Hi I am new and have been diagnosed with ET Jak2 - MPN Voice

MPN Voice
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Hi I am new and have been diagnosed with ET Jak2

EmeraldA
EmeraldA

Hi Everyone, I am new here. I was diagnosed with ET JAK2 positive two weeks ago and am devastated. I wish it was a mistake but I am sure it is not. I am 44 years old, have no real symptoms, my last platelet count was 505, (Previous to that it was 456, before that 449 and first blood test 490) I have read a lot on here but I am really scared. I have not had a bone biopsy yet. So that worries me as well as to what they are going to find out next! I think I may be able to get my head round the fact that I have blood cancer (what a word to get your head round), but I am more worried about ET/ Jak2 progressing to MF or AML. I mean does having Jak2 make you more likely to progress? I feel really alone right now and am trying not to show it right now. I mean everything I have learnt so far has been on here and the internet.

75 Replies
oldestnewest

Hi. This diagnosis can be scary at first and it will take a while for you to adjust. I don’t know the science etc but many people have your condition and live long and healthy lives. Some do get symptoms and progress but you have age on your side and your platelets are quite low. Try not to worry (easier said than done) and use the Mpn website for information not google. Take care. Jacquie

EmeraldA
EmeraldA
in reply to Jlah

Thank you Jacquie for getting back to me. I very much appreciate it. I feel like I am groping around in the dark. Is it not a fact that a person that is diagnosed younger, therefore has the condition longer not mean they are more likely to progress to MF or AML? Does having Jak2 also make a person more likely to progress. Sorry to be asking this. I just don't have any answers right now.

Hi , it really is horrible getting the diagnosis . what made them do test? . I don’t think I was diagnosed for years as I feel well just low ferritin ..

did they say why you are having bone biopsy . ?

We are so lucky to have the support of each .

Just want to let you know we are all here to get in touch with to pour out our feelings .

Sending you a big hug x

EmeraldA
EmeraldA
in reply to Mostew

Hi Mostew, thanks for the virtual hug! I needed it!! I was just going for a general checkup and my bloods were taken. They were slightly up so they thought they would do them again and they were done. But instead of doing my bloods all the time the doctor just thought to refer me. My haematologist is in no rush to do my biopsy at this point. She has ordered a spleen ultrasound though. I am just really worried about what this is and how this will progress. As I seem to have been diagnosed with this long before 60. So the chances of it progressing must be high.

Mostew
Mostew
in reply to EmeraldA

No one seems to be answering your main question do they !

I hesitate to as don’t want to worry you more than you are but I got same impression as you ..

Which supplements are you taking ? Vitamin D , C are amongst some I take . Also have you looked in to anti inflammatory diet ?

EmeraldA
EmeraldA
in reply to Mostew

Hi Mostew, I am now taking omega 3, garlic, ginger, vit c, was taking tumeric curcumin but not sure if it interacts with aspirin so stopping for now. I am also gluten free and looking at an anti inflammatory diet with no sugar. Also drinking water and staying hydrated. As for the other question no one has answered it but have looked at some stats. As this is all new I'm not sure but if ET Jak 2 you have a 9.7 % chance of progression. I dont know what that means if you have it longer ie.get ET younger.....Also, normally with lower platelets you normally would not be sent to a hemo. and diagnosed until maybe a lot older so maybe this could have gone undetected until my 60's.......

Mostew
Mostew
in reply to EmeraldA

It’s fine to take curcumin . Liquid capsules if poss . I have consulted an integrative cancer practitioner who has a good Reputation and Ayurvedic practitioner. Both said really good For JAK 2 Good quality CBD is worth reading about to .

(I take aspirin )

I wasn’t diagnosed till late . Sure I had it for years , so I would be encouraged that you can do some supportive things now .

I think I don’t have symptoms as I have always been interested in natural approach to my health an diet .

Please put your energy to what is going well and what you can do to keep things flowing .

Listen to lots of ideas and think about what suits you .

Ps Try not to imagine what you havnt got !!! Easier said than done ..

Hi EmeraldA, welcome to the forum. I have ET JAK 2 Positive, diagnosed seven years ago now, and If anything my health improved once on Hydroxycarbamide and Enteric Coated Aspirin as before I was told my health problems had been ten fold no one doctor could get to the bottom of it all, but in the end my GP decided to arrange a full blood count, and this showed that my platelets were all over the place, so got an appointment with a Haematologist who did the JAK mutant test and the rest is history, since then although a shock at the time someone telling me that I had a rare blood cancer, I have turned my life around all be it that I am a lot older than you, you have so much more going for you.

The thing to do is to ask Maz our super coordinator to send you booklets on ET and she can also arrange a buddy for you, this is someone near you who has the same condition as yourself you can talk too in times of worry and who is always there for you, even if it is via e.mail or phone it just helps to talk.

Not to ramble on to much more, but I improved my lifestyle, by eating well lots of fruit and veg, fibre, fish and lean meat, and a must when on Hydroxycarbamide is to drink at least 2ltrs of water a day flushes any nasty toxins through the body, also keep to a good exercise routine this is for your own well being, and mindfulness, Yoga, Pilates, this all really work.

