Newly Diagnosed - ET

I am a 35 year old female and have recently been diagnosed with ET, Jak 2 positive. Although I am on clopidogrel I am speaking to a new haematologist on Tuesday in relation to treatment. I am confused about whether all those with ET are treated with chemotherapy. Does it depend on anything, for example, do your platelets have to be above a particular level before you qualify for treatment? I think I'm desperately trying to find out if I have to have chemotherapy drugs because I am worried about fertility issues. The consultant I was seeing knew that my husband and I have been trying to conceive for a while, and that we have been refused IVF because of my platelets and so I am really concerned about what this might mean for us. Obviously I will raise this on Tuesday but am interested to know if how high other people's platelets have been when diagnosed or offered treatment. Thank you!

17 Replies

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  • Treatment depends on risk factors such as age (generally not an issue till over 60), platelet levels over 1,500, previous thrombosis and any other medical conditions that raise the risk of thrombosis.

    Many people can stay on aspirin or clopidrogel only for many years (13 years for me) and younger patients who do require treatment to reduce platelets can generally use Pegasys or other forms of interferon, which are safe to use during conception and pregnancy.

    Being male and 60 I have no direct experience in that area but know of several people who have had children with no problems while on interferon.

    I have been on Pegasys for 18 months and it works well for me with no major side effects.

    Good luck

    Andy

  • Thank you, Andy. I suspect that as I am considered overweight (can you tell I'm in denial?!) it might make sense that my original haematologist recommended chemotherapy despite my platelets only being between 700-800. This is all so confusing!

  • Not sure where you are from but in the UK there is definitely a growing trend towards avoiding use of chemotherapy in younger patients, especially those looking to conceive. Make sure you see an MPN specialist and explore all treatment options. The MPN Voice website has lots of useful information on the different types of treatment available.

  • Thanks Andy. I appreciate your comments. I am based in London and I am due to see an MPN specialist next week. I was really taken aback with the diagnosis as no one mentioned it was even a possibility or that they were testing for it, and I came home to a letter on Friday last week giving the diagnosis and recommending chemotherapy to be discussed in 6 weeks. I've spent this week researching the condition - thank goodness for MPN Voice and Macmillan - and I've managed to secure an appointment for Tuesday. I'm hoping for explanations and answers to my many questions. I'm also hoping for a good night's sleep!

  • Hi. I was 37 when I was diagnosed with ET, Jak 2+ as well. My platelets were around 600 when diagnosed. Now 4 years later my platelets vary from 800 to 1000. I am on aspirin only and was told that 1500 is the magic number. At our age they try to avoid any stronger meds for as long as possible.

    I really hope that you have an appointment with Prof Claire Harrison at Guys in London. I travel for over an hour to my appointments with her and she has been a fantastic support, as are the rest of her department.

    Good luck.

  • How long have you had ET for? When was diagnosis?

  • It's a big shock when you are first diagnosed with a chronic condition - I was in my 40s - but research is moving fast and treatment options becoming more varied and sophisticated. While it's not great to have a condition for life the good news is that many of us have few if any symptoms and can expect a normal life span - after a few years it's not as scary as it first seems..!

    Hope all goes well with your appointment next week.

    Andy

  • Hi

    Welcome to the forum.

    I think as others have said it is confusing and worrying but there is lots of help out there, and on here.

    The decision to go on the chemotherapy drug is based on risk factors, usually age, platlet counts etc and as has been said too normally its if they are over 1500 for younger people.

    They will also take into account any previous complications, if you have had clots before etc.

    The chemotherapy is a very mild drug, bu if they feel for whatever reason you need additinal treatment make sure you discuss with them your plans for a family as the other drugs mentioned on here are used more often for younger people in those circumstances, If you arent happy with what you are told seek a second opinion.

    Professor Claire Harrison at guys and thomas in london is one of the best in the world, so you could try and get an appointment to see her.

    All the best

    Paul

  • Hi

    I'm a newbie here to, just diagnosed last week. So glad you found this site as people are very supportive, informative and generally lovely.

    I'm 38, JAK2 positive (ET/PV) and rather overweight, with a platelet count of 650ish. My doc hasn't put me on meds because of my age, even though I am so overweight (he didn't seem bothered about my few extra stone which surprised me) and said that 1500 is the number they would consider meds at.

