Recently diagnosed with ET (CALR+)

Hi,

I'm new on here. I just turned 40 and have been diagnosed with ET (CALR+) It's very scary. What does the CALR mutation produce in the body? I found out from a regular checkup. My platelets are stable around 1500. I have changed my diet to consist mostly of food that prevent platelet formation. I also started a workout program to workout 30 minutes a day. What tests should my hematologist perform to figure out which risk group I am in? I don't have any other health problems, like high blood pressure, high cholesterol... Also, I was wondering if there were any Hematologists that specialize in treating ET(CALR+) My hematologist just wants to put me on hydrea but I am very reluctant at my current age. I have 3 small girls and can't have the fatigue with all we do. If anyone has any natural options that can help, it would be appreciated.

Thank you,

9 Replies

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  • Welcome on board - I have ET CALR+, diagnosed 14 years ago at age 47 and still going strong at 61..!

    There certainly are haematologists who specialise in MPN's and it could be good for you to see one of them for a second opinion. Where are you located..?

    CALR is a genetic mutation that causes ET. Nobody knows why it happens but about 90% of us have either that or the JAK2 mutation, never both.

    1500 seems to be the level at which most haematologists would recommend starting treatment in those under 60. I am on Pegasys rather than HU and find it very effective with no significant side effects. Do explore all the options before starting treatment. There is a lot of information about them all on the MPN Voice website.

    Good luck and feel free to ask any questions - there are lots of knowledgeable and supportive people on here..!

    Good luck.

    Andy

  • I am located in upstate NY. Thank you for your reply!

  • I'm in the UK but have seen plenty of references to MPN specialists in New York so I'm sure you'll find someone to speak with.

    You might also want to join this Facebook group for those of us who are CALR+ and which has global coverage

    m.facebook.com/groups/18898...

    All the best

    Andy

  • Hi there and welcome to this great forum.. I joined only recently myself having been diagnosed with PV after just turning 39 this year & with 2 small girls I have found the whole thing very scary too. However, as time has passed & with the support & advice on this great forum it has been so reassuring to discover I am not alone & am learning to live with my condition. I'm sorry I have no advice to give you but definitely mug up as much as you can about your ET & explore all your treatment options so you feel in control. X

  • Thank you Betsy! :)

  • Hi. I gather there is a lot of good work going on at The Mayo Clinic. I think it's the 'big' centre for MPN research. A quick Mayo / MPN Google should bring up a lot of references - I just did it - including one to a major patient / professional conference earlier this year. Worth perhaps following some of the speakers up. One was Prof Harrison from Guys so obviously no good! The Mayo isn't exactly round the corner but maybe you could ask them for the names of specialists in your area. It is DEFINITELY worth getting hold of a good MPN specialist. There seems to be a lot of mediocre care and advice out there. I just thank my lucky stars I live in London and the smart (and very senior) haematologist who initially diagnosed me got me referred on to Guys. Good luck!

    P.S. I completely understand your resistance to starting drug treatment. For what it's worth do ask about all the drug options including Interferon. The injectable version seems to be the drug of choice for younger patients. And check whether the options presented to you are being limited because of cost / policy!

  • Hi and welcome to our forum. We can all understand how scary this is for you, and the lovely people on this forum will definitely have lots of good advice to give you. There is an article in one of our newsletters about the CALR mutation and its discovery, you might find it interesting to read

    mpnvoice.org.uk/documents/n...

    we can also understand your reluctance to start any medication, especially as you have young children and are worried about the fatigue element, I would advise as Andy has done, to read as much as you can on our website about the different medications and also have a look at the videos of patients who are on different medications mpnvoice.org.uk

    Best wishes, Maz

  • Hi I too was diagnosed with platelets and mutation the same as you at 40. I was lucky as hydrea did not make me more tired, as it reduced the platelet activity so it balanced things out. I took it in the evening daily 4 x 50g, and platelets came down to 400 but went up and down a little. I managed very long work hours just like anyone else for 10 years. So I think it is worth trying as for me it was less disruptive to life than the alternatives. I am now on pegasus and I feel low and achy for 2-3 days the weeks I take it but it is getting less over time. Good luck with your treatment -I find this forum is very helpful .

  • Hi,

    The risk group you are in depends on your age (over 60 years means higher risk), previous thrombotic events and platelet number over 1000, so no specific tests are done to determine if you are low or high risk.

    I was diagnosed with ET at age 19, following a blood clot in left leg, platelets at that time were 1102 and it was needed to bring my platelets down as soon as possible so I was put on Hydrea 4 capsules a day. I didn't have a problem with fatigue, but my liver and skin, got the worst possible acnae, but all that was probably because of the large dose. My GP was trying to refer me to another hospital where they treated young patients with Interferon and about the same time Hydrea stopped working so I am on Interferon for the last 13 years. I don't have access to pegylated form (slow release form so you inject once a week or once in two weeks) so I use regular 6miu 3 times a week.

    I think Hydrea is easier to take, but I also think that Interferon is best treatment option because it can prevent myelofibrosis and even induce remission. I also know of people with platelets at 2000 who are not on any treatment, so each patient is different. There is no one treatment fits all or even one treatment fits most, but you can still live relatively normal life. New treatments are being developed and I am a strong believer in that someday there will be a cure for all of our diseases.

    If you have more questions I will be happy to help. I left you a reply with a link to MPN specialists on your question about US based specialists.

    Best wishes,

    Zlata

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