Hi @Erica . I have already done that, but there are no easier options unfortunately.
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Thatās really tough @Chris1. It sounds like you have looked into all the different options. I really hope you find the one with the least side effects for you.
Please keep us updated on how you are doing X
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Thank you @Nichola75 , I will.
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Hi Maureen, I am sorry for the long delay. I have been having such trouble trying to change my passwordā¦ I have been home for three weeks now. I had a haematology appointment two weeks ago and my platelets were down to 740 - I am no on Hydroxy every day with 2 on Sunday and it is working for me. My blood count was in the 90s, so I was really pleasedā¦ I am still struggling with mobility and have to walk with a frame round the house. My son took me for a short walk with the rollator, but I found it very hard going. I do so agree with you about having someone to attend appointments with youā¦ One of my daughters is usually with me. I see that you have appointments at Guys Hospital. I hope that things work out for you. Keep in touch. Love Kate xx
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@KateS How are you?
Any progress with walking and getting around.
If you can let me know how you are.
Take care
Maureen
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Hi Maureen, Good to hear from you. I am still struggling to walk. my physio stopped, but I have just heard from the community physio and she is coming to see me next week. I have also bee diagnosed with Graves disease- an overactive thyroid. This causes weakness in the bones - perhaps the reason , I fractured my hip this time. It has left me lacking in confidence and scared of falling again. I still use the frame in the house and the rollator outsideā¦ How are you? Are you still going to to Guys and how is the Interferon working?
Keep in touch, Love |Kate xx
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Hi Kate,
My name is Bonnie and I live in the US. I also have Myelodysplastic syndrome (MDS)/Myeloproliferative neoplasms (MPN) overlap with Essential thrombocythemia (ET). Iām taking 500 mg a day of Hydroxyurea and my platelets have come down from 1.2 million to 440k.
Very glad to know of another person with this particular combination of diseases as it is quite rare.
Glad to have found this forum and I send you all my best wishes!
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So Good to hear from you Bonnie. Good that your platelets have come down. How is your blood count ā hb? I have my next haematology appointment in two weeks time. I am hoping to reduce the hydroxy if my platelets are lower. When were you diagnosed? My very best wishes to you. Keep in touch Kate
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Hi Kate,
Just had a blood test yesterday and my counts are good. Hemoglobin is 10 and platelets are 438.
I was diagnosed with Myelodysplastic syndrome (MDS) with multi lineage dysplasia and refractory anemia in 2021. In March of 2023 I was diagnosed with Myeloproliferative neoplasms (MPN) (Essential thrombocythemia (ET)) due to a mutation of JAK2. That is why I am taking 500mg of Hydroxyurea every day. My Oncologist says I will need to take it longterm.
So nice to meet you!
Bonnie
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Hi Bonnie,
. H Hope that you are doing ok. My hb is doing well with the Aranesp injections, but platelets still too high so hydroxy increased to 500 m daily with 2 on Saturday and Sunday. Am still struggling with mobility - tried to do a bit of gardening and ended up the following day with much pain and stiffness, which took a while to subside, then had a huge fright when I lost my balance and luckily fell into the arms of a visitor - a real reminder of my . vunerability. Keep in touch x
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Oh @KateS take it steady and really look after yourself
Please let us know how you get on
Hi Maureen itās so long since I heard from you and I often wonder how you are doing. I have had a very up and down year. I feel back to square one as my platelets are now up to 1000. Very disheartening. Also since my fractured hip, I can only walk with the aid of a frame. I hope that you are doing ok. Best wishes, Kate x
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Hi @KateS I will copy your post to @Maureen31 for you.
You can reply to someone by pressing āreplyā (bottom right of their post)
or using the @ and their tag name like @Erica , and several options might appear to click on. Remember there might be several people with similar tag names, hence Maureen31.
That is about the only handy technical hint I know!!! xxx
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Hi Kate
Itās lovely to hear from you. Iām sorry to hear your platelets have gone back up. I really donāt know why this happens. You are right it can be very disheartening and no can give you a reason why. It sounds like you are having a hard time in every aspect.
My platelets came down to 496 but then life threw me a curve ball and l have been diagnosed with breast cancer. I have had a lumpectomy and l am just waiting now to heal enough for radiotherapy. And of course the platelets went up to 695!!!
Itās also difficult navigating 2 different hospital trust who have very different ideas how to deal with Essential thrombocythemia (ET). One sad to stop all medication before my operation and then be sad no way should you be stopping your medication!!!
Anyway we have to try and stay positive but to be honest itās really difficult at the moment xxxx
Hope hope you get this message xxx
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Oh @Maureen31 I am so sorry to hear that it is really difficult for you at the moment.
You have so much going on and as you say different hospitals, and even sometimes different departments within one hospital, can be very different and difficult to navigate.
I was so impressed with being able to navigate my āpatient portalā within my hospital records and then I found myself at another hospital as well under another trust with a completely different āpatient portalā system that was so difficult and my new laptop could not print from it. I am trying to de-stress my life not stress it especially when I am feeling so unwell.
Please do use our forum to say how it really is to be you at the moment.
Your healing comes first.
Be ever so kind to yourself and please do keep posting
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Hi Maureen,
So good to hear from you, but not good to hear your news.I hope that they have caught the breast cancer in time. Will you need chemo after the radiotherapy? I was impressed that your platelet count has come down so far, as when I last heard from your it was still high.I tis very confusing when you get conflicting advice about stopping the Essential thrombocythemia (ET) treatment. When I have reduced the hydroxy, the platelets have shot up. I have just had a call from my consultant and he has put my hydroxy up to 2 a day and wants to see me early. I am staying with my daughter and son in law in Nottingham and will have an appointment when I go home in 10 days timeā¦ I really hope that all goes well with this latest problem. Keep in touch. Love Kate x
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Thank you Erica. It is so good to be back in touch with Maureen. Thank you.
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Hi @KateS enjoy your time with your daughter and son in law in Nottingham and please do let us know how your appointment goes when you get back.
Really spoil yourselves and look after yourself
Thank you Erica, you are always so supportive. Had a lovely day by the river, watching the birds in the fresh air and sunshine - good for the soul!
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Oh @KateS yes, so good for the soul, I can add stags baying and bright green paraquets squawking in the park today, really haunting xx