MPN Voice
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Introduction

Hello my name is sandra I have ET Iam on hydroxycarbamide twice Dailey Iam 52 and had it since January 2018 I am so happy to join this group as it’s been very helpful to me thank x

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Welcome Alfielewis,

Glad that you have managed to find our forum. It is supportive, informative and above all, friendly. It is early days in your diagnosis, and you’re probably trying to make sense of it all. I’m still learning - and then when I think I ‘get it,’ there’s always something else I need to analyse. Feel free to ask questions on the forum and someone will avail.

I also have ET diagnosed in early 2016 and am on one hydrea a day a Monday to a Friday with weekends free.

Mary x

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Sorry Sandra, I didn’t note your name in your introduction, and addressed you by your user name.

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Thank you for welcoming me this means so much .

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Hello,Sandra, and welcome to the forum where you will find lots of lovely people with lots of advice and good ears if you ever want to have a moan, we are all here for one another.

Jean

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Thank you so much jean

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Hi Sandra,

I just wanted to welcome you to the forum and to say that you will find great support here as the forum is made up of wonderfully kind and helpful people.

Stay in touch and take care.

Susan

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Thank you susieq75 I will stay in touch you take care too .

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Welcome, Sandra. I also have ET -- diagnosed about a year ago. This forum is a godsend -- lots of friendly people with very good advice.

Take care,

Kim

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Thank you Kim I am so glad I have found this forum with all you lovely people .

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Hi Sandra... :-)

Welcome to our rather exclusive little club. You are in good hands here with many fine people that can share their experiences with you...

Do try to be patient with yourself... It can all be a tad overwhelming at first, but in time, you might find like many of us here that life really goes on much the same as before...

Best wishes

Steve

(Sydney)

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Thank you Steve I have taken your good advice on board I am feeling a lot better since joining this for forum I am glad to have such wonderful people around me that is willing to listen and understand carnt ask for more .

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Hi Sandra. Welcome. Glad you have found our elite Forum! I too was diagnosed with ET about the same age as you. This was later rediagnosed as PV (the original diagnosis was ‘unclassified’ but treated as ET) and started Hydroxy about six months ago. Do hope the Hydroxy is kicking in. And ask away here. There’s always someone who can offer advice / experience / support. Wishing you well.

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Thank you so much ebot I do think the hydroxy are kicking in but very slowely as they have just doubled my doasage wich was a bit of a worie but since joing this group I have found that as to be a normal thing if you no what I mean it’s good to know that I can talk to you friendly people thank you take care .

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Hi Sandra. Welcome to this amazing website.

I was also diagnosed in January this year but it is clear that I have had ET for many more years, probably from my 50s. I am now 66 and nobody believes it because I 'look so well', which can be quite annoying to hear when you feel so bad. I have learned to be relieved by that comment now because it allows me to tell nobody about it. I prefer that. It is my life and with the help of my husband and this site, I just treat this as 'the new normal'. That phrase has helped me more than anything in getting used to the life now. That and this forum have saved my sanity, which initially went into major decline on diagnosis.

I am lucky enough to be on Pegasys now and platelets are in the normal range as a result. Still with the massive side effects of the drug but it's doing the trick!

I sincerely hope your experience on this forum is as beneficial for you as it has been for me. Without it, my understanding of MPNs and particularly ET has developed so much and with a haeme who tells me nothing, I have needed it so much.

Everyone here is experiencing something, which may be akin to your own and therefore, if you ask a question or impart information there will always be someone who can answer you or support you. Have a great day. All the best Penelope

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Hi Penelope mk for welcoming me to the group I am glad to hear how well you are looking . Sorry that you feel bad with your side affects I too don’t like to tell people about my ET as it’s hard for them to understand and for me to explaine I don’t understand much about it myself I am learning a lot from this lovely group I am so glad I have came acrid I do hope you can keep I touch and let me know how your doing from time to time please take care off yourself and thank you .

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Hello!

Glad you found this site! I have been so thankful for the people I have met here and the support! My story is similar.. diagnosed in January of 2018 with ET, Jak2.. started Hydroxy last month...this site helps keep me grounded as there are so many helpful stories.

Hang in there and post when you have questions! Praying for you and all the folks here! God bless!

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Hi Sandra, welcome to this really helpful and friendly website. I just joined a couple of weeks ago and have found it a comfort knowing others are in the same boat. I was diagnosed with ET in July after a blood count showing high platelets. I don't know for how long they had been raised. At virtually the same time I discovered a breast lump (cancer) which has been removed and I am now going to have 3 weeks Radiotherapy beginning 22nd October. I was started on Hydroxycarbamide just under 3 weeks ago on 500 mg once a day which I've got on very well with but I now have to stop because of Radiotherapy. Will see Haematologist on Friday to discuss. Also on Aspirin one a day. Glad to have you on the forum. Keep well, best wishes Fran.

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Hi fran thanks for your message what a strong person you are sorry to hear about the radiotherapy please keep me informed how your doing Iam sure once the radiotherapy is finished you will be back on hydroxy doing well good luck for Friday stay strong best wishes sandra .

