Just a wave hello!: Hi folks, I'm new here, having... - MPN Voice

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Just a wave hello!

Hi folks, I'm new here, having been diagnosed a week ago with ET. I've been reading your posts with much interest and feel a bit of a fraud being amongst you because I'm told that my case is a mild one (platelets under 500, sorry, I can't remember the exact figure) and medication (Hydroxycarbamide and aspirin) a low dose. However, I'm just getting used to the diagnosis - and the associations with that scary C word! - and I'm very confused. I've been having fatigue and almost constant headaches for a long time, plus other lesser symptoms such as pins & needles and 'lightshow' migraines and my haemo doctor says that neither my level of ET nor the meds would cause those. I'm due to have a bone marrow biopsy in a couple of weeks, with a very long wait for results. Has anyone else had similar and could they possibly throw any light? Thanks 🙂

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Hi

Everyone's symptoms are different. Just like every body is different. I have ET. My platelet count about 700 and i only take low dose aspirin. I also have pins n needles in my fingers and toes, its gets worse when im using my phone, which can be frequently and also when im driving.

I find that after working all day im soo tired that i need to go to bed.

It took a while for me to come to terms with my fatigue but i know i cant fight it.

You know your body better than anyone Take care

J x

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Thanks for your reply, all the best to you. x

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Hi. My results for bone marrow took 8 weeks but it was over Christmas. I have ET - I’m no expert but think the symptoms vary but fatigue is something most have in common. Hope it goes well. Jacquie

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I also have a mild case of ET. For 15 years my platelets have never gone over 560k. I do get the optical migraines but very rarely. I don't get the pins and needles feeling. My fatigue is an ongoing battle. I'm surprised you are being medicated with HU at such a low platelet count.

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Well, you just have to trust that the doctors prescribe what's best, don't you?! Thanks for replying.

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Not always.

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I agree, what on earth would the Dr put her on Hu with such low platelets. Mine would have to be over a million before I would consider HU. I would look into that decision. The platelets are not much above normal.

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Thanks Clubdino and Lindiloo3, but presumably the doctor studied for several years to get where she is - two months ago I had never even heard of ET! Who am I to argue?!

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Nobody is suggesting you argue with your doctor. But definitely do some research of your own. On one hand your doctor is saying that your ET is not severe enough to cause ocular migraines (lightshows) and headaches but on the other hand is recommending chemotherapy for you. That's kind of contradictory. One thing I have learned after 15 years of this disease is no doctor knows everything and it is very important to do your own research. HU comes with it's own set of concerns such as an increased risk of skin cancer. I agree with the other members who recommend you see a MPN specialist.

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Yes, I agree with you too, Lindiloo. Platelets almost normal. Why Hydroxy?

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The general consensus is that my age puts me at high risk.

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Hi, yes they keep telling me that too but in my case it's probably correct as I'm 83. I'm trying to look back to find a post here by someone in Australia who put a web link on giving a list of MPN specialists in Britain. I see you're from North Yorkshire. So am I. I think the nearest Specialist to me is Carlisle or possibly York. I attend James Cook University Hosp in Middlesbrough where you'd think there would be N MPN Specialist being one of largest hospitals in Britain, but there isn't. If I find the link I'll send it to you or he may see your post himself. Regards, Fran

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I didn't see York on the list, that would just about be reachable. But I'll see how I get on where I am for now. Thanks for your input.

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Sorry, just noticed that Garstongal already gave you the link, which I have just re- discovered but it doesn't help us Northerners unfortunately. Good luck in your onward journey. I had a BMB and they confirmed ET JAK 2+ a little over a year ago. On Aspirin and 500 mg Hydroxyurea daily. Regards Fran

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Although I have been told because of my age of 67 I should be on HU, my platelets are around 700, have been as high as 970 but was very stressed at the time. I told my Heam you cannot just go on age you need to go on symptoms. I have nil so he agreed with me in the end. You do need to challenge the DRs rational for their decisions. He did say to take care of your Cardiovascular health which is the most important thing for your wellbeing.

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Thanks for your reply,Lindiloo. I have asked at the two,appointments I've had at Haematology if I could just take Aspirin without Hydroxy. First one was a non-committal doctor who didn't really answer my questions and who I've requested not to see again. Second was the Specialist Nurse who said the decision was mine but pointed out the risk of clots ,stroke etc. I'm still taking it but still not sure what it's doing to my kidneys,liver and tummy!

