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ET with CALR+ type 2

Hi Fellows,

I am 29 years old and I have been diagnosed recently with ET, CALR+. It was a really hard period the last months, as I was trying to cope with all the tests, outcomes and struggling to understand my condition.

Looking back to my blood tests it seems that I might have it for at least 3 years ( when initially my platelets begin to rise - around 600). The routine blood test that I have done this year, showed a value of 850. During all the stressing investigations it rose to ~1100. Before having the result of CALR, being only Jack2 negative, my doctor put me on anagralide. After 10 days my platelets got down to 700.

My biopsy showed an increase number of megakaryocytes and also a mild fibrosis (MF1). My doctor suggest to have a second examination of my biopsy. This is the thing that scare me the most ... the idea of progressing to PMF. In two weeks I am scheduled to run another blood test to see the medication efficiency. I am looking forward to see what change in my treatment bring the CALR+ discovery. I am not sure there is other treatment (interferon) available in my country, other than hydroxyurea and anagrelide.

All the best

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Hi m4d4lin

I too am a newbie, raised platelets with ET the suspected culprit. I find out if there are any mutations in a couple of weeks. I know how you feel - the fear of what is to come can become rather overwhelming.

One thing I have learnt here is that there are a lot of people on this forum who have been through what you are feeling and will offer you honest and helpful advice based on their own experiences. I for one feel much more positive about my life ahead.

Good luck and warm wishes to you. Maybe there is somebody also from Romania who can let you know what choices you may have.

Gill x

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Hello and welcome to our forum, we can all understand how you are feeling at the moment, it is a very scary time when you are diagnosed. I would urge you to read as much as you can on our website mpnvoice.org.uk and also have a look at the real stories and videos, this may help you to understand more about your ET. I am sorry but I don't know what medications are available in Romania, you will need to ask your doctor about this. Keep in touch with us all, we are here to help and support you. Best wishes, Maz

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I couldn't take the HU, exercise intolerance etc., insisted on Pegasys and have complete remission. Was on Peg for 2 years and since then nothing but baby aspirin. I have been off all meds for 7 years and perfect numbers......I am a Pegasys advocate!

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Hi Rebecca, are you also carl+ type2? How often is your dosage on Pegasys? Is it self injection? Happy to hear that it went into remission. Happy for you.

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slow response, sorry...45mcg once a week, not cal+ type 2. Jak 2 positive

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Hi I have been taking anagrelide 5 x 500mg a day for nearly two years - I have a crossover between ET JAK positive and an MDS. I do fine on the anagrelide and have few side effects. I am not able to take Hydroxy. X

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I like Hydroxyurea, take two daily and my PV is well controlled, very few side.effects apart from mouth ulcers from time to time. BUT mine is uncomplicated. You need good advice and keep in touch with Maz, she and Prof Harrison have been so helpful with advice. I am in France, very good and comprehensive healthcare, but living in a rural area and my local doctor didn't have a clue. I go to Toulouse for treatment and advice now, a specialist haematologist/oncologist in a large cancer unit. I see him every six months and have regular blood tests, know what to look out for. Very best of luck. The MPN support group has been great for me. Knowledge is power!

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Hello M4D4lin - My platelet count steadily increased in 2001 - 2004 (hit 750 or so in 2004). My doctor recommended I see a hematologist in 2004. I took a daily 500mg Hydroxuria from 2004 - 2010. My platelet count decreased and my hematologist started cutting down the frequency of Hydroxuria, stopping completely in 2012.

I didn't notice anything while taking Hydroxuria but after stopping it I noticed my thinking was much clearer after several months. I also noticed that my feet had fewer issues after stopping. My only issue with ET at the moment is my hemoglobin count is low. I take about 4000mcg of sublingual B12 per day to help keep my hemoglobin up. I had a bone marrow biopsy in early July this year that was inconclusive. I don't notice being anemic even though my hemoglobin count is lower than normal. Taking it day by day.

Take care, and good luck to you.

Bippers

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Hello, I am also Calr ( type 2 ) ... for your information my platelets were high at a young age, and climbed until 1.5 million. Have also grade 1MF. If you can, please try interferon (pegylated version ). You are too young for Hydrea or Anagrelide. Feel free to join our CALR support group on Facebook 😊

facebook.com/groups/1889866...

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Thank you all for your messages. I've read this group messages since the beginning, it helps to ease the panick. I am waiting to see what shift would bring the CALR mutation to my treatment and overall diagnosis. Keep you updated.

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Best wishes, it is scary but try and stay calm, breathe then breathe again,xxxx

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