello Lucky

I am 54 and was diagnosed with ET a few months ago after having an episode of Transient Global Amnesia. I am Jak2 positive and have been on 1grm Hydroxy for 10 weeks now. My count has come down to 375 and I feel better than I have for about 3 years. In fact I never thought that I would feel well ever again and had resigned myself to being perpetually tired and ill- it had become a way of life. The TGA was very frightening- much more so than this disorder we have, and I'm just so glad that I have started the treatment and had such a good result. Please don't feel so worried- some of the words used to describe this problem are more frightening than they need be and when the hydroxy has had some effect and you can stop thinking about it so much- I know you will feel so much better.

When I was first diagnosed it was all I could think about but now I look back ,only a few months , to how I felt, and how I feel now and I can't believe the difference. I hope you will feel the same.

Hi there,

The Haematologist who is treating me was very open and easy to talk to. I found some of the information I had recieved to be very depressing and quite scary so I asked him why there were very different opinions on the net about this complaint. He told me that it was quite a rare complaint but not very rare to a haematologist and that he treated quite a number in one day and some of these were people that he had been treating for 15 years or more. He did not think that the Hydroxy significantly raised the risk of Leukemia in the long run more likely the problem itself of the marrow working overtime could cause a progression. He did say that it was a possibility only- and not an abnormally high risk- that this disease could escalate. I am in the UK and we came to the conclusion that in other countries where Physiscians are being sued for everything these days- that they will give the worst possible scenerio to this illness to avoid possible court cases later. This made more sense to me than the drastic difference in attitudes from different patients to others.

I don't like having this problem any more than anyone else- and I don't like taking the Hydroxy much either- but I am grateful that I have a disorder that is controllable and very slow in progressing -if at all -into anything else.

Hi Everybody,

  I just found this sight and am astonished that I never found it before now,  I was hospitalized in April 2006 for losing conciousness for more than 10 mins. I kept having bouts of extreme heat overload followed by seizures, nasty migraines that only would turn down to headache form, during that time I had a cbc done and found platelets to be near 2 million, and they did a procedure called plasma apheresis "they took platelets out" kind of like a dialasis procedure from my juggler vein, absolutely no fun!, and of course had a bone marrow and jak2 test to confirm "ET". I too started hydrea, at 1500 / 1000 mg alternating days, and now have progressed recently to 1500 everyday as of a few weeks ago. My platelet count is currently at 782,000, hopefully it will go back down, it has been as low as 540,000.

Ironically I also have an autoimmune disorder as well which is also quite rare, it is called c1 esterase inhibitor dificiency disorder.

 I still at times go through all of the emotions of "why" and "damn" 

I am now almost 37 years old divorced, raising three daughters on my own "ages 6, 8, and 16," and too stubborn to give up or break down "humor works well for me" "I do find it" and look forward to being here for my daughters everyday.

I guess I am posting this to let whoever know that your not alone, and if I can do it so can you,  if anyone would like to know anything specific please respond, if I have an answer or experience I would be happy to share it.

I have been reading and learning about his for almost 3 years now, and the one thing is everybody is different with it.  If you just need to chat I am here too.

Hi Nicklebee

Great to hear from you- and so good to see you are quite upbeat about this. I must admit I swing from up to down quite frequently but I'm sure time will sort this out. I was only diagnosed last September and still feel I have a lot to learn. Get odd problems and never know whether to attribute them to the disorder, Hydroxy or anything else thats going around at the time.

I don't know anything about your other problem but you have obviously been given a double whammy to cope with!! I don't have any small children like you but I do have 2 grandchildren and I find that they keep me laughing and distracted from this problem. They are definately a reason not to give in to it.

 Keep well