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Oh just to add I have always been on aspirin 100mg. I do know the risk of clotting with high platelets. I have ET with CALR diagnosed in 2015. I think we are slightly different over here in NZ. Because I have moved and just seen a second Haematologist, she said just continue the way I am. Watch and wait. I am just getting over shingles and have to say that has been worse than any thing to do with ET. Love Lyn x

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Welcome to

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Sorry I was going to say welcome to the group. I've joined only 2 months ago and have already gained so much just by reading all the posts. My platelet were 627 the first 3 blood tests, confirmed JAK2 ET after BMB, since I have been on 500mg HU n blood thinner daily, and my very last blood test platelets were down to 475, my Haem told me even platelets improved I still have to keep on medications especially I am over 65. I can trust my Haem who is a MPN specialist n researcher if blood cancers.

But I agree with clubdino that doctors are not always right about our medications especially they are not familiar with MPN diseases. By the way how did you confirm you have ET before BMB.

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Thanks Lifam. It was confirmed by a blood test which had to be sent away and took six weeks to get back! We wondered if the high platelets could have been due to some other issue I had going on earlier, but the JAK2 mutation was confirmed. Also, platelets had been up for a long time. I'm 67 by the way.

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Hi, Do have have any high risk factors for clots? Smoking, previous clotting event or family history of thrombosis? If not I would certainly question the use of Hu.Aspirin I can understand being prescribed but I would expect a watch and wait at you platelet level or at least held off until you have had your results from the bmb. I would certainly ask questions of my haematologist why they think I need to take such a toxic drug. Regardless of how many years she's been studying you need to ask if she is an Mpn haematologist or general haematologist who cover all blood disorders. The drs are not always right as previous posters say and sometimes a second opinion is always an option open to you. Atb,tina.🤗

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Thanks for your comments. I've never been a smoker, I have high-ish blood pressure (controlled) and I guess my age is against me.

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‘Over 60’ seems to trigger automatic use of Hydroxy, certainly in the UK...

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I am 69 and was diagnosed early May this year after BMB.

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Welcome to this group of supporting friends. I have PV which means I over produce red blood cells, WBC and PLT, I’m also JAK2+. I have all your symptoms. Learn what you need to learn. Pace your fatigue. Listen to your body. Then find enjoyment. Sending you a welcoming e-hug.

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I was VERY FATIGUED before diagnosis. I remember it distinctly. It was my son’s wedding and I didn’t want to dance. I thought it weird as I’m usually one of the first up and last to sit down.

The my platelets were just over 500. So I think your doctor is wrong regarding that.

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Hi blaablaa,

Welcome to the forum. This is a hugely supportive place to come for information as everyone is lovely and there will almost always be someone experiencing the same thing as you. I was diagnosed with ET a few months ago and am also considered a mild case as my platelets are between 500 and 600. As I'm under 60 with no history of thrombosis (I'm 45 years old) I'm currently just on aspirin. However, like you, I've been told by my consultant that none of the symptoms I experience are related to ET. I too get lightshow migraines, pins and needles and also numbness. Like most people here I suffer with fatigue. I also experience brain fog and dizziness if I push myself or am chronically stressed. These seem to be very common symptoms All the lovely people on this forum share, in varying degrees, and it also seems to be a common thread that haematologist who don't specialise in MPNs seem to dismiss symptoms that so many of us suffer with. Slightly bizarre in fact. Perhaps because they haven't found any clinical mechanisms which link platelet aggregation and these symptoms? Anyway, I digress. As you're finding, lots of us have very similar symptoms. This is a fantastic place to get information and support. I feel very fortunate to have somewhere to come to as my consultant, much as I liked him, wasn't very helpful regarding symptoms. Perhaps an mpn specialist in your area could give you more support?

You've probably already read that drinking lots of water and exercising regularly can help with symptoms. Also resting when you can. Good luck with the bone marrow biopsy and keep us updated

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Thanks. Really interesting. So if we're all experiencing these symptoms, what are they related to if not ET? I think what is disconcerting is that if it's not ET causing them and I should wait until the BMB, is the implication that they are expecting to find something worse as the cause?

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How do you find out if someone is a MPN specialist?

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Whereabout do you live? In London it’s Professor Harrison at Guy’s Hospital. There are also MPN specialists in other UK cities and I’m sure people on here will be able to inform you if you can give us your location. Just wanted to say though...optical migraines/pins and needles were certainly a symptom which led to my own diagnosis a couple of years ago!

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Hi Garstongal, I'm in North Yorkshire.

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I’m sure there must be some northern members in this group who can help. Meanwhile, check out the haematologists specialising in MPNs listed in the UK...

mpnforum.com/list-hem./

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Thanks for the list. Sadly all too far away from me.

