Hello all! So I am fairly recently diagnosed with ET, though it's been something we have been monitoring for some time. My dad was first diagnosed with it (hi dad, I know you are reading this cuz you are the one who told me about this group) when he was around my age. I'm 34 and I am JAK2 positive. I also have neurofibromatosis and some autoimmune conditions that are now well controlled. At this point we are just monitoring with daily aspirin to reduce the chances of thrombosis. My numbers are at 475 the last time I was checked, and my doctor doesn't want to do any of the chemo meds due to my age (childbearing age female, yay) and family history of them not being well tolerated.
So I have been lurking and reading and lurking some more. Still in the coming to grips stage of my journey.
That all being said, I'm gonna do a super short about me and then post this and go to bed. I live in eastern North Carolina, USA. I work at a car dealership and mostly enjoy what I do. I'm married and have an adorable 9 year old daughter who keeps me on my toes at all times. I also have a cat and a crazy dog. I like horses, reading, and acting.. I moonlight as a monster at a local haunted house attraction in the fall. That's about it. Thanks to all who read my novel and for all the information I have learned here!
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Fluffylittle
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Welcome Fluffylittle ! So glad you found this wonderfully supportive forum. 💛 I was recently diagnosed myself with ET JAK2 positive and finding this forum has been such a blessing. It has eased my worries immensely and provided me with so much knowledge and support that I would not have had otherwise. We are here for you - you’ve got this!
I am feeling much the same way. It seems like so many people have lived with this for quite some time, so my long term outlook is much better than I had expected.
Sorry to hear of your ET diagnosis, especially at a young age. I have a daughter roughly around your age. As you say, you are still in the ‘coming to grips stage,’ we have all been there, and totally understand. However, with a knowledgeable haematologist, preferably an MPN Specialist to carefully monitor your situation it shouldn’t impact your life too much. Out of all the MPNs ET for the majority, is the most benign.
My advice to you is educate yourself on your condition from reputable sites such as MPN Voice (UK) and Patient Power (USA). Presumably, with your Dad having ET you will have some former knowledge already. Also, if you need a ‘buddy’ Maz (forum administrator) can arrange this. A buddy is someone with the same MPN and around the same age as yourself who can support you. We will support you on this forum too.
It sounds like you have a happy family unit and you’re enjoying life, especially in the ‘fall’ 👹👻! Your nine year old daughter will definitely keep you on your toes - a lovely age!
I'm fortunate that there is a specialist a few hours away who is seeing me as part of a study, and actually does most of my visits via a telehealth service so I don't have to make that drive! Between them, this forum, and my dad I feel very supported and I'm learning a ton.
Hi and welcome to the forum. I was only 38 when diagnosed with Etjak2, now the big 50 so had this 12years. On Hydrea and clopidogrel for this condition and a host of other meds for other conditions. Hit a few hurdles along the way but still here living life to the full. Atb,tin.🤗
That's the difficult part, trying to find the right med combinations that aren't going to cause bad interactions. I take daily prednisone to keep my autoimmune stuff in check and that doesn't play well with some other meds. Thank you for the warm welcome!
If you are ever in the eastern NC are around Halloween time, let me know! It's a blast, we are one of the best haunted houses in the country. I'm very fortunate to have a good doc on my case.
Hi Fluffylittle and welcome to our forum, and glad that your dad suggested you have a look, I hope it helps you to read some of the posts, I can see that Mary has suggested you have a look at our website and also Patient Power website, hopefully they will help you as well to learn more about your ET. Thanks for sharing your story. Best wishes, Maz
Hello and welcome! I was diagnosed last December, so I’m fairly new also. My platelets are around 940,000, I’m 36 years old , triple Negative and on aspirin only. I have 3 kids - 9,7 and 4... welcome to the club 😝 sorry you have to be part of it, but so far (at least for me) it’s really not that bad.. could always be worse
Agreed! Some days I can’t tell if it’s the platelets or the kids making me so tired lol.. all of it combined can be a lot sometimes, but most of the time I forget I even have it. My anxiety is worse than the ET lol. When I first got diagnosed I couldn’t think about anything but progression and death. It was awful. I worried I wouldn’t be around for my kids and I scared myself to death. The initial shock is the worst. I guess at least you’ve been around it and understand it more than I did so hopefully that helps! Has your dad had many issues bc of it?