Last but not least stick to this forum it’s the only way to go, don’t do Dr Google what ever you do. And you can still enjoy a glass of wine or fizz now and then.

Life is for living and you have a very long way to go, you will find many on here who have had an MPN for many years and from a very young age.

I know you feel scared and alone at the moment, but this will soon fade, just keep talking to all of us.

Jean x

EmeraldA
EmeraldA
in reply to Superwoman

Hi Jean, Thank you very much for your kind words. I thank you also for your great advice about eating healthy. I have been looking at how I be healthier and have started taking some supplements as well as first steps. So any advice for whats ahead and how to deal with it is greatly appreciated as I have no idea other than what I have read up on.

Bears23
Bears23
in reply to Superwoman

If you don’t mind me asking, what type of problems we’re you experiencing prior to starting meds?

EmeraldA
EmeraldA
in reply to Bears23

None that I am aware of. I had three bouts of itchy skin one winter a couple of years ago but I changed to a non perfumed shower gel and haven't had that since.

Mazcd
MazcdAdministrator

Hello EmeraldA and welcome to our forum, we all understand how you are feeling at the moment, it is very scary when you are given a diagnosis, I would urge you to read as much as you can on our website mpnvoice.org.uk there is a lot of very useful and accurate information on there about all the MPNs, and the different medications used to treat them.

Also have a look at the real stories, people who are living with MPNs talking about their experiences :

mpnvoice.org.uk/living-with...

This forum is a great source of information and support, so please do ask any questions you have, we will all do our best to answer them and help and support you. We do know how you are feeling and hopefully we can make you feel better and less alone and scared about it.

Best wishes, Maz

EmeraldA
EmeraldA
in reply to Mazcd

Hi Maz, thank you very much for getting in touch. I have lots on the site I feel fortunate in having this site to refer to. I suppose at the moment my main question is how likely is ET with Jak2 likely to progress to MF or AML? If I am honest that is my main question right now? Thank you

Minu68
Minu68
in reply to EmeraldA

Hi, EmeraldA,

I have the same diagnosis as you, was diagnosed 8 weeks ago, started treatment 5 weeks ago. At age 51, I am also at a younger age than average to be diagnosed. However, my go did not refer me to haemotology til my platelets were around 900. They checked back in my records (yearly blood tests for some years due to a medication I take for another condition) and concluded that I have had it for 10 years.

Be assured that you will now be monitored and treated appropriately. Be assured that this forum is a great source of information,advice and support.

Like you I was concerned about progressing onto MF. I have looked at everything I can find, looked at (it feels like ) every link, and have found that less than 5% progress in our category of MPN. My sister is a scientist working in the forensic DNA field, and has been great in helping me understand some of the medical publications and research documents. From what I have found it seems that this is much less likely to occur if you are treated. Fibrosis takes a long time to happen, and is much less likely if you are diagnosed when your platelets are at a lower level. You will see some on this forum with levels at over 1000.

It was such a shock, I remember, when they told me. I am still feeling like it is a bit surreal - apart from a touch of high blood pressure, normal-ish at my age, I feel healthy.

You can easily feel overloaded by getting this diagnosis and trying to understand it, so do keep reaching out for support on here. Also take time to look after your mental health, take your mind off this regularly if you can, do an activity that you get absorbed in to give your mind some 'time off' . I know that's hard, as your thoughts are going round and round the diagnosis and all the information it is having to take in.

Do look at changing or adapting some of your diet, it seems to be a main recommendation from fellow MPNers on here, but be realistic, don't try and do it all at once. Make small changes and then keep going ,as much as you can realistically do. The first one I did was to ensure i drink much more water than I used to, and I've added other changes slowly,at my own pace.

The 'cancer' word is truly scary, but we are treatable, and it is possible to live a long life for us, and there is continuing research. Cancer treatment has progressed massively in our lifetime, and it is ongoing, so whilst there is not a cure for us now, it is possible there may be one within our lifespan, that's what I keep in mind.

My thought are with you, here's another big virtual hug for you xx

EmeraldA
EmeraldA
in reply to Minu68

Thank you so much for your reassuring words and good advice. 5% is lower than what I have read. So that is some good news. Also, what is good news is that if it is caught early and treated early less chance of progression. I am also looking at how food can turn genes off.....I know it's a theory only but eating healthier cannot hurt. It has been a real shock. I think also because of covid19 I have kind of been left to my own devices and because I haven't had a bmb yet I'm holding g my breath that I'll get more bad news. I just want to be here for my daughter going up and be here for all her important milestones. Thanks again for ur kind words.

alibick
alibick
in reply to EmeraldA

You ll be there for your girl! That was my initial fear. But you will adjust in your own way to the diagnosis. We just need to batter this ruddy virus now and get on with our lives post covid. X

Hi EmeraldA, I was diagnosed October ‘19 with ET Jak2 positive aged 42. I like you struggled with this in the beginning. I ventured onto Dr Google, big mistake. I now only use MPN or Bloodwise. It’s a much less stressful environment to research the information. I was given the option of having a BMB as a base line, which I done. I would recommend that when you have your BMB you use Entonox. I am currently on Hydroxycarbamide and Aspirin. Try not to worry, but it’s easier said than done.