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Welcome to the group, I hope we can be of assistance to you!

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Thank you Johnsb Iam finding this group very helpful and uplifting already so so glad I joined best wishes sandra

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Thanks Sandra. Will let you know how things go.

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hi Sandra, welcome to our forum, glad that you have found us, I can't add anything to the lovely replies you have had, other than to say, we are here for you. Kind regards, Maz

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Thank you so much maz Iam so glad that I have found all you lovely people I hope I can help you all as much as you’s are helping me.best wishes maz

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Hi Sandra,

You are very welcome to our forum' I found out about it a few months back at the MPN forum in Dublin, I am PV jak2 neg diagnosed 13 years ago with very little support until finding this wonderful forum. You will always find someone here to lend an ear.

Kind regards

Garry

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Thanks Garry I too found out about this group at a Mpn in Liverpool and so glad I did sandra .

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Hi Sandra, I’m a newbie too. Diagnosed 18 months ago at 51, knocked the stuffing out of me. On Hydroxycarbamide and aspirin. Finding this forum really helpful, as past 18 months have felt quite alone. Would love to know what symptoms you had or have?

Jackie

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Hi Jackie I have got ET diagnosed January gone I still carnt get my head around it Jackie I am still trying to understand it all I am on hydroxy and aspirin same as you they doubled my meds last week as my platelets we’re going down but very slowly so I take two a day 😞I know what you mean by feeling lonely not many people understand it that’s why I love this group we’re all hear for each other it’s a big help message me anytime Jackie I am 52 best wishes sandra .

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Thank you Sandra, I will. Like you say it’s difficult to talk to friends about it. Yes I’m loving this group, wish I’d heard about it earlier. I too found out about it at the Liverpool forum last week, were you there? Jackie x

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Yes Jackie I was there with my mum sat at the back right hand side I had to leave at 3.30 are you from Liverpool ?

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Hi Sandra, I was there half way down on the left with my husband, you must of left at coffee break? I live in North Wales. Are you from Liverpool?

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Ps I changed my user name and pic when I first done it with Alfie lewis I dident realise it wud be shown

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Yes Jackie I live in childwall I go to the royal hospital and my hemomatolagist is doctor n butt he did a speach & Racheal who also did a speach are the best I could ask for there amazing so I carnt complain they take the time to listen and answer any questions I have . They also told me about this group .i was wondering how you find being on hydroxy ? Do you have any side affects as I always feel tired had to drop my hours in work I don’t really like the idea off being on these meds they scare me but my platlets were much too high how about you?

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Hi Sandra, my doctor is Dr Heartin who did one of the talks. He is good, but sometimes I feel I don’t get the answers or support, but that could be just me, since becoming a hypochondriac! In the early days of diagnosis I did consider getting a second opinion. I’m also very tired all the time and have dropped my days in work and stopped offering overtime. I ache a lot in my bones but after reading things in heat I think that’s the disorder. I can’t drink alcohol much, gives me really bad palpitations and makes me feel awful, big downside, not that I was an alcoholic but do miss it. The worse thing at the moment is constipation, drunk lots of water, eat lots of fruit and veg but it doesn’t help. I started on two 500g a day but now on 1 a day and two at weekends. Same, don’t like taking them, scare me, wish I could try something else. A few people at the forum were saying they have been taken off them as there platelets have come right down, and they were older. So not sure how that works. I get a lot of pain in chest and left side, so a couple of people on here have said to get my spleen checked, which in fact Dr Rachel told my husband in Liverpool when he asked. My husband thinks it great I’ve found this as I’m on it more than Facebook! But it’s just what I needed. Jackie x

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Another thing is my arms have gone all pigmentation in the sun even with a high factor on, so that worries me as a side effect of the Hydroxycarbamide can be skin cancer, love my holidays too! Jackie x

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Hi Jackie I too don’t like to ask the doctors to many questions I f eel like I have become a hyprocondiact so we have lots in common . My bones ache too like yourself I also have constipation I wish I could try somethink else too I don’t think that it’s good for us to stay on them long term I also agree with the people in hear for you to get your spleen checked out as they found that mine was enlarged through blood tests but not much to worie about they said so I had a bmb before going on the meds as the doctor said these tabs were on could efect our spleen so I am thinking your pain could be your spleen as I too had the same pain but it just went away after a few weeks I am so glad to share this with you I too am on this now more than face book lol so glad to talk with someone with the same problems as me I hope you feel better soon and get that pain sorted out a quick word with your doctor could sort that out as I wud of thought it wud of come up in your blood tests if you had a enlarged spleen like mine did when do you see your doctor next ? Sandra .x

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Hi Sandra, thanks for your reply, really appreciate it. It’s great being able to offload worries and queries with someone who understands. I next visit my doctor 5th Nov, but I am going to ring my nurse to ask about a scan on my spleen. Just want to rule things out or you end up constantly worrying. It doesn’t help I work in the hospital! Jackie x

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Oh Jackie I don’t blame you we worrie enough I wud do the same we must rule things out let me know what your nurse says .i do understand I also glad to talk with you sandra x

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