I m a bit underwhelmed with my specialist as he is very vague about everything. Gave me a script for aspirin 100mg once a day. Suggested I do a blood test every 3 months and see him every 6 months. Some markers from BMB have not come back but he said he is not expecting to find anything surprising or additional . I have been referred to have a hysterectomy, waiting lists are long and he did mention that surgeons won’t be very keen to do it with my high platelets. He gave me a choice, start on HU now so my platelets have decreased by the time I get a surgery date or wait until I have an idea when my surgery will take place and start HU then risking a delay in surgery. I just don’t even know if I want the surgery anymore. Yes I have an enlarged uterus with fibroids and when I do bleed it seems endless and super heavy but at some stage I will go into menopause and it will stop. I m actually really uneasy having a major surgery with my platelets and yet I also don’t want to start HU just yet either as I am pretty much symptom free apart from the odd tingle in toes, funny enough…this has decreased enormously by taking vitamin B.
Sorry I am waffling on here but I just don’t have peace starting HU, I don’t have peace having an op just yet either. I just don’t know yet what the best course of action is in all this. Risk versus benefit etc.
I asked him about progression and he said around 5% chance of progression to MF…so very small but it all depends . It’s all very airy fairy. So I shall take some time out, take the aspirin, look after myself and literally see what happens with gynocology.
Did you guys find you needed a little time as well to get a clearer picture of which way you should go?
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Manaaki
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Hi Manaaki. I'm sorry you haven't had more clarity - v stressful.
Yes it took me, and still is taking me, time to figure it all out, I'm different in having Jak2 positive high risk PV but similar in having the same dilemmas re. balancing various things. It seems very much a balancing act.
Earlier you had hoped your case was secondary polycythaemia. I don't want to raise false hope - after Jak2 was confirmed I mentioned to my (general) Haematologist that I had hoped mine could have been this. He said that in his career he hadn't really encountered this (he is a senior consultant who has worked for a long time). Has it been fully ruled out for you given you are triple negative? If it were an extremely rare case of it then it may strengthen the argument for surgery. (guess your BMB and remaining genetic tests may help / have helped to answer what is driving your raised platelets that but don't know enough about that side of things to be helpful to you).
Options will be limited by the position and size of the fibroids but have you been talked through other solutions than hysterectomy? Mirena is much less invasive and reversible, but would still potentially give you a chance of finding out the affect of reduced / absent bleeding on your platelet counts (may take a few months to settle). Embolization was also mentioned to me as a possibility (but not discussed with the MPN side of things).
In my case heavy bleeds may have been hiding PV in my counts for a few years - I was usually iron deficient, which brings it's own problems but hard to say which symptoms were due to that and what was PV. Mirena has helped, but I've recently had a rise in counts despite a few months of Inteferon. Haematology was clear that they would rather I have controlled venesection than unpredictable loss though.
Did the Haematologist ok you to work again? I remember that was complicated as it involves regular flying.
As I say we are in a slightly different situation but I may have asked questions of the Haematologist, Gynaecologist and MPN Specialist (who I've met once) that are also your questions - please feel free to ask here or via message.
Hello! 💐 Thank you for you reply! Yes I am back flying, have been for a while. It was a lil bit scary initially but I seem to be absolutely fine.
The hysterectomy is not a must have as I understand it. I have yet to have a consultation with a gynocologist/ surgeon about it. Again there are two sides. Some people say it is the way forward, others say it is not necessary as at some stage I will be I menopause and bleeding should cease. I only bleed once or twice a year and generally don’t have bad symptoms apart from bloating and I get self conscious over my belly not a good look on a flight attendant 😂 it’s a weird industry with regards to looking good. So aging can be confronting in that line of work. I have been looking for other jobs as I am not really enjoying flying all that much anymore and I am mindful of the toll it has taken on my health.
There is something I also want to mention. My out of control bleeding started about 3 years ago after I took the Novavax vaccination. I can’t help but think there could be a link between the vaccination, my heavy bleeding and now the ET. My bloods were normal 5 years ago. I know this is a sensitive subject and I will never know but still I feel flying has taken a huge toll on my health. I also have diverticulitis now, direct result from constipation again from frantic schedules and inconsistent times of rest, eating etc.
I think it’s natural to wonder how we got here and I’ve definitely wondered about triggers (my theories have included a previous blood transfusion, years of low ferritin, swimming in the river behind a tannery as a child - who knows what chemicals were in that water?!). In the end I decided it wasn’t doing me much good to think about that side of thing; I’ll never know and it doesn’t alter my future (although it would be obviously be lovely to help others avoid MPNs). The Specialist was also clear that it is usually just random bad luck behind my Jak2 mutation.
Hope you get some peace of mind and work out a plan.
