Newly diagnosed with ET jak2+ and just looking f... - MPN Voice

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Newly diagnosed with ET jak2+ and just looking for reassurance

I'm a 38 year old female from Auckland, New Zealand. A couple of months ago I went to the Dr thinking I had low iron to be told my platlets were concerning (729) and he was referring my results to a haemotoligist.

The haemotoligist suspected ET and sent me for a Jak2/calr test and it came back positive for jak2. I haven't actually spoken to anyone except the nurse who advised me of the blood results. The haemotoligist letter says he doesn't need to see me till I'm over 1000. So all I've had to guide me through this is Google which has offered up a mixed bag of info.

My symptoms are fatigue, occasional dizziness and regular silent migraines- about 2 per month (aura but no headache - just fuzzy head).

I guess from here on - I just keep going for blood tests? Is there anything else I can do - anyone had any luck bringing their platlets down naturally?

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Hi Kris, welcome to our forum. The symptoms you are experiencing are all part of the MPN, lots of us get them in varying degrees of severity and length of time, I have ET myself and get them though they are much better controlled by being on Hydroxycarbamide. Have a look at our website mpnvoice.org.uk you will find lots of useful information on there about ET, symptoms, ways to cope etc, we also have lots of videos of patients talking about their MPN, and haematologists, there are also lots of real stories you can read, and we also have our information booklets on the website you can download and print, or I can post them to you, we post information across the world. If you want anything please email me at maz.cd@mpnvoice.org.uk

I would suggest that you ask to see your haematologist and discuss this with him, explain that you would like to know more about the ET and your prognosis etc.

Best wishes, Maz

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We have a specialist nurse who can explains everything to you, why not ask your haematologist if your hospital has one. Ours can be reached at any time so we're very lucky! My haematologist sent me to her and said the referral should have been made years ago.

I see two haemo now, my old one retired, and it was only one year ago that I was told I have cancer, by the new Drs.

Hope you find some answers xx

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HI Kris

You will be feeling like most of us who get diagnosed with ET or PV , somewhat overwhelmed and confused but be aware you have joined a small but very special group of people on this forum who will be only to happy to help and offer advice and information. I agree with Maz you should be asking for a referral to your haematologist . There's alot to be take on board just now and you will be hearing and (soon) getting used to terms such as hamatacrit (blood thickness) and platelet levels etc.

Right now I would read some of the posts on here from other pepes who have been newly diagnosed and you will learn alot from just reading all the info and advice that has been given .. In the meantime it is important to keep well hydrated, rest when you need to and keep as active as you are able. It is also useful to keep a copy of your blood results for your own records- I'm sure the nurse will be happy to print them off for you .

I was diagnosed last October so am still a relative newbie but there are many people on our site who have had ET and PV for many years and are leading full and happy lives. When you see the Haematologist have your questions written down and don't be afraid to write down the answers as sometimes new words and info can easily be forgotten once you've left the doctors office.

Also it may be useful to write down any symptoms you have such as headaches , dizziness, tingling in your fingers, brain fog, tiredness etc when you see the Haematologist. When you see him/her do not be afraid to ask him/her to fully explain your condition, your blood results and the treatment plan they have decided upon and why . The more you understand the easier It is to manage and come to terms with your diagnosis.

I hope you soon get your appointment and keep well too

Kindest regards

Dianne (North Yorkshire , UK)

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Thanks ladies. I already feel better connecting with people with ET. No one in my real life has any idea what it is so it's been hard to talk with anyone else about my concerns.

I'm inclined to avoid the drugs for as long as possible if they are not yet recommended but at the same time - I certainly want to avoid a throbotic event.... is there any real warning signs? Obviously for me - everytime I get a migraine now I'm weary and my haemotoligist isn't aware I get them... The only symptom he was told about was at the time I went to the drs, i was experiencing severe heart arythmias - hours of them at a time where I could literally see my chest jolting but they stopped after a week or so and as far as I can see from googling- they appear to be unrelated? I get infrequent bouts of them - maybe every couple of years...

Burning pain or numbness in hands and feet - I mainly only experience on long haul flights. I would wake up and my hands and feet would be completely numb and as the feeling came back (I would have to vigorously move them) they would be burning. I didn't know about ET then though.

I will try and see if I can get an appointment with the haemotoligist - I'm not even sure how that will work under our health system - I'll have to go back to my doctors and start there.

Thanks again ladies - sorry this is very much about me me me initially! I hope you are all managing your own conditions well and keeping healthy :)

Kristy

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Hi Kristy,

Very sorry to hear that you have ET, it will be a very "up and down" time for you emotionally at the moment as you try to take it all in. I am also in New Zealand, just North of Dunedin, and there seem to be 2 other people on this forum from NZ too.