EmeraldA
EmeraldA
in reply to Vtr1000

Thank you Vtr1000. It is easy said than done isn't it. Thank you for getting in touch. I do really appreciate it. I dont suppose you know if it is a likely svernio that a person can just be on aspirin only until 60ish? Or is that out of the question?

Vtr1000
Vtr1000
in reply to EmeraldA

Hi EmeraldA, yes it is possible to be just on Aspirin. It’ll depend on your individual health. I have the pleasure of other health issues so combined it puts me at high risk, so I was straight in at the deep end. I look at it that long term my health will be better for it. As it stands I have some mild side effects from the meds but life hasn’t changed.

Ps. In a way it’s more difficult to accept when you feel fine ...

EmeraldA
EmeraldA
in reply to Mostew

Yes - but I also glad that I feel fine. I run and am active. I hope it lasts!!!!

Hi

Welcome aboard your MPN journey. I am 43 but was diagnosed at 34 with PV JAK2 positive. I used to have monthly venesections which kept me well. Last August 19 after a bone marrow biopsy , I discovered that my PV has progressed to MF. I now take Ruxolitinib. I completely understand how scared you feel and it took me a little while to get over the shock. But when I was diagnosed my eldest daughter was 6 and my twins were 3 so I had more than enough to keep me busy. I also work full time as a teacher so that’s also busy but not so much at the mo! Life throws us these little challenges and you will definitely find your inner strength. Please don’t worry about what the future brings. Just live your life as you have been doing. I used to always worry about it but my husband had a very unexpected heart attack 2 years ago and since then we just live for the moment!

Take care

Michelle xx

EmeraldA
EmeraldA
in reply to MamPRV

Hi Michelle, thank you very much for sharing your story. I am sorry to be asking about MF. I hope I was not too insenstive to your situation. I am still only learning about the condition and the group of conditions. You are right about life, but I suppose I am a planner and problem solver. Best wishes with ur treatment a different hope it is working well. X

alibick
alibick
in reply to MamPRV

Michelle, you're an inspiration. Thanks for your positivity. I'm more than a year past my diagnosis, but, as I told Prof Harrison, I haven't been ready to take the lid off. Well, Covid has kind of upped the ante and given a different pest for us all to deal with, so a shared understanding on this community page is so good for the soul.

I, like you, am a teacher, I've gone from full time to 3 days as the stress wasn't letting me be well. And I now get to spend more time with my 11 year old and 6 year old daughters, and am loving the opportunity that the shutdown gives of having even more dedicated time with them and hubby to just be! I have ET with stage one MF, but still only aspirin as my other bloods are playing nicely.... Though after this lockdown, I'm not sure if they ll look as clever next quarter!😁

Welcome Emerald. We can all prop each other up on here and I how you ll manage to get your head around this soon.... Though there s no time limit.... Just in your own time and space. X

alibick
alibick
in reply to MamPRV

Michelle... One more thing... Have you gone into shielding mode yet? And if so, how do you envisage the practicalities of life with your daughters for the duration? My hubby is currently being furloughed, so he can help, but if and when they reopen, I can't imagine how I ll manage to keep the girls inside,Spring to summer. We re in A Victorian terrace with a fairly small yard. Not having received an NHS letter as yet, I had thought there may have been a reprieve, till I heard we d be in the second wave. Got a text tonight. Best wishes to you and familyX

MamPRV
MamPRV
in reply to alibick

Hi

Thank you for your lovely message and it’s great to chat to someone who has young children too. I am shielding because my nurse told me too but I haven’t had a text or letter. Keeping the children entertained is challenging but my children are older and we luckily have a garden. Take care and stay stay strong.

Michelle

alibick
alibick
in reply to MamPRV

Thanks Michelle. It is lovely, yes, to find someone in a similar position as a mum, with the same, unique, condition and a teacher too. Are you primary or secondary? It d be good to have someone in a similar professional position too with the implications that Covid and MF pose when the time comes for schools to start functioning/opening again. That really helps me not to feel so alone in a situation that literally no one but you and a few others can fully understand. So please keep in touch if you are able, especially thru this strange and difficult movie in which we are the unwilling actors. Best wishes.

Alison

MamPRV
MamPRV
in reply to alibick

Hi Alison

I am also really pleased to have found you on this forum. I teach in year 2 in a primary school. Keep in touch.

