Hi,

I've registered this account for my mum (67) who has Essential Thrombocythemia - she's not too up on the techie side so thought I'd get the ball rolling for her.

We've been trying to find out if there's anything else apart from what meds she's on now which could help lower her high platelet level. She has been over 1,000 but is now around 700. The lowest she's been was 600 and apparently 400 is the 'normal. I notice on the boards people talk about levels in the hundreds of thousands - perhaps here in the UK we use different numbers, or just cut off the last three zeros?

She's currently on 4 Xagrid a day plus a low dose of aspirin (75mg) but the doc wants to put her up to 8 per day but she hates all the side effects - headaches, the runs, etc. so we were looking to see if there's anything else which we can do to supplement this - perhaps dietary/alternative or otherwise.

She was on different tablets before but they didn't work and according to the doc there isn't anything else to do apart from Xagrid and she's worried as the doc said that if they stay high then there's sudden death problems, which is obviously a complete worry. She's recently recovered from breast cancer and had chemo for the platelets but that didn't work plus made her more ill.

So this is a sort of introduction - I'll be reporting back to her on replies, and hopefully when she's well enough one day she'll get on her laptop and post too - she mainly tries to do other things than get on the computer when she's well!

Love to you all,

Concerned Son

there are several options for treatment ET ... hydroxyurea/anelgrelide(as you mentioned)/alpha interferon/pipobroman(in Europe but not here in the US) ... what was the other pill you mother took ?

there are several options for treatment ET ... hydroxyurea/anelgrelide(as you mentioned)/alpha interferon/pipobroman(in Europe but not here in the US) ... what was the other pill you mother took ?

Thanks for your reply - just spoke with her and she said they tried the hydroxyurea but that didn't work so now she's on the xagrid.

I thought there wasn't anything else but she said the doc told her about interferon but didn't want her to go on that cos it would make her more ill and she's only heard of people going on the interferon when it's really last legs stuff so really doesn't want to go on it.

She was interested to see if there were any more treatments that perhaps the doc hadn't told her cos of the cost of them but from the sounds of it there aren't.

She's also into alternative remedies but we haven't found anything online which points to anything which could help - in terms of remedies, dietary stuff or whatever.

So looks like interferon is the only other stuff if the xagrid doesn't work.

hey i just want to reply i thought i could help a bit first let me start by saying hello to you and your mother x i also have essential thrombocthaemia i was dignosed in april 2008 and i am 17 years of age not the luckiest of teenages i know. my platelets are other 1200 i have a lot of sypmtooms 4example bleedin gums erm really bad pins and needles not 2 nice heads akes nearlly every day and can last all day i am always tired just lattly i have not been gettin up till 1 in the afternoon i have an abnormal bone marrow i also have a platelet disfunction. my specilist and nurse specilist have told me there is a chance it could turn to an accute lukiema so i am hanging on to every stread my keepin y fingers crossed n jt getitn on iwth my life and not thinknig about it i know tay ohe only know only a bone marrow transplate can cure it but they will only give meit if it develops to lukiema which scares me because thenit could be to late but i am going to ask if we could start lookin for maches now i am only 17 i dont have any luck and im worrie that if some one in my family is a doner i want me ble to have it every one has a illness in my family and some of them smoke so not that good which absolutly terafise me :-( i am not yet on treatment i will at some point be startin inteferon but they want let me start that till my platelts rwach 1500 or exceed 1500. my mother has helped me a lot because some times i can really get sad she says to me i have to remeber they she got thriugh when she was really ill she got through by thinkin there is always some one worse off then youu so i am going to try thinking like that. i aint on asprin i got taken off asprin within 3 weeks as i had bleeding gums about 3/4 times aday i am quit unluky in some ways but i dont think about yeah ill be onest wheni go to bed thats when i do all my thinking and i will be onest i lay thinking and crying for 3 hrs before i can finally sleep but i aint going to think about any more i have a life to live and i am going to try and live it the best i can because whith all my family and friends here i love them so much and there love will help me through this i am strong i will fight this i am younge and i will not give up i wish your mother or luck please tell her i say hi and tell her to take care i have also herd that kewi helps low platelet counts so i hope that will help as well i also live in the uk good luck all my best stay in touch please please keeep me updated onm your mother and how you are feeling jade xxxx

Hi Jade,

Thanks for taking the time to reply - I tried phoning my mum but she must be out, but I wanted to reply to you now so you don't think I didn't read your reply!

I'm so glad you're taking the positive thought way on this - it's been shown time and again that positive thought can help heal your body.

When I get hold of her I will tell her about the kiwis, I know she likes those!

My thoughts are with you.

heyy thank you ever so much for your eply was nice of you hope your mothers platelets get lower and her health gets better i wish you the best of luck - the best vof luck wished to you both take care jadey xx

Hi Jade,

Just on phone to mum and relaying message for you from her:

"Thank you for your reply, I was very touched by it and understand exactly how you feel. I have the same headaches, tiredness, bleeding, etc. and can get very down and low with it all but having beaten breast cancer with no suitable follow up medicine available, only a positive attitude and spiritual belief that I would beat it got me through and I am determined to do the same again. My thoughts are with you and I hope to contact you soon - I have another hospital appointment tomorrow and unfortunately my levels are back up again so a little depressed as you can imagine. Thanks for the tip on kiwis, the nutrition angle really helped with fighting the breast cancer. It's a bit hard to know what to say as I'm on the phone and can't see what's there so hopefully I'll be able to figure out the email soon and get back in touch with you. Love and take care, Megan xx"

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