It's been a long journey for him. He was first diagnosed at my age but is now really old (his words, not mine) and is doing reasonably well. He is probably more knowledgeable than most doctors when it comes to this stuff. He actually posted right below you, lol.
Hunter5582 (aka Dad) here. I have been fortunate to have a relatively benign form of a MPN. What originally presented as ET, progressed to PV about 7 years ago. My old doc missed the progression so kept treating me for ET. It was not until last year that this was discovered, right before I had to go for a brain surgery. But no-harm-no-foul. There were no problems as a result.
I was diagnosed over 30 years ago. I have never had any thrombosis, no DVTs, TIAs etc. The only symptoms other than lab values have been mild splenomegaly and stage 1 hypertension due to hyperviscosity of the blood. Once I started the phlebotomies my resting BP returned to the normal range. I have actually been more inclined towards hemorrhage (excessive bleeding/bruising) when on aspirin. My von Willebrand factors tens to drop below norm when my platelet levels get higher, but no to the point of Acquired von Willebrand Disease.
My daughter and I both have Neurofibromatosis Type 1, which complicates things. The JAK2 mutation and the NF1 mutation both cause problems in the body's kinase systems (JAK-STAT and RAS-MAPK pathways). The two kinase systems interact, but the implications of having both disorders is not well understood.
Despite all of that, I am in relatively good shape for an old guy. Compared to what many face with a MPN, I have had it pretty easy. My treatment protocol is not what most with PV age 64 would follow (phlebotomy-only - no chemo - no aspirin) but is seems to be working for me.
That is pretty amazing. I always love to hear long term stories from people diagnosed. Being “young” still always made a bit worried for the future bc you just don’t see a lot of people in their 30s diagnosed and most studies are done on people isn’t their 60s and beyond. Always good to hear a real life positive story! I am triple negative, and even though my platelets are just shy of a million, I really have no issues. It was caught by accident with normal bloodwork. I thought I might be anemic bc I was tired. No real issues though. Hopefully it continues this way for me for a long, long time! I appreciate your information and sharing your story!
It is intriguing how differently MPNs can present, with some of us mildly affected and others with far more troublesome issues. Platelet levels alone do not seem to predict what symptoms you may have. Some people with platelets up in the 800s or above are actually more at risk for hemorrhage than thrombosis (based on newer research). Hopefully you have received a von Willebrand panel as part of your overall diagnostic blood work.
Fatigue seems to be one of the most common constitutional symptoms with MPNs. Sorry to hear you are feeling that. I never had an issue with it until last year after completing rounds of therapeutic phlebotomies that caused significant iron-deficiency. It is not clear what is the anemia vs what is progression of the MPN. Fortunately what I experience is pretty mild and I can just soldier on and rest if I need to.
There is a good bit of research underway on MPNs. I expect that "triple-negative" actually means "we don't understand it yet." Hopefully we will come to understand it in the near future. Meanwhile, we just all cope the best we can and enjoy the life we have.
Glad you found the forum dear daughter. There is lots of great information and support here. Keep checking in and let the friends you will develop know how you are doing.
I will be honest, most of what he has told me is super technical and goes way over my head but I'm trying to absorb it all. He has done a very good job educating me and helping me advocate for myself.
I mostly know how much I do not know. I think I need to go back to graduate school to really understand the complexity of what we are all dealing with.
Welcome! I am recently diagnosed PV JAK2+, aspirin, eliquis, and pegasys for treatment. Must be helpful having someone so close to you that knows what you are dealing with. For me this forum has been a real lifeline. People with great knowledge and attitudes - and you seem to already be one of them!
Hello. I am sure you will be well supported by your dad. I’ve found his contributions v useful. Take care and know that for many this is something you can live with and have a normal life expectancy. Jacquie x
Welcome Fluffylittle to the forum. So glad your Dad introduced you. I too follow his posts and try to digest the information he has, which is amazing. Must admit I'm a bit at a loss to understand some of it but usually get the drift. I have ET JAK2+ also, diagnosed in mid-2018. Keep in touch. Fran x
Your dad is a big contributor to this site and you’re lucky to have that personal support system. I have learned a lot from him. There are many kind and intelligent people on the site and we are here for you, as well.
I was diagnosed at age 52 with ET Jak2 t positive and I guess I’m “old “ too because I’m the same age as your father LOL
Mine morphed into MF last year but I have a brilliant mpn specialist and I’m very positive about my future.
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