I also have ET and got my diagnosis in February - March this year after first seeing my GP last November with an odd collection of symptoms that included.. silent migraines, giddy spells, fatigue, and probably circulation trouble in my legs. At that time my platelet count turned out to be mid 600s, and the lab that did the tests raised the alarm bells and recommended extra tests be done. The JAC2 and other one happened in December-January, and the results took ages as the tests went through to a lab in Wellington because they don't do them in Dunedin, and one of the tests is only done once a month in Wellington, because it is rather uncommon!

My tests came back negative, so I had a bone marrow biopsy that confirmed ET. I have had monthly blood tests from March and was put on daily aspirin to help prevent blood clots. I found that the silent migraines, headaches, and giddy spells mostly went away, and I even slept a bit better at night. My platelets have continued to grow in number, a month ago they were 976, and I suspect they will be over the 1000 now. I am having a lot of trouble with fatigue, and am finding productive work very difficult now. My haematologist said that I would be put on Hydroxyurea to bring platelets down when I reach 60 (I'm 58), or if the platelet count hits 1500.

I see my haematologist every 3 - 4 months, and see her again on the 28th of June. I sent her a letter a week or so after I saw her in March to alert her to what my symptoms had been in November when I originally saw my GP as I realised that we hadn't discussed them when she saw me. My consultation with the Haematologist gave me the impression that people with ET can often be symptom free, live normal lives, and have very high platelet counts. Whilst I did like the haematologist it seemed she was mostly interested in risk factors and family history rather than the symptoms I had at the time! I was given a glossy pamphlet to take home, which does have some useful information in it, but I soon became quite worried because I definitely had very troubling symptoms and wondered why that was. I didn't seem to be like the smiling athletic types that were able to work and play long hours!

This forum has been very helpful, I was able to see that, whilst there are many symptoms in common (such as fatigue), ET affects everyone differently, and some people have symptoms with platelets not far above the normal range. Someone wrote a reply to one of my questions and explained that our symptoms are not just a question of the quantity of platelets we have, but their quality. This makes a great deal of sense to me, and understanding it helped me to feel a bit more at peace with myself and worry less about how my ET compared with others.

I would encourage you to ask questions and voice any concerns you have as I know you will feel less alone and more able to cope.

I am a bit surprised that you haven't been put on daily aspirin, and I would ask your GP or haematologist why that has not happened.

2 very practical things that the haematologist or GP did not tell me, but I learned from this forum were, that is important is to drink lots of water every day. Some on this forum say 2 - 3 litres is helpful. Also, a daily walk.... even if you don't feel well enough for it... can be a big help too.

Kind Thoughts from the wintry South of the South Island, I do hope you are able to have some luck with our wobbly public health system and find someone knowledgeable deal with. It is difficult coming to terms with all this, but do take heart that you are not alone!

Peter

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Thanks Peter!

The haemotoligist letter basically says that my age is why he wouldn't recommend aspirin yet but for my doc to refer me if my platlets get over 1000. I'm going to try and push my doc to refer me for a haemotoligist appointment now though cos I do want to discuss my symptoms... I kinda feel like it's a bit bizarre that I get diagnosed with this through following up my genetic blood test with a nurse and she says 'I have no idea what this means but you tested positive for jak2'. I've not heard a thing from my doc so I've been processing this through Google.

To be honest though - I think given the rarity of this condition - we probably have more to learn off each other. I have looked up a specialist in Auckland and if my bloods get worse and I am struggling to make sense - I'll book in to see her (Hilary Blakelock).

Thanks for the advice re water and walks. I'm very interested in managing this without drugs for as long as possible but I will do what I need to do to limit the risk of thrombosis...

Hope your keeping warm and healthy!

Kristy

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Hi kris nz,

I would just like to welcome you to the forum. It is a great means of support, especially to the newly diagnosed.

You have been given some great advice by the wonderful people on here. There's nothing I can add, other than reiterate Peter's comment on aspirin. Aspirin is important in making our 'sticky platelets' less likely to aggregate. If you haven't been prescribed aspirin discuss this with your GP, it is very likely it will alleviate a lot of your symptoms.

Mary x

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Thanks Mary. I did go and purchase a pack a Cartia after my diagnosis - is it something I can take sporadically? I.e when I get a migraine of feel symptoms? Or do I need to be on it daily?

I've read it's not great for you long term and being 38 - that could be quite some time if I start daily now...