Michelle x

alibick
alibick
in reply to MamPRV

Ha, no way.... I was a veteran of Year 2 who s just moved to year 3 this year. At least, silver lining, no SATS and no chance of moderation or OFSTED for you this year. We had moderation last year and it almost sent me over the edge! There ll still be plenty for us to do at home, even when the powers that be decide to reopen the schools. Any help or support please ask. Also, my friend is our NEU rep and keeps me up to date on the latest NEU rulings, especially for vulnerable staff and their families, so Ill pass anything on that is relevant. Do you know how to put your details into a list, rather than having to keep coming back to this thread? I'm not that up on the forum use.? Enjoy the Hol weekend with your family x

I was diagnosed with ET over 30 years ago. About 7 years ago it progressed to PV. I am JAK2 positive with a mutant allele burden of 25%. I have lead a long rich life thus far and at age 64 plan to continue to do so. It can be difficult at first to wrap your head around having a "blood cancer" and deal with the risk that it may progress to a more serious form of MPN. Something to start with is to know that people with ET typically live a near-normal to normal life span. It is more likely that you will have to manage symptoms that impact your quality of life than it is that the ET will result in a premature death.

The platelet counts you cite are quite low for ET, barely over the normal range. It seems likely that you are only mildly affected by the JAK2 mutation at this point. A typical treatment protocol if you are under age 65 and asymptomatic will be aspirin-only. I was aspirin-only for most of the 30+ years and have done fine on that treatment protocol. I have never had a single incident of thrombosis, in fact tending more towards bleeding when on aspirin.

Something to find out is what your JAK2 Mutant Allele Burden is. This will have impact on the course of the MPN that you will have to deal with. People with ET tend to have the lowest, MF the highest, PV somewhere in the middle. There is a lot to learn about ET, the JAK2 mutation and the impact it will have. I have actually had more trouble with issues around the systemic inflammation that can come from the JAK2 mutation impact on the over-production of inflammatory cytokines.

Regarding the bone marrow biopsy, it is not necessary to establish the diagnosis. It can be helpful when there are questions, however. Some docs routinely to them on most MPN patients, but not all do. I have not ever had one. I asked about it when the ET progressed to PV, but all hematologists I consulted said I did not need one. Do ask about the goal of doing a BMB and what the benefits of doing one in your case are.

There is a lot to learn, but you will have plenty of time to learn it. This forum is a great place to get information and support from other folks with MPNs. You will find a diversity of opinions and a lot of support.

All the best to you.

EmeraldA
EmeraldA
in reply to hunter5582

Hi Huntet5582, thank you so much for all the information. It really is somthing to build on. I will ask about my Allele burden it was not mentioned when the diagnosis was given. Somthing I feeling will hold my breath for when told. I plan to start an anti inflammatory diet to give myself the best chances. Again thank you so much for the information u have provided.

hunter5582
hunter5582
in reply to EmeraldA

An anti-inflammatory diet can be very helpful. I also use a Turmeric-Curcumin supplement that is particularly bioavailable. It has done more good for the osteoarthritis than any NSAID I ever took. If you get interested in something like this, be aware that not all supplements are the same and the bioavailability is a big deal with Turmeric-Curcumin supplements in particular.

I expect you will find out that your JAK2 Mutant Allele Burden is quite low. Here is an article on this topic you may find helpful.

ncbi.nlm.nih.gov/pmc/articl...

All the best to you.

EmeraldA
EmeraldA
in reply to hunter5582

Hi again Hunter5582, glad to hear that I may be one one of the right paths in regard to diet. Just got to work out what it is exactly. I will lookat my curmin that I have. Bioavailability is a new term for me but I appreciate the advice yet again and will look into it. I also reading the The Metabolic Approach to Cancer. So looking at diet and cancer at the mo. Thanks for ur reassurance around Allele burden. I do really hope so. I hope that you are keeping safe during these crazy times.

hunter5582
hunter5582
in reply to EmeraldA

Bioavailability = your body's access to what you are taking in. Turmeric/curcumin does not readily pass the barrier in the gut to get into the bloodstream. It needs a carrying agent. Black pepper (piperine) is commonly used. I use a supplement with CurcuWin, a proprietary bioavailable agent.

Diet can be a big help in a variety of ways. Anti-inflammatory agents in foods can be very helpful. Keeping weight off and boosting overall health is good no matter what. The evidence is that diet rich in anti-oxidants and flavonoids, whole grains, limited processed anything is better for us, especially in light of having a MPN. Given out propensity for neoplasms, limiting exposure to carcinogens present in the food chain is also just a logical precaution. Avoiding exposure to antibiotics, synthetic hormones, xenoestrogens, etc. in the food chain again just is a logical step to take. I pay attention to all of the above without obsessing about it. Loosely follow an anti-inflammatory - Mediterranean Diet. I did manage to loose 50 pounds, which really helps on the wear and tear if nothing else.

Do find out more about all of the above and try not to stress too much. You have plenty of time to sort this all out. In these crazy times, it is important avoid stressing out and remember to still have fun (without taking undue risks).

Be well and stay safe.

EmeraldA
EmeraldA
in reply to hunter5582

Can I ask is it ok to take Curmin with Asprine? I checked and my Turmeric has black pepper in it.