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I can see that you are indeed some distance from an MPN specialist . If it were at all possible for you to travel to see one it could potentially make an enormous difference in terms of your confidence re diagnosis & treatment . The difference it has made for me was the difference between a roller skate & a Rolls Royce . I now feel absolutely safe in my life . See if you can get to an MPN forum & meet other MPNers & professionals - they can be game changers 😊 Wishing you well 👍

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Thanks for your comment, Annie. I'm intrigued to know what different treatment you got from a MPN specialist that you didn't get before. And how do you get to see one?

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Have sent you a private message on here 👍😊

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I would think you have been put on Hydroxy as a precaution due to your age, it may well be that things will alter treatment wise once you’ve had your biopsy, as long as you have regular blood tests ( probably monthly for now ) you’ll be ok as it’ll be closely monitored, make sure you ask them how often your bloods will be tested, I’ve been on Hydroxy for 20 years so don’t worry.

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Thanks. Yes, it's very early days.

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I even asked my go to give me blood test every 2 months apart from 2 monthly regular blood test to my haematologist, to monitor my kidney and liver etc as our medications are very toxic. Just in case, so I can keep track.

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Hello to you - I agree with your reply from chemo01 in that if you were diagnosed ET with JAK2 from the blood test and and are over 60 that will be why you’ve been put on hydroxy + aspirin (it seems to be pretty much a given that those are the criteria used by most haems) - I am also ET JAK2 and experienced many of the issues others have had ( pins and needles, numbness through legs and arms, fatigue - as in the ‘utter exhaustion’ - vision disruption) for me finally getting a diagnosis was just a relief!! - when I was put on aspirin only most of those symptoms stopped or were substantially reduced which leads me to think that regardless of platelet levels it’s the stickiness of the blood that causes some of the issues. Check out MPNvoice which gives loads of info and is an invaluable resource. Anne-Marie xx

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Hi amhann, thanks for that. I totally agree with you about the diagnosis being a relief - even though that sounds a weird thing to say! Yes, I was a little bit panicky about the cancer associations and other scary stuff about treatments etc, but at last I could stop feeling guilty about resting during the day and after a year or more of mystery we were finally reaching an answer. Yes, I've been on MPN Voice and try to avoid looking at other sites and getting totally mind-boggled! I still don't understand why the Haemo doesn't think the symptoms are ET or Hydroxy related though. 🤔All the best to you.

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Ocular migraines are normal with ET. Lots us have them...here's more info:

ncbi.nlm.nih.gov/m/pubmed/9...

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Hi blaablaa,

I've just been looking online to see what I could come up with regarding acknowledgement of symptoms. There seems to be lots of peer reviewed journals acknowledging these specific symptoms. For instance a quick Google search found this one regarding headaches and tingling extremities ncbi.nlm.nih.gov/pmc/articl... but there doesn't seem to be much around why haemos, are reluctant to attribute symptoms to ET. Anyone else know?

I too felt relief to have a diagnosis which explained the fatigue and numbness, after having been put on anti anxiety medication for the recurrent numbness in my foot, despite it appearing at times, when I was really relaxed. The aspirin therapy seems to have greatly reduced this. I'm very aware it is scary having the cancer word bandied about, I was told by my doctors receptionist who didn't realise I had no clue that was even a possibility. I wouldn't jump to conclusions at this point about something worse. Not, obviously, that it isn't possible but your symptoms certainly would fit with ET going by the experiences of many people on this site. I'm aware that's very easy to say however! One last thing to say about this site is that lots of people on here have had this disease for years and still have a good quality of life. Plus of course there will be lots of people who don't post here much or at all because they experience very mild symptoms. It's, a very variable disease but by no means a death sentence. If I'm going to have cancer at this, stage there are worse ones to have! Let us know how the bmb goes!

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Thanks very much for the link and for your sympathetic words. I've just seen your post from 2 months ago on your profile page and we pretty much mirror each other! (Except for age!) I shall go back and read it all and the comments. It's very encouraging to have people to talk to here. Thanks 😊

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PS. Forgot to say...that's appalling, being told by a doctor's receptionist.

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Hello. I was diagnosed with ET Jak2 positive at age 52. I was having bad headaches for months. I went to my gp and he took some tests. My platelets were about 600,000. He referred me to a hematologist. I had a bmb and they confirmed ET. He immediately started me on hydroxy. Here in the US I think they are more aggressive with treatment.

