I’m new and so pleased that this organisation exists.

[trotty100]

I had my diagnosis of thrombocytaemia on 1 Aug 2018 following high white (platelet) count on a routine blood test

I was prescribed hydroxycarbamide 100 mugs and after 4 weeks my levels had reduced From ? 7,500 or is it 750 to 4,500 /450 I was told this was a good response to treatment.

My next months treatment was interrupted due to surgery and I had to stop treatment for 14 days. My white celllevels went up again to around the original high levels.

I have just seen the haematologist following a further 12 weeks of treatment and have been told my levels are high and unstable. I am having a bone marrow biopsy in 1 days time and an abdominal scan in6 days time.This has led to various questions without answers at the moment It was a great help to make contact with MPN at this stage and to learn there is a wealth of information and support

I am 81 years old and know my time is becoming more limited but I am optimistic by nature At my initial diagnosis I was told that this illness is not life limiting.

I look forward to being part of this community

[mhos61]

Hi trotty100,

Welcome to our friendly forum. You will find plenty of support with likewise people here. I can remember the relief I felt when I came across this forum after my ET diagnosis.

I hope your BMB goes well. It maybe that you just need an increase in your medication to reduce your platelets further. Your haematologist will know what’s required.

Take care

Mary x

[trotty100 in reply to mhos61]

Thanks,lovely to have had such a speedy response,I feel part of the community .

Margaretx

[Lemon123]

Hi trotty100, and welcome

Like mhos61, I was really pleased to find this friendly, supportive forum. I was diagnosed with ET JAK2 positive in May last year, I'm in my mid 60s. As MPNs are rare, it's been really important to me to know there's a reliable source of information, and a place where I can ask questions alongside others travelling a similar journey. I hope your BMB goes well, and send every good wish to you.

[trotty100 in reply to Lemon123]

Thank you it is so good to have the support ,means a lot

[Mazcd Partner MPNVoice]

Hello Trotty and welcome to our forum, I am glad you have found us. I would suggest that you read information on our website mpnvoice.org.uk as well as the posts on here. I hope all goes well with your bone marrow biopsy and that it isn't too uncomfortable for you. It will take a few weeks for the result to come back, but once you have the result your consultant will be able to discuss ongoing treatment with you. Just remember though that your platelet count will go up and down, even when you are on medication, and the dose may have to be changed a few times to get the optimum dose to keep the platelets at a steady count, they go up and down for many reasons and it happens to all of us, so try not to panic when you get your results if they have gone up. Anyway, let us know how you get on with the bone marrow biopsy. Best wishes, Maz

[trotty100 in reply to Mazcd]

Thank you I will keep in touch

[MiltonBradley]

Welcome! I was diagnosed last February after a heart attack at age 58. This site has been a God send; so much helpful information!

[trotty100 in reply to MiltonBradley]

Thank you I hope you are recovering well .I am so pleased to be part of this “family”

[isimmy]

Hi Trotty100 and welcome to our group.

I have learned and understood far more about my condition, ET Jak2+, since joining this forum just over 12 months ago than in the previous 13 years since I was diagnosed.

It is a great place to raise your questions and concerns because the replies that you will get are from people who understand and have been through the same.

People outside our community do not understand our issues because, in most cases, we look perfectly well on the outside.

Good luck going forwards.

[trotty100 in reply to isimmy]

Thanks a lot,I’ve just had my bone marrow biopsy and am about to write.again in the hope of some further light on my experience.