Hunter I quoted this section from your letter. I have Jak2V627F with ET. I’m still very confused with diagnosis and my doc, sweet as he is, isn’t making this clear. Maybe you can help.

“I have actually had more trouble with issues around the systemic inflammation that can come from the JAK2 mutation impact on the over-production of inflammatory cytokines.“

This is what I understand in a nutshell....

1.You can have ET without JAK.

2. ET is a cancer that makes too many red blood platelets

3JAK is a mutation of the blood cells which cause uncontrolled production of the JAK protein in the bone marrow. (My BMB normal as well as spleen)

4. JAK mutations are known as MPNs.

5. ET is one form of JAK2 therefore one of the MPNs

So....

1. I’m assuming one cannot have JAK2 without one of the MPNs even tho you can have ET without JAK2 ?

2. If both JAK2 and ET make too many platelets what’s the difference between the two?

3. How can you have ET without JAK2 as JAK2 mutations are known as MPNs? What other kind of JAK2 is there?

4. How does having both effect the health instead of having just ET?

5. If you have ET without JAK2 is prognosis any different, symptoms any different?

6. What is Allele burden? Never heard of it.

7. What impact does Allele have on ET?

Which brings me to your statement...what issues are you referring to?

What impact?

What in the world is cytokines? Sounds like something that might make Superman shudder! I know it’s associated with proteins. Still going to start Hydroxycarbamide

I had asked the doctor basically the same questions (on patient portal as we’re having a general medical shut down except for emergencies) and the answer was short....Possible to have ET without JAK2 and treatment is the same. Still take Hydroxycarbamide. End of conversation. 😏.

If my questions are beyond what you’re familiar with do you have a suggestion where to get answers? Google is full of info but I’m more confused than ever after reading everything. 😬

Hope all continues to be well with you.

Greetings from Fleetwood England. Welcome to this web safe space, where you will meet like minded people who have started at the same entry point of their journey like you.

We are here to support you emotionally and as it is a place where you can explore your worries and concerns you are therefore not alone in this.

Perhaps staying off the internet is essential in finding the right information that is suitable for your particular condition.

No two people are the same but we all share similarities.

Be guided by your team who are all Clyde up to you.

Small changes in life style such as diet, activity, mindfulness, are all helpful.

My consultant said to me this is intimately manageable. A saying that has helped me.

I know you want some answers immediately and you have found information on here to help you.

Remember you are not alone in this .

You may find that Maz can suggest some appropriate literature that will fill in the missing links.

Start small, keep off the internet and stay in touch.

Regards .

EmeraldA
EmeraldA
in reply to wotan10

Thank you for taking the time to respond. It certainly makes me feel less alone.!! I need this to be manageable so it is good to hear. Also going to try and not google ET for now it's too overwhelming for me tbh. I plan to overhaul my diet. No sugar. Have added in some supplements , go anti inflammatory, increase excerise during covid....Stay safe Wotan10.

Hi Emerald A,

Please don't worry about the word 'Cancer." When I was diagnosed in 2005 with ET Jak2+

it was not known as cancer. I was very frightened like you as I had no obvious symptoms and had lost my husband in 1993. I was then in my mid 60's. Looking back I had had symptoms that I did not recognise for several years before it was diagnosed. Like burning feet and eye disturbances.

As my platelets were so high, I was put on to HU straight away. The only side effects I had for many years were mouth ulcers.

I have had several changes in medication over the years for various reasons but I am now nearly 79 and am still around to tell the tale.

Once you accept that you have this problem you can live with it and begin to treat life in the normal way. You will survive this but don't let your anxiety get in the way.

The bone marrow biopsy is very important so don't put it off. There is no reason to think your ET will progress.

This forum is marvellous and has helped me on the occasions I have needed advice. We are a special family and all willing to help.

I live in Australia now and we have just started a forum here too with the help of Maz. it was started by a guy called Steve and he goes by the name of Socrates on this UK forum.

You will find us under MPM-MATE.com if you are interested.

Best wishes,

Katie

EmeraldA
EmeraldA
in reply to Mufftreacs

Thank you Katie and I am sorry for your lose. Nothing feels normal at the moment and that's besides covid19. I dont the biopsy will happen until covid is over. My hemo.has requested a spleen ultrasound for me though.

Hi E:

Sorry you feeling so anxious. It sounds an odd thing to say but believe you me you will get used to it! I am the same as you and diagnosed April 2016 and am quite accepting of it all now. Also feel healthy.

xx

EmeraldA
EmeraldA
in reply to Booagain

Thank you. I really hope I get to that stage and that this all works out. I'm looking at dietary changes at the moment to give myself the best chances. X

It seems that your main worry is progression and whether it's more likely because you have been diagnosed at a young age. I was diagnosed with ET JAK2+ at 39. I still have ET at 58. Years ago I discussed my fears about AML with a very experienced haematologist and he told me that it can happen, but in all the years he has been treating patients, he has never seen a case of ET progressing that way. As for myelofibrosis, yes of course it might progress eventually, but when I had a scare last year, some members of this forum who have MF were very reassuring about the fact that they are just getting on with life and living with it. Best wishes to you, Jennie

EmeraldA
EmeraldA
in reply to Otterfield

Thanks for the reassuring words Otterfield. Thank you for getting in touch. It seems outside of this site no one knows what ET is. Everyone here has been so lovely too.