ET appears spontaneously in most affected people, in some few people it can be inherited, and it is normal to try to find the cause of it, but the sporadic mutations that cause it often preceed the illness by entire decades (some mutations are acquired soon after birth or during childhood), so a vaccine several years ago cannot be the cause an illness that is already on its way to manifest. I know you might be thinking this as your ET is triple negative, but if you read through scientific literature, triple negative ET was found to be caused by non-canonical mutations and by non-driver mutations, sometimes by mutations that would cause other cancers, but in this case caused the ET, which means that the mutations are not often included in the tests, and some are yet to be discovered. ashpublications.org/bloodad...
I have such a non-canonical mutation (germline in my case), often excluded from regular tests. My luck was that the hospital testing me does research and they looked at a broader range of mutations.
Regarding uncontrolled bleeding, I have been having my ET for decades while menstruating, and I also have uterine fibroids. Serious bleeding is an on and off event, as fibroids themselves can generate that, based on their position and other factors. ET was the cause of one of these fibroids bleeding a lot on one occasion, as it caused small blood clots in the blood vessels supplying one of these fibroids that were in the wall of my uterus. But they can also bleed by themselves, irrespective of having ET or not.
With menopause, the fibroids are known to reduce in size, and given that surgery with MPNs is not without its risks, you can evaluate what works best for you.
Thank you so much for this informative reply! Yes that is what I am thinking about too …that fibroids do decrease in size during menopause. I am also reading literature that states that hysterectomy is not always the only way to go as it comes with many other risks and issues afterwards in the abdominal cavity ie displacement of bladder etc and of course there’s the risk due to ET. I appreciate your reply and attached information.
You are absolutely right! All that matters is for us to manage it in the best possible risk versus benefit way 😊and we can do that! Once again I appreciate your comments so much! Take care and let’s stay in touch!
hi Manaaki, I am also triple negative ET but I am slightly older than you ( early 50s) . I had similar problems when I was in my 30s & 40s and the marina coil was amazing . It took 6 months to settle but then I never had any more problems and I even used to forget that I had it. It is an easier option than an operation so maybe you could try it first. It is interesting that we both had the same symptoms. I would only bleed a couple of times a year and it would get really heavy. I also had tingling in my legs ( similar to restless leg syndrome) I noticed that I get it when I am tired or when flying. It is now so painful during flying that I try to avoid flying ( and I love flying- I used to have a pilot license) I am still only on aspirin ( platelet count 700 to 800) . Hope that helps and take care!
Oddly enough I was never offered the Morena coil. I read that there is a cut off age and me being 55 almost 56 has out me over the indicated age bracket . They seem to treat my case as post menopausal bleeding as it happens only once or twice a year. Strictly speaking I am not in menopause as zi have not made it over the 1 year mark for absence of bleeding. I might ask when I get to see a Gyno! Thanks for that info! Hope you are doing well! 😊
My word is to wait until you have peace about the surgery and starting on hydroxurea(hope that ia the correct spelling). I just had corotid artery surgery with my platelets at one million fifty eight thousand,sky high to say the least and I have been on hydroxa for months. Did not for me lower them but I had peace about the surgery. My opinion is wait for the peace to come. Greetings from Lower Alabama and I don't know if you are able to change Doctors there but I would find one that explains things and is willing to help you fight this along side of you.
Thanks for your response. My corotid artery surgery went well. Still a little bit dizzy at times but much better. I have a appointment with my oncologist Wed. of next week and I will see if my platelets have come down any. As far as hydroxurea goes ,the jury is still out on this drug. Sometimes it makes me sick or fatiqued ,sometimes not. I still take one 81 mg. asprin along with the hydroxurea .Instead of going down my platelets have been going up. It might have something to do with a alert on my last blood test that has me going to a rheumatologist on the 17th. I will wait and see. Hope all is well with you. Prayers and greetings from LA(lower Alabama)lol
Awwwww you have a lot going on and I sincerely wish you a full recovery and that your bloods balance out nicely again. It’s quite the journey ❤️ Sending you my best wishes from the South Island New Zealand 🇳🇿
Yes I think it is a common feeling to be unsettled about taking medication and which one. I am in the same boat at the moment as had to come off the Pegasys and I think I will only be offered hydroxycarbamide. I just feel I need time to absorb it all first. I hope you get your problem resolved. Maybe it helps to know a lot of us go through the ‘I don’t know what to do’ stage before actually making a decision. You are not alone and together we are stronger as so much help on this site
It helps so much to know that many of us go through the same thing. I tend to become frustrated with myself when I am unable to decide which way to proceed! I end up feeling isolated and it feels like I am looking at my life through a glass wall, not actually part of it just like an observer. It has occurred to me that this kind of disassociation must be a response to the diagnosis and all the info that needs to be digested with it! Thank you for your kind words of encouragement!