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Sorry- Cartia is a brand of low dose coated aspirin in New Zealand that they sell in supermarkets

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Hi Kristy,

Good to hear back from you. The low dose aspirin is taken daily, not just when there are symptoms. I don't know about the long-term affects of aspirin, or if they are not needed if you are younger so you would be best to check with a doctor about that, but I find them very helpful, and the way that the foggy head, silent migraines and so on went away within the first 3 or days of starting the aspirin did confirm for me that the blood had been too sticky!

The exercise thing is interesting too, in that I am often very out of breath and quite unwell feeling for the first kilometre or so of a walk, but generally find a steady improvement after that. I try for a 2 - 3 km walk nearly every day.

It would be great if you could see a specialist and have a good talk with them, I think it very bad that you have been diagnosed and then left with so little support. I see that Hilary Blakelock is involved in an international MPN quality of life research group, so it could well be worth seeing her.

Peter

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Hi Kris, I'm from Palmerston North, New Zealand. Welcome to this amazing site 🤗 I have many of the symptoms listed here and have ET JAK2+. How often is your Doctor going to recommend blood tests? I think you should stick to your guns and see the specialist as you should be directly under their care and as you say you need clarification. The specialist you mentioned would be a bonus as many of the haematologist's in New Zealand still have no idea about our condition.

Google up aspirin alternatives. There are a few scientific papers on pycnogenol and policosanol. Aspirin is derived from pycnogenol but has been synthetically altered etc hence the side affects. These will not lower platelets but will make them less Sticky. Also your high quality fish oils ( I get mine from Ben Warren - bepure.com, NZ sourced) and freshly cut and pressed garlic cloves. You may need a mixture of some of these but you also need to be aware of making your blood too thin. Do some research and choose an effective amount that would equal a baby aspirin.

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Hi Fee- do you take the pycnogenol or policosanol? And what do the docs say if you choose more natural treatments over aspirin...

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Unfortunately I can't afford it so I've had to submit to the pharmaceutical way. Possibly looking at $50/month minimum.

Sadly Doctors have very little training (next to nothing) on supplements etc and are only governed/funded through the pharmaceutical industry. All of their training and product research is funded by them also so them endorsing anything natural or knowing anything about it is very rare.

I was told by a neurologist that garlic will do nothing to thin my blood and to take aspirin, I should have reminded him that even the medical profession will warn patients to stop taking it before surgery as they could "bleed out". Garlic does however have a slightly different mode of action than aspirin.

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Thanks Fee - I'll look into those. And I'm glad I can link up with a couple of kiwis with this condition. Sounds like there are all sorts of natural ways to thin the blood down a bit and I guess the test would be if it's stops my migraines.

I've got a doc appnt on Friday to talk about a haemotoligist referral so will see what comes of that... I think at the very least I should get an initial appointment to talk through my specific symptoms and then i'll to just monitor through blood tests.

Hopefully they don't fob me off...

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So I went back to GP last week and asked him to let the haemotoligist know that I suffer from occular migraines, loss of feeling in my hands and feet if I fall asleep on long haul flights and swollen feet in hot weather (the symptoms I think are likely related to ET).

I also said to make sure he knew that I really don't want to be on aspirin unless he thinks it's necessary but I just wanted him to be aware of the other related symptoms (as when he got the referral to review my bloods - none of this was mentioned cos I thought I was going for an iron test).

Today I get a call from a practice nurse to say the haemotoligist would like me to start on daily aspirin and to come and collect the prescription.

Has anyone had similar experience - diagnosed young but put on aspirin? I just want to make sure it's the best decision and not the rushed decision of a haemotoligist that doesn't even end want to have a conversation with me before prescribing medication for the rest of my life....

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Hello Kris from a sunny Guernsey UK. I know all this is so confusing when you are first aware of our condition, we are all experiencing different symptoms and seem to be being treated by our docs in various ways, I don't know whether your taking any other meds but I would just mention that if you are on Clopidgrel for another condition it will do the same job as aspirin, just be aware i.e.: thin the blood.One useful tip I have been given is if you do have to start one of these drugs EAT something with them so as to line your stomach, it really does stop you having aches or soreness.

I have had PV for 4 years now my Haematologists have to fly over every few weeks to see people with blood conditions as we are too small to warrant having one permanently on the Island. So I know how difficult it is to see someone who actually understands MPD as a whole. I am due to visit NZ near Palmaston North in November so our other friend in NZ might just have a visitor LOL but I still hope I don't need to see anyone whilst I'm there. .But keep up with this site , there is always someone you can speak to.many many good wishes, June

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