Hello. Please don't be frightened. I was about the same as you with a count of 600. I know I have had ET, JAK2+ for years now but this was only diagnosed in January 2018, when i was 66. I had already had one minor stroke a few years ago and a number of TIAs. I say a number because there were so many over the years, that I could not begin to count them. the first being in the early '90s.

Although /I read everything I could about the subject, it took me over a year to get my head around it all and not feel how you are feeling.

I have never had a bone marrow biopsy and investigated why this was and how it could be assessed that I have a JAK2 mutation. I was told it was entirely ossible to assess this from the blood tests I had.

My understanding about JAK2+ is that with ET, we are more likely to be JAK2+ than not. There doen't seem to be anything written about likelehood of further mutation but it's something you need to ask of your haematologist.

I hope this helps. The secret to feeling better for me is eating the right foods (low inflammatory), drinking water daily in order to stay hydrated and walking daily. Further general exercise and some yoga.

Personally, I'm really lagging behind with my exercise regime but I'm assured it will come back. the wort part of this for me is the extreme fatigue. cnstantly battling that !

Medication I am on is clopidogrel and Pegasys. Let me know how you get on please. Worry is the last thing you need as the negativity causes further problems for you. Positivity and a lot of communication on this site and with your haema are a must. Keep i touch. All the best. Penelope

EmeraldA
EmeraldA
in reply to JackLina

I know you are right being postive is the best way forward. I hope I get there. I am looking into an anti-inflammatory diet at the moment. A few people have mentioned it so I must be on the right track. Going to see if there is an app for that. I'm also wondering are people getting diagniosed now at a much younger age than they used to be?

JackLina
JackLina
in reply to EmeraldA

I have a theory about that. The tests are not being done because GPs are unaware of the condition and few hospital doctors know about it and the symptoms. I have definitely had this for over 20 years. It was only when I went to A&E with yet another TIA (because I got into the habit of not going every time because I was treated as a stroke victim and I knew I hadn't had a stroke). I was lucky to have a doctor on the ward who listened and recognised the unlikelihood of me having so many TIAs and gave me 9 separate tests and MRIs.

I'm sure there are people out there who have this but are undiagnosed.

Hi Emerald A,

Welcome to the Forum, I remember 2 short years ago feeling as you do now..

I was defiant at first when told I had to commence Hydroxycarbamide Oral Chaemotherapy..

I was ET JAK 2 +

I remember crying in the Shower not wanting my husband to see my fear..

I found this Forum and was welcomed by a great group of people..

As a Nurse I knew of the pitfalls I may face, the uncertainty of all of it...

You are young and you will cope with whatever comes your way.

Try to stop worrying about MF & AML..

Understand your ET, change your Diet, Exercise do whatever it takes..

Concentrate on the here and now, if and when a Bone Marrow Biopsy is considered by your Haematologist, personally I would accept it...

I have had 2 BMB, my mantra is better to know what is actually happening as opposed to wild imagination and very probably getting it wrong...

Your question of MF & AML is very much unanswerable in my opinion..

Who really wants to tell you the odds of having either one of these !

Let your Haematologist guide you, once you get the Booklets from our Maz, read the facts...

If you do have a BMB and find you have got MF..

You are young and Stem Cell Transplant therapy, is the only known treatment for MF.

All is not lost, give yourself time and space to get your head around this..

You can do it, us ladies are a very resourceful breed...

All the Best to You with a Hug 😊

Maria..

EmeraldA
EmeraldA
in reply to pontygirl

Thank you Maria for getting in touch. I think everything has just stopped because of covid. So I feel at the moment I can only understand ET not really my ET as haven't had any further tests answers to questions that only occur as u read about it. I hope you are keeping well and staying safe during all these crazy covid times.

Welcome to the forum! As you can see from the replies so far, there is plenty of knowledge, experience, and wisdom available from MPNvoice members, to go with the monitoring and treatment that you will receive from your haematologists and specialist nurses now that you have been diagnosed. Good luck!

EmeraldA
EmeraldA
in reply to JaK2ET

Thank you. I will. Although I dont think much will happen until Covid is over. This will give me some time to learn, adjust somehow and improve my health in the ways I can.

Sorry to hear about your diagnosis. I learned I had ET jak2+ when I was 48, now 55. I would recommend getting a bmb! It’s is also a good baseline. When I had my second bmb they were able to clearly see that it was progressing very slowly comparing it to the first! This is a great forum that will help answer questions along your journey!

EmeraldA
EmeraldA
in reply to Bears23

That is great advice Bears23. I will take the offer up when offered for this reason. Although terrifying. Not the procedure the results.