    I hope you get some answers to your questions.

    Take care and try not to worry too much x

  • Thank you all so much. It's comforting to know I have a way to go before I hit 1500! I tried to see Prof Harrison but it was too difficult as I was already under Barts. My appointment on Tuesday is with Dr Lambert. Based on your comments I'm surprised that my previous haematologist suggested chemotherapy - I wonder what triggered that decision for him. I guess I'll find out on Tuesday if my new haematologist agrees. I suppose it could be the difference between an MPN specialist and not.

  • Hi,

    I was diagnosed ET JAK 2 positive in November last year aged 45. I was immediately started on Aspirin then on 500mg Hydroxyurea 3 times a week. The reasoning behind this was because I'd had 2 clots in my spleen causing splenic infarcts so they considered me as high risk.

    The highest my platelets have been is 468 so nowhere near as high as the usual for people with ET. I wasn't happy seeing different haematologists at first so asked to see a specialist in Birmingham which I now do who is wonderful. I see her every 2 weeks at the minute and each time she is slowly increasing the Hydroxyurea so am currently taking 500mg 5 times a week, platelets this week were 368 however my haematologist wants these down into the 200's.

    I think it is as people are saying that we are all different. I was really worried about starting the Hydroxyurea however listened to the advice I was given and thought the benefits outweighed the risks. I've not had too many side effects from the Hydroxyurea apart from feeling a little nauseous, however have woken up this morning with a very strange fluid filled blister on my hand, not sure if this is due to the Hydroxyurea???.

    MPN Voice is fantastic and the people on here are so supportive so use this as much as you can. It really helped me knowing and is the first place I go to for any information.

    Good luck with your appointment and if you are not happy ask for a second opinion. Take care and best wishes,

    Lorraine

  • There is a risk stratification they will consider. I am old but I know there are other treatment options for younger people and those concerned with fertility. This is a stressful peruod, please try not to freak out. Hard to resist the internet this is a good forum and I am sure younger members will reach out. Keep us updated.

  • Thank you all for your comments. You've really helped to put this into perspective and I think I feel ready to take whatever they grow at me. Thank you!

  • Hi there, I am 36 female and was diagnosed 10 yrs ago. Jak2 positive.

    My platelets so far have been steady at around 680-700 and I have only ever been on a low dose asprin.

    Can I ask how high your platelets are? Also did he run a bone marrow biopsy? I have never had one.

    Im not in denial about my condition and I am aware that the older I get the more my platelets will rise and cause me issues, but I cant let it rule my life either. I refuse to do that.

    I would seek another opinion about the chemo drug. Ask a lot of questions and if your platelets are not over 1000 i would reconsider taking that kinda drug. All the best!

  • If you are trying to conceive and/or pregnant they can give you interferon or peg-inteferon to bring your platelets down but how high are your platelets? I spoke to a high risk OB ( trying to conceive as well) and they recommended baby aspirin only (platelets 800, JAK2+). I'm set to see a reproductive endocrinologist to try Clomid but that doesn't have a side effect of thrombosis. I think IVF treatment does carry some risks for thrombosis so being JAK2+( we tend to clot more) they are concerned. Maybe ask about interferon? Good luck. I have a 2 yr old and desperately would love to give him a sibling. ❤

  • Hi all. Just wanted to update you following my second opinion. He doesn't agree that I should be on chemo. My platelets are between 700-850 and subject to the results of bone marrow biopsy which I'm having on Monday and some ultrasounds and bloods, he considers me low risk and can stay on clopidogrel for now. I feel relieved. When I received my diagnosis (in a letter) I was shell-shocked and didn't know what to think. Suddenly everything seems like it's ok. The haematologist told me yesterday that it might help to think of ET in the same way as diabetes or cholesterol. You just need to medicate and keep an eye on it. Thank you all for your helpful comments.

  • I had two successful pregnancies taking Pegasus, kids are 7 and 3. I've have ET JAK negative, CALR negative for 20 years now as I was diagnosed age 16. Hope you work through this and get what you want. Good luck 🙂

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