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Hi
it depends if you see the possibility of Leukemia in 10/15 years as not a major adverse side effect by HU. I am 34 and I was told that if one day I want a child and less likely to have Leukemia that I shoud be on Anagrelide but everyone on blogs seems to say HU is better. Is anyone on Anagrelide? Can you tell me how you are taking to the medecine, your experienced side effects etc?
Hi I was on anagrelide for 3 years. I was diagnosed when I was 40 with platelets at 1.3 million. I had blood work results on a Thurs they had me in to see a hematologist on Friday. I also went through the bone marrow and bone chip, which I'm sorry to say was excruciating and I've had 3 children with no epidurals. The Dr had to do the bone chip twice cause the 1st one was an incomplete core sample. He also informed me that I had very hard bones, don't know if it hurts everyone that much or not. My sister has also been diagnosed with ET at the age of 36. She also said that the chip core sample hurts. My mothers platelets have recently been moving up the scale, 600s now, her Dr also wants a bone marrow done. From what I'd read it is rare for this to run in a family. I've been off of agralin for 4 years, but still have blood done every 3 months, for platelets and cholesterol, this week the blood came back high again 900's, it had been in the 300 and 400's for so long with out the meds. The Dr said they now don't treat ET with meds til in the millions, so I'm back up there, my family Dr is the one who has been doing blood work every 3 months since my oncologist quit. Now they want me to go to the James cancer center in Columbus. Not looking forward to all those tests again.
I forget to mention while on anagrelide, that I did have side effects such as sore bones, muscles and joints. It would hurt for my husband to hold my hand. Right now I'm going through the same thing again and I'm not on the meds but my platlets are up, so I do think it has something to do with the platlets too. I have the headaches, joint pain and sore bones, even when one of my girls would lay their head on my hip if we were laying on the couch together, it would hurt, I'm also bruising easily again. It's been 4 years since I've been off the meds, I was hoping everything was all good!!!
I was also told that if ET is left untreated that it could become leukemia, so I don't want to take any chances.
there maybe an underlying cause of her elevated platelet counts...Have they done any testing as to see why they are high? I know the object is to lower the count but they also should try to find out WHY they keep climbing so high...
I would also recommend a specialist...
Like I said once before, You would not want a Ford dealer trying to fix your Jag right? You need a Jag dealer...same thing...
It's been a year since I posted this thread and just wanted to report back that my wife is doing great. She takes 1 pill (500mg) of hydroxyurea on odd days and 2 pills (1000mg) on even days. Her platelet count is down around 400,000, and is being maintained well with the drug, which she'll probably have to take for life. No side effects, and recheck numbers every 3 months.
It's been a year since I posted this thread and just wanted to report back that my wife is doing great. She takes 1 pill (500mg) of hydroxyurea on odd days and 2 pills (1000mg) on even days. Her platelet count is down around 400,000, and is being maintained well with the drug, which she'll probably have to take for life. No side effects, and recheck numbers every 3 months.
Awesome thanks for posting back.
You might want to find sites that you can give drug input on so other people know
I wanted to update, my last count was 1007, as I said I was being sent to James Cancer hospital in columbus, he really didn't have much to say except they don't treat til 1.2 million, as you can see I'm climbing. I've gone back to having blood work done every month now instead of 3, he also wanted to do a Jax blood test, which is a genetic test and I had already had it done. So right now I just pray I don't get a clot somewhere, I go again tomorrow for blood work again. we'll see. Right now my only symptoms are the headach and the bruising. I can't believe they want the counts to go so high before treating. The 1st time I was diagonise they said that over a million was not to be messed with!!!!
in my sons case his count would go from 400 to 500 to 700 then back to 400 when it would be retaken he was told to go for a bone marrow just to check but never did does anyone think its that serious he is 25
in my sons case his count would go from 400 to 500 to 700 then back to 400 when it would be retaken he was told to go for a bone marrow just to check but never did does anyone think its that serious he is 25
FWIW, bone marrow is not a guaranteed, safe proceedure
When my dad had AML Leukemia, we didn't even consider it as the odds were 1 out of 3 survive.
This last time I was at the James, they said that they will not even begin treatment til the counts reach 1.2 million. I also asked why mine had spiked after 4 years (1.1 million) of between 400 and 600 hundred, without medication. the dr. said that there is lots of reason, could be because of an inflammation you are not even aware of. there is also a Jax2 blood test your son could have done instead of the bone marrow test. a heck of alot less painful!!!
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