Yep. Still in your phase of acceptance. I’m 77 and got all my final results a week ago. I knew I had JAK2 but felt like there was still unknowns until I had a spleen ultra sound and bone biopsy both which are normal. Now I feel like I can move on with knowing it’s ET and all else is normal.

There is strength in knowledge. I understand some concern on using Google but I was so ignorant of this disease that I didn’t know (still don’t) enough to even ask questions. Have never ever heard of such a thing and googling at least gave me definitions that I could talk to my doctor about. But this Forum is made up of people who actually have this cancer so I go to the doctor (google) for the medical information but I’m learning to go to this forum for the practicable of living with it. It’s one thing to know WHAT it is but a totally different ball of wax to know how to deal with the every day ups and downs. Only someone who is going thru the experience can truly understand how each of us feel. Every time I read a question I hadn’t thought about and see the answer I feel more in control.

Having JAK 2 was puzzling and the doctor wasn’t much help in explaining it but after reading the answers you got I’m beginning to better understand a little bit more. Still not for sure.,,,, I know (I think) you can have ET without JAK2 but still unsure how it effects the diagnosis. My doc said it doesn’t change the way it’s treated at this time. I’m waiting for my Hydrea

prescription to arrive.

Still a lot of unknowns but I feel I’m better equipped to look forward. Scared? Absolutely but no longer petrified. I check out the forum every morning before getting up so maybe I’m going overboard but right now it’s what I need. I wish there was some way we all could have a “reunion”. Would love to meet people who understand.

Good luck and God bless.

Hi, I know that most of the forums will be I expect cancelled for this year, these are all over the country, Maz arranges them, they are a great way to meet the rest of us MPN people and you get to hear and meet some amazing Haematologists who are top in their fields of expertise.

I live in Bromley Kent, so was able to go to last years one in London at Guys, it was very informative, and met some lovely people, it’s great to be able to put a name to face.

So look out for this information when Maz puts it on our forum. There are sometimes an all day one or an early evening one.

This is just a though.

Jean

Sorry did not mean to say though, but thought. And if some of the forums are later this year they might not be cancelled, have a look at all the forum dates and where they are on MPN Voice.

Jean

I was just wishing. Had no idea there were really meetings!! That’s exciting. Hopefully soon and here in the states.

Yes I think have quite a lot in the states, but Maz would be able to help there.

Jean

Thank you for getting in touch. I'm sorry you received ur diagnosis only a week ago too. I am most definitely in the acceptance phase. It feels a bit wild tbh. I felt perfectly fine before diagnosis now I feel I'm going to die at the drop of a hat. I haven't had the spleen or bmb tests yet. I doubt they will be any time soon with covid. Right now I'm just hoping beyond hope that this has been caught just super early and this gives me a chance to improve my health and lifestyle. Take care and I hope u are staying safe during this time. One thing to mention is alot of people here mention anti inflammatory diets might be worth looking into. X

Hi Emerald,

Firstly, welcome to our group!

I understand you completely as does everyone else here! The first weeks are tough and your head will spin. But please do not worry. You’ll be fine and we are here for you. Unfortunately, many doctors missed all proof of my ET for years and I was diagnosed after 8 years, right after having my 3rd TIA with 909,000 thrombocytes! I only found this forum 1.5 years after my diagnosis. It would have saved me a ton of fear, insecurity and worry!!

Do the BMB. it’s important to have a proper diagnosis and a base line for later, also to know that there is no fibrosis. There are a few treatment possibilities. For such a low level of thrombocytes, Only a mini aspirin is usually prescribed to make sure your blood stays thin. Mine wasn’t for years, I had all kinds of crazy symptoms, even caused glaucoma, which has now not gotten worse. I was taking so many meds that they were further destroying my body. I was like a sick 70 year old at 48, with a 9 yr old at home and dealing with old and dying parents.

After diagnosis, I immediately went on the autoimmune paleo diet (I have 3 alternative doctors in addition to my fifth haemotologist). I finally found one that listens, discusses and accepts and understands the alternative therapies. She really takes time and I feel taken care of. With lifestyle change, I slowly got rid of all my allergies, intolerances, 30yr old eczema problem, depression, bloating, brain fog, dry eyes, chronic sinusitis, fatty liver, swollen spleen, incontinence, teeth plaque, etc. I also got all my amalgams and two weird looking root canals out. 2.5 stone also slowly left my body after 25 years of useless diets. I've also been able to get my Hashimoto thyroiditis to get better. I only need 40% of the hormone I used to take for 20 years. I feel better today than 20 years ago. I’ll be 55 next week. ET started at about 43.

On top of the diet, I eat as much organic as possible, NO produced foods, NOTHING That comes In a package, no chemical cleaners or cosmetics in my home. I wash clothes with chestnuts and oxygen powder, the house, dishes, etc with vinegar and bicarbonate of soda. All these changes took 1.5 years to master.

This diagnosis has somehow lead to a better and happier life. I feel so much more in tune to what life is really about and my family and I enjoy life more than ever.