Give it a little time to sink in. I too felt quite isolated when I was first diagnosed in 2019. I didn’t explain in detail to family about the diagnosis. Left bits out. It does help to have a shoulder to lean on as I have found out more recently. I think we dissociate ourselves as a form of protection. We are all here to help so reach out any time x
Hi there! No I don’t know. Saw Haematologist yesterday and he just said BMB confirmed ET, triple negative but he did say not all the genetic results from BMB were back and that he wasn’t expecting the diagnosis to change. I am thinking I will want to find out the exact results from BMB and will request this in another month or so. Would like to look at it and research myself. What is the significance of ASXL1? Do you know?
I am not sure which exact testing is taking place. He did say not all results are in as some of them take a long time to come through. So perhaps it is the next generation sequencing that is still outstanding? I am sorry to hear about your ASXL1 at 54%…what are the implications of it?
I m sorry to hear that. When I asked my haematologist about prognosis etc he said It is all just statistics and every individual is different , therefor he doesn’t like to get into it .
While it is important to follow a regime, listen to your Dr's you still must live life.I know this, the more you focus on a thing then larger it becomes.
Diagnosis is a part of your life, prognosis is there so you know which way your body is going.
It, the disease, no matter how fatigued or "not well" you are, the 5 or 10 mins that you act against the disease today will get you 10 to 20 mins more activity with each push back against the disease will expand your can do boundaries.
On the days or hour you can not or unable to do a thing doesn't mean the end of the world. It is a rest day, or nap day(I hate naps).
I have faith that Jesus is my go to physician. I also understand that His ways are above my way. So there is a comfort in that knowing. I have a choice as does everyone else who breathes. I can either focus on the bad hand dealt in life and that is all I see, or liventhis moment without looking at the disease that I have no control over except with meds slowing it down. But the disease does not define me.
Hi there, how high are your platelets?I am also ET triple negative. 7yrs ago I had my ovaries and fallopian tubes removed. Not as big a surgery as a full hysterectomy granted but I got through it okay.
My surgeon prescribed an injectable anti-coagulant which I used once daily for 3 weeks after surgery. I think it was called Clexane? I also continued to take my 100mg aspirin daily.
If you explain your situation to your surgeon he/she will recommend strategies to reduce blood clot risks.
I took my aspirin to the hospital with me and my surgeon was furious with the nurse who took them off me. Nurse obviously didn't realise why I was taking the aspirin. Most patients are advised to stop aspirin prior to surgery but those of us with ET don't fall into that category.
I also had one of those ball tube things you breathe into to reduce risk of blood clots in the lungs.
I took HU for 7 months and my platelets didn't decrease at all. All I got for my trouble was peripheral neuropathy, mouth ulcers and thinning hair. So no guarantee HU will even reduce your platelets enough for surgery.
Be guided by your surgeon's advice. Ask about Clexane and whether that will be helpful in your situation.
Hi! Thanks for your comment! My platelets are usually anywhere between 1080-1130. Interesting to hear about the HU! I had an instant no in my head when he suggested it. Tbh I don’t even want to take the aspirin and I have no idea why I am reacting like this. Maybe I just need time and possibly talk to another specialist as my one seems really disinterested and doesn’t really give any details. IHave trust issues with him 😂
Hi, just to say that I had a hysterectomy in 2022- with pre-operation blood tests etc. My platelets were 855 at the time and nobody reported this and they went up after surgery too and still not picked up! I recovered from the hysterectomy very well in spite of it all but was diagnosed with ET in June 2023 and went onto Hydroxycarbamide as I had a TIA in April 2023. My diagnosis was made after a referral by my GP for routine blood tests in March 2023. I was 62 at the time of the operation and been through menopause but if you feel you can get by without it I would follow your instincts. Best wishes.
Thank you so much for sharing this with me! I am just so undecided about the op. I guess it all depends if I continue to experience heavy bleeding. Currently this only happens twice a year so there’s hope it may stop of its own accord! Great to hear though that everything went well for you regardless! All the best!
When I had my surgery my platelets were around 600 so not overly high.
My haematologist is a bit casual as well but in Australia's public health system we get who we get. No MPN specialists in Tasmania just regular haematologists.
Like you I have 3 monthly bloods and 6 monthly haematologist appointments.
I stopped taking the HU. Didn't see the point in continuing with a medication that wasn't working and had such awful side effects for me.
Just take aspirin for now and am doing just fine.
Your platelets though are substantially higher than mine so the surgical risk could be greater.
If you're approaching menopause maybe best to leave it and let nature take care of it.
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How the Hydroxy treatment goes in time?
Jak2+ Thrombocytosis
Interesting appointment today.
How long can you take HU?? 
ET and surgery
