So been to see haematologist today
Pointless exercise- all bloods normal but jak2 mutation still outstanding. He said if its essential thrombocytosis I will need aspirin and not to worry? I honestly am so upset
So been to see haematologist today
Pointless exercise- all bloods normal but jak2 mutation still outstanding. He said if its essential thrombocytosis I will need aspirin and not to worry? I honestly am so upset
The diagnosis journey is sometimes a difficult one. Do you have any symptoms your GP could help elevate? What is most upsetting for you? Sending you support
I have leg cramps sometimes and I hear my heart pound in my ear not sure if it's related. I am upset re the future 5 percent chance et progressing to other disorders and possibly risk of clots uncertain about the future. He felt lymph nodes and spleen all normal but he is requesting an ultrasound
Hi Irishgal again, I have had all the same symptoms. The heartbeat was what took me to the GP initially, and he said it might indicate anaemia. I just thought that was the case for ages, until I was diagnosed. I had had the ultrasound (everyone does) and all my organs were normal, so I was very happy about that and went home and put myself on the organ donation register. I have since learned that if you have MDS/MPN you can't donate, so now have come off it. My haematologist talked about end of life and palliative care blah blah, but my bloods are not far outside the normal range and I am LOW RISK. You sound very similar to me and you should definitely ask what is your risk of progressing to leukemia. Aspirin helps against possible clots. Stop worrying.
I am sorry your diagnosis is taking so long. Mine took from November to last June, and I think I could have been diagnosed three months earlier, but was seen by a junior doctor who seemed only interested in displaying her knowledge and didn't give me the bottom line. I'm not saying I don't worry, but I'm a carer and things are getting hard for me to cope with in that respect, especially when I get fatigued. But I know lots of people from two support groups I attend, and most of them are above the age of 75! Hope you are getting some support at home because if you aren't, that's the hardest part of it.
Have you got your appointment yet? If not, you should badger the hospital for it.
Maggie
Yes I am waiting an ultrasound
Next appoint 10 th feb would have been longer but he has slotted me in due to anxiety. He said if jak2 negative he will do bone marrow so dont know what they are looking at then. He said people have 5 percent chance of lukemia. He said most people have normal life expectancy but am 32 so that worries me
You are going through the same mill we all go through - multiple blood tests, ultrasound, and then bone marrow test. I wasn't ever told what they were looking for. Then when I got diagnosis and prognosis of ten years, I was shocked to say the least but I have since learned that prognosis is based on statistics and the statistics do not really predict anything. So take your aspirin and get on with your life. If you don't stop worrying you might have something else to see the doctor about! I don't know why you are worried about being 32. I'm a young 75 expecting to live another 25 years.
10 year prognosis my doctor says near normal life expectancy
They have not prescribed aspirin yet
Yes but that ten-year prognosis is not reliable because the statistics that are behind it are not reliable. They are based on a median of people some years ago who have been diagnosed etc but it's early days. I was given that ten year prognosis but now I don't think about it much, and that's not because many people - with or without a diagnosis - are not going to live as long as that anyway, but because no-one takes it seriously. In my case, I have no idea whether I have been tested for JAK2, and there are other gene mutations that we could have. If you don't mind my asking, what symptom took you to the doctor in the first place?
Hi Maggie, sorry to but in but you say you are 75 but at what age were you diagnosed? I think the more years you have an MPN the more chance it has to progress. Average age of diagnosis for PV for example is 60 years. So maybe after 30 years you could've been at the end of life anyway. Thats why its hard to predict.
Yes this is my worry
Hi, try not to worry too much. I was diagnosed with ET in 2016 at 43 years old with platelets in the mid 800s. I take 75mg Aspirin daily which you can buy in most supermarkets very cheap. After a year diagnosis switched to PV due to rising red cell count. I still feel exactly the same. Symptoms are few and far between but the fatigue is always there. You get used to your new normal. I wouldn't dwell on the prognosis thing too much, after all none of us know how much time we have left. All the more reason to carry on with life the best way you can and enjoy as much as possible.
I know its hard to get your head around at first, but thats what this group is for... we're all here to support each other. X
Hi Rob, I was diagnosed last June after six months of blood tests and bmb. I don't know how long I've had thrombocytosis and MDS but my GP insists that because I had a blood test for something else about three years ago, and it didn't show up then, I can't have had it very long. Average age for MDS/MPN is 70. I have already well outlived my parents who both died at 67, am basically healthy and the ultrasound showed my organs as normal, so I had high hopes of reaching the century. The thing that bugs me is that I have so much to organise before I die and haven't the energy or motivation to do it. Having said that, I had already put a funeral plan in place and made a will before I was diagnosed, but I need to change the will.
I am low risk and on watch and wait, so I guess it's a slowly progressing thing that just needs monitoring. Compared to a lot of people here, I consider myself lucky.
If all your bloods are normal that's a good sign .
The pounding in your head is probably stress related stress can cause multiple things. I'd be more worried if my bloods were out of range!
You need to take the blood results as a positive.
So are you waiting for the jak2 result to come back .
Tracey
Yes waiting for jak2 but its bound to be positive. Haematologist wont even give me any indication
I wouldn't think it would be positive as your bloods are normal .
Have you got a lot of symptoms?
Sorry platelets are 550
Other bloods normal
I don't know sometimes leg cramps and hearing heart pound in my ear?
Awe right.
The pounding in your head is probably stress my husband gets this when he's stressed out at work.
What should a woman's platelets be ?
Really? As I have been worried about that too
Max is 450
Try not to worry too much.
I read all kinds online when my husband was diagnosed it made me in and in all he's had a blood cancer for 7 years now and our life hasn't changed he still works we still go on holiday etc.
Life expectancy is rubbish what you read on Google medication has come along way now.
Tracey
Thank u am so upset am 32 could be facing this diagnosis cant afford not to work
I totally understand my husband was 42 and he can't afford to stop work his pv has progressed to MF it's a worry but we try not to think about it and focus on the good things .
In all honesty my husband had two really bad years before going on ruxolitanib he was absolutely on his knees with exhaustion we were both so worried but soon as he got ruxolitanib within two weeks we noticed a massive difference .
So we are happy with the results his bloods are nearly all in normal range so happy days.
He had counselling and the lady said look at this as a positive it's not a terminal cancer and it can be managed.
Tracey
Hi Irishgal,
Think I'm similar to you (I went to the GP with pounding pulse) except for my age (75) and high platelets, but JAC2 hasn't been mentioned to me. I've just read about it. I am wondering why the medics are making such a deal of this with you, while keeping you waiting for ages. My platelets are similar to yours but, of course, I have the other side of the coin as well - low red blood cells because some are not maturing as they should, so when they go into circulation, I don't get the oxygen I need.
Like a pounding In your ear? I dont know i have waited since October to get seen and just got seen last week am angry and fed up
Yes, exactly that. And I absolutely get what you are going through, except that no-one told me they were looking for anything sinister. I thought, well if I have anaemia, they can just give me iron tablets.
When I went for the bone marrow test, I asked about it and the nurse said I might have sticky blood and they could prescribe a small amount of aspirin. If the normone in the kidneys wasn't producing a particular hormone, they could treat that. After that I had an appointment that I believe was supposed to be a diagnosis but was just a young doctor proving to the para-medic who was sitting in, how much she knew. The words cancer or leukaemia were never mentioned. I was told I would have another appointment in three months, that never happened until I phoned up, and I really believed that whatever I had was not serious - perhaps I was wasting their time. Then the haematologist asked me what I understood of what I had been told, and started talking about how I couldn't have any treatment because of my age and the overlap disorder. eol and palliative care - all