My advice is to inform yourself well, which you can do on the MPN website, and through idea exchange. The people here are a true and very knowledgeable family! Many big hearts. You’ll be fine. You need docs with whom you feel really comfortable! Learn to listen to your body, sleep well, take care of you liver, drink lots of water, do meditation yoga, whatever is needed to keep your psyche balanced. Get sunshine. Get rid of negativity in your life (as much as possible). There’s so much you can do. It’s a journey; one that can be fascinating. It’s a step by step process, for which you have to find your own timing. Each and every one of us of different and we have different needs. Only you really know what they are.

Let us know how you are coming along and how your test was. Till then, remember, we are here for you. No thoughts are tabu. Keep well, take Covid9 seriously and protect yourself!!

🙂 Anag

ps. I’m only taking aspirin and over 60 .

EmeraldA
EmeraldA
in reply to Mostew

That is great news! I'm only aspirin as well. I dont k ow if that is an interm. thing.

EmeraldA,

I read your post and found it very moving..... because I went through exactly the same experience in 2005 when I was diagnosed with ET and later JAK2. My count was 1400 when it was discovered, after a visit to my optician. As a result I had a blood test and all hell broke lose when they saw my high count. I had the bone marrow biopsy which confirmed the ET diagnosis.

I went through various emotions, mainly of anger but also worry about what lay ahead. I started to take Hydroxy and aspirin and the count slowly came down to around 400.

I remember my GP saying that for most of my life I can live normally and close the door on ET, but there will be occasions when that door swings wide open ........ and it did when each month I had to visit the Oncology department for blood test results and consultation with my Oncologist.

I can tell you that you will get over the shock and lead you life as normal, it’s easy to say don’t worry but if I can pass on the benefit of my own experience, I can tell you that you will lead your life as normal.

My advice to you is don’t surf the internet looking for answers, it will scare the hell out of you. There is a huge amount of disinformation, unqualified and will only serve to make you even more worried. You can rely upon healthunlocked and MPN sites but stay away from others.

Now is the time to put something new in your life, a hobby, sport or interest that will be a distraction.

You are OK, life does go on.

Best wishes to you.

EmeraldA
EmeraldA
in reply to G1DRA

Hi, thank you for your story and experienced. It really helps so I appreciate it. I feel super topsy turvy at the moment. I have started a number of supplements upped my running a little bit too. In the hope I can beat this thing. X

G1DRA
G1DRA
in reply to EmeraldA

EmeraldA,

Good. You will come to terms with it and realise that it’s not going to restrict you.

I started sailing after being diagnosed and found it was a great distraction, too busy surviving at sea to worry about ET!

Best Wishes to you and stay safe. Xx

EmeraldA
EmeraldA
in reply to G1DRA

Wooowww sailing!!! What an amazing thing to do.

Emerald, where are you writing from? I was diagnosed at age 41 and am male. I’m Jak2 positive as well. The diagnosis can be scary as hell and reading can either help or scare you more depending on what you’re reading and where it’s from. You can find me on Facebook under the name kfjeff. We can talk more

EmeraldA
EmeraldA
in reply to Fushniken

It is scary. As I mentioned earlier if I knew it was not going to progress I would feel alot better. But by the sounds of things I think it is a wait and see thing :( So in the meantime I going to try and give myself the best chances with health and life style. Actually willing to do whatever it takes. Went for a run there and didnt drop dead.

I was diagnosed ET JAK2 + last April at the age of 39.... I’m on aspirin.... I started on hydroxy but I’m now on peg....

Thank you for telling me your drug history. I have to say at the moment I only understand the drug side of things in the most basic way. I hope you are feeling well? I see that you were diagnosed younger than me too. I wonder if more people now are being diagnosed earlier?

I have had ET Jak2 since I was diagnosed in November 2018. I had it for several years before that and just went undiagnosed. I spent two years with ulcerated feet and going to The Doctor and numerous Hospital Accident and Emergencies just to get turned away each time.

The only thing that made them listen was when a toe went gangrenous and I lost it. So I am the opposite. Getting diagnosed with E.T Jak2 was the best thing to happen to me. My platelets were up to 1800 at one stage.

At least I am on Hydroxycarbamide and aspirin now and living an almost normal life. I just need to get a check up every few months.

It might turn into Mylofibrosis or Lukaemia in ten or twenty years, but I will worry about that when it happens. Live life and enjoy it while you can. This could be as good as it gets and it may be all we have, especially in the current Covid-19 pandemic.

Tom

I know how you feel, I was 42 when I was diagnosed and my platelets were in the 900’s. I’m 49 now . My platelets reached 1.6 million then I was put on medication. I wish you luck you’ll be ok - Grace in NJ

EmeraldA
EmeraldA
in reply to Ggrana3192

Thank you for the kind words Grace. I think part of it was that I had never heard of it before so literally had no idea about anything and secondly it is classed as a cancer. I hope that you are keeping safe in NZ.

Hi! I am 46 years old. I was diagnosed with ET JAK2 positive too. I was diagnosed a couple of years ago. I was very upset at first. Know I am ok. I take a baby asprin daily. Wendy

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