Jak2

Other cancers

Are you affected by a cancer type that we don't have a group for? A group for anyone affected by a rarer cancer type to get together, ask questions, share experiences and support each other.

Jak2

No. of entries: 4 | Posted on 30 Jan 2013 12:55
  • Can anyone help me.  I'm 30 years old and JAK2 positvie ( Janus kinase 2 mutation in my blood) 

    This is due to a thrombocythaemia and means that I am on hydroxycarbamide daily and have been for 6 years now. 

    My question is this;

    Is there anyone who has anything simular on this state?  I want to start a family but I am aware that I am much more prone to misscarring. 

    Is anyone able to shed any light on this for me?

    I would be deeply thankful to hear from anyone who is/has been through this.

    Thank you very much

    xx

     

     

  • Hi kimkim82,

    I have just joined and read your thread. I know it was over a year ago, but if you still require information regarding pregnancy and Essential Thrombocythaemia, I would be more than happy to discuss my experiences. Kind regards xx

  • Hi yorkie313!!

    Thank you for replying. Id be very grateful for any experience/advice you could give me! 

    Thank you so much

    Kim xx

  • It would be my pleasure :) I was diagnosed with ET 17 years ago, aged 17. In the past, I have been on Hydroxyurea, Anegrelide and Interferon. Since being diagnosed, I went on to have 3 children, now aged 14, 11 and 10. My haem and gynae drs had never dealt with an ET mum to be before and admitted that they didn't have a clue what to do with me...great comfort that was! Luckily, just before discovering I was pregnant, I'd stopped the Hydroxyurea (I didn't tell my haem), but it was a good job I had. If you are actively trying to conceive, stop the Hydroxy straight away and discuss meds with your haem. The only safe treatment for pregnant ET women is Interferon. Hydroxy can cause foetal defects. I was started on Interferon straight away, and on too of the baby aspirin I was already taking I had daily injections of a blood thinner (Fragmin). In any pregnancy, first trimester miscarriage is common...the stats increase steeply with ET due to the clotting issues so it's also advisable to discuss the blood thinners before conception to minimise this risk. I carried on happily throughout each pregnancy, but I did suffer bad with migraines and dizzy spells and was diagnosed with TIA's. I don't think pregnancy brought these on though. I was given every horror story going, like the baby wouldn't grow, I'd deliver early, my life could be at risk blah blah. I not only went full term, I had to be induced! They did induce me a week early with my first to be on the safe side. He was fully grown, perfectly developed and there would be no risk in delivering early. I did have a very large bleed when I'd delivered, but that was the least of my worries given how id panicked every day of my pregnancy! I stayed on all treatment post natally, but only had to have the Fragmin for 6 weeks after. With my second, I had to have an emergency c section. They were worried about cutting me for obvious reasons, but I actually bled a lot less than with a normal delivery :) Baby was fine :) I only had the section as baby didn't like the drugs they gave me to induce labour...it was nothing to do with the ET. I then got pregnant again 3-4 weeks later (oops!) and had a planned section as it seemed the sensible thing to do bleeding wise. The drs weren't happy about how quick I conceived, as it can take 18 months to heal after a section but I carried on regardless. I was told I'd probably never have kids, so after more than proving them wrong and having 3 in 3 years, I quit while I was ahead :) Because back them there wasn't much info for drs about people like us, I was advised not to continue with pregnancy. It's the best advice I've ever ignored ;) It can be done, don't ever give up hope. I've spoke to lots more women recently who have also had children and those on a similar treatment plan have also had nice pregnancies, uncomplicated deliveries and completely healthy babies. I wish that I had prior knowledge back then as I wasn't warned about the risks of Hydroxy and pregnancy, or the benefits of starting other treatments early. I don't know your current situation, but I wish you all the best and if you ever need advice or someone to chat/rant to, just drop me a message :) I hope my experiences can help other ladies in our situation, because it can be scary delving into the unknown! I went in blind and constantly worried all the way through with my first, but the second time was fab, then I went back to panicking again with the third lol. You know where I am, I'm not a professional but after 17 years I know more than most haems who are not MPN specialists. If I can offer advice for you to ask your consultant about, I'll help all I can xxx
Page 1 of 1