Hi everyone , I’m new, I just got diagnosed ET after over 1 year symptoms and high platelets what my gp what continuously ignoring. I’m still waiting to doing bone marrow biopsy and I will hope everything will be fine.
Since got JAK2 positive was very stressful time to believe at 32 years old to feel to die in short time , but now I feel much better and with lot of hope and hoping bone marrow will give more good news rather then bad news.
I still don’t know which medication I will get, but me and my soon wife we was going to have a baby during this year or next year.
Anyone have any experience about ET , medication and having a baby?
Any advice ?
I really thank to found this group is really helpful especially for my feeling.
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Inverter
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Hi there Inverter, welcome to the group. Can’t say anything about pregnancy! But I can so remember being told I was JAK 2 positive my daughter was in school at the time, and I was so scared I wouldn’t see her through her school years. If ever I prayed it was then. I wanted to see her through school. She finished her regular schooling, and then I was hoping I’d see her through university, she did 5 years plus postgrad. She got a job, gave me grandkids and now has her own business. What I am trying to say is I came from the dark place of possible early death, to absolute positivity. I started on aspirin, hydroxyurea and venesections. That was back in 2007. I now am on Ruxolitinib and it’s been my lifesaver, seriously. Try not to look on the bad side, there’s a lot of really good research etc being done and good luck with a possible future pregnancy, it’s all so worth it. Janice
You are about the same age I was when I was diagnosed with ET. That was 30 years ago. Now age 66, i have lived a rich life and continue to do so despite having the ET progress to PV about 8 years ago. I raised two kids and now am blessed to be a grandfather. You should plan to do the same. BTW - being a grandparent is great!
Regarding medications, at age 32 with ET you will likely be on aspirin-only. Some docs do not even prescribe the aspirin for people with ET with certain profiles. Providing you are in a low-risk category, you will not be prescribed cytoreductive medications. If you are in a higher risk group, than there are two primary cytoreductive medications, hydroxyurea or one of the pegylated interferons.
Hydroxyurea (HU)(AKA hydroxycarbamide) is contraindicated for someone your age for a number of reasons. It is not recommended for people with MPNs of childbearing years. HU is a teratogen and for males can induce hypogonadism (which includes oligospermia/azoospermia) . The hypogonadism is usually, but not always, reversible. There are also some additional risks associated with long-term use of HU. For these reasons, HU would likely not be prescribed even if you did for some reason need cytoreduction.
If you were to need cytoreduction at age 32, then it is much more likely that you would be prescribed Pegasys or Besremi. These interferons are the other first-line treatment option for ET. There are also other meds like anagrelide and ruxolitinib that are used with ET. I would suggest you not jump down this rabbit hole just yet. You are not going to be prescribed cytoreduction at this point in time unless you are in a high-risk group (e.g. prior thrombosis, cardio-vascular disease, etc.). You will have plenty of time to sort this out once you know what your exact status is.
It is very important at the outset to consult with a MPN Specialist. Most hematologists have little experience with MPNs due to how rare they are. It is important to cosult with a provider who has the KSAs to provide optimal MPN care. here is a list just incase you need it. mpnforum.com/list-hem./
Hi & a huge welcome to the group. I think , as Hunter has said you should be ok but make sure you discuss your concerns with an MPN specialist. I’m no expert but pretty sure you’ll be ok to have a family all being well. Having an MPN is not such a massive deal as long as it’s monitored & you look after yourself diet wise, drink lots of water & try & do some exercise.
Do update us when you’ve had your BMB & if you have any concerns or qs at any time then this is the place to ask.
In the meantime welcome again & all the best to you.
Hydroxycarbamide not recommended for anyone starting a family. Have a good discussion with your haematologist. Pegasys and besremi worth discussing. Our condition can be managed and isn’t as bad as it sounds. Let us know how you get on and good luck
Thank you very much to everyone , my worry was much about if medication could ruin the opportunity to have a child or healthy child and for what I see I have to stay away from HU.
In only few days I already learned lot and reading about so many positive story what add lot of hope of living as normal.
My haematologist said straight away the same things , but honestly when I hear from doctors I don’t really trust much, I have been in doctors hands in the past where they ignored , underestimate , didn’t care at all and said whatever was better for them , that’s why I trust more hearing from real life experience from real people, because a doctor for me is always 50/50 if this time will be a good one or if I will be just a number for him.
I’m waiting as well for another appointment with another haematologist and I hope everything will be fine.
In last 2 weeks I change diet and did exercise and my symptoms are almost disappeared, my blood wasn’t bad only high platelet 542, and I wasn’t doing any exercises and eating almost no fruit and vegetable at all.
In less then 2 weeks with aspirin and eat well and exercise I ended up to almost disappeared the numbness , I believe my platelet currently could be around 400, my big worry is the haematologist said I have ET in base of blood test , by the way if I fixed my symptoms in only 2 weeks with only aspiring / diet and exercise I’m worry if the JAK2 could be for some other kind of cancer ?
Basically my symptoms was fatigue , short breath and easy to get high heart beat compare to before , I lose also weight but hard to estimate because I been all my life light, at 16 I was only 40/44 kg and then I grow till max 54.5 kg but on average I have been always around 50-52 and currently I’m 49 kg.
While my numbness is basically disappeared, what surely was connected to thick blood, the other symptoms are still there and my worry is if the problem is not generated in the bone marrow ( high platelet was only because of bad eating and no exercise) and the other symptoms are connected to some other cancer.
What’s the standard medical check from haematologist?
Because till now my one based his diagnosis of ET on my gp blood test and symptoms and we still waiting for bone marrow biopsy.
Till now I didn’t get any scan and I was expecting when is a risk of cancer , to get more investigation rather then just approssimative guessing, because in this kind of thing if wrong diagnosis, time is very precious , time could make the difference.
Any of you did get any specific blood test or ct, mri to investigate or excluding any other possible cancer ?
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