Anyway, my numbers went down to the 300,000’s and I stopped taking the meds on my own and not long after I ended up in the hospital for 3 days with a blood clot in my spleen; platelets at 800,000. That was 11 years ago and I have been on medication ever since but my numbers have never been “normal” again. Fatigue is definitely a big part of ET but I always forced myself to push through it somehow. Good luck with your bmb. Let us know what they’re find.

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Hi and welcome.

Your age (67) and being Jak2+ are two high risk factors for thrombotic events, hence treatment with hydroxycarbamide.

My story is similar to your own; platelet count only 500 and stable at diagnosis of ET. However, age 60 and Jak2+ meets the WHO criteria for ‘High Risk.’ I was ‘advised’ to begin treatment with hydroxy. It is a personal choice - but after some discussion I decided to heed the haematologists advise and begin treatment with low dose hydroxy (500mg) Monday to Friday, weekends free. I have been on the same dose of hydroxy for three years with no side effects; my platelets remain stable in the low 300s.

By the way, I experienced dizzy spells and scintillating scotoma attacks with platelets at 500. I thought it was age related. I don’t experience this anymore. So, in my opinion these symptoms were circulatory disturbances related to ET. I believe by commencing treatment I have now lessened my risk for thrombotic events.

Mary

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Very helpful, thanks. 👍🏻

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Hi I was diagnosed yesterday with ET after many trips to Gp over the past year with symptoms. Finally haematology referral came and things got moving. JAK2+ was a shock but at least I have a diagnosis and a plan. Not being seen again for 4 weeks though which does leave me very anxious and worried about potential blood clots! Apparently I have had high platelets (500-650) for 10 years. Didn’t know as previous Gp wasn’t concerned. I have since changed gp as I knew something was wrong with me and wasn’t happy with their care. Only came to light this year when I repeatedly went to gp with severe all over body itching and they finally referred me. Now haematologist can’t say if I have had ET all this time or whether it’s more recent as have never been previously tested. Been up all night researching ... feeling very anxious of what lies ahead. Need to start treatment ASAP! Glad I stumbled across this forum as it’s comforting to know there are others out there going through the same thing. Wishing you all the best and good health.

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Wishing you all the best too. Very similar story, except I have been spared the itching (so far!).

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Hello and welcome to our forum. If you haven't already had a look at our website I would recommend that you do, mpnvoice.org.uk, it has lots of very useful information on there which might help you understand more about your ET. I would also recommend that in the next few weeks before you see your haematologist again that you write down any questions you have about your treatment plan; medication; symptoms etc, as it does help to keep you focused when you are in the consultation, and if you can, take someone with you, as very often another person will think of different questions and will also often remember some answers that you might not. Kind regards, Maz

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Thank you, Maz, for your welcome and good advice.

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Thank you! This is a great comfort to me as it’s scary being only recently diagnosed and I can see there is much positivity and hope out there, need to send that in my direction, I will be ok, won’t I ?

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Of course you will! You are about where I was a week ago - the shock waves do die down and then you just get on with it. I couldn't even speak about it for several days without getting choked up, but when you consider that actually we've probably been walking around with this condition for years and nothing awful happened, it's just great that it's been discovered and were being helped. The waiting times are difficult but they do pass. 😊

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I was only diagnosed with same a few months ago. Best thing ever knowing I can share my journey with others on this amazing group. I start treatment (peg Interferon) when I get back from my holiday. I know I can share experiences with others here which really is a great support. Look forward to sharing my journey with you👍

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Forgot to say I also have 3.5 cm lesion on my spleen. Not cancerous just blood vessels they say! 6 monthly MRI checks to monitor so that’s a blessing. Just want to start treatment now to lower platelets and I will feel happier living with this. It’s good to have this forum as it is all so new to me. Will post more once I begin treatment.

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Sorry to hear you have extra problems, Redsab. It seems unfair that you had a diagnosis but no treatment yet!

Yes, it certainly is good to be able to share with others who understand and can give so much help and encouragement. This has been my first step on here and it's already been a help. I'm sure I'll be sticking around for a while!

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I also do the same as Lifam - there is a whole other ‘me’ attached to my platelets that don’t get covered by haems - so I do the ET stuff at the hospital + go to my GP (was every quarter, now every 6 months) and get bloods checked for cholesterol, liver + kidney function, vit D + B12 it keeps them in the loop and gives me peace of mind that I’m doing all I can to ‘manage’ my risk. xx

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Hello and welcome to the forum, I am glad that you have found us all and that you have also been reading the information on our website. It is a very scary time when you are first diagnosed and also having to start treatment, it can take quite a while to understand what it is all about, so any questions you have, please ask, we will all do our best to answer them for you. Kind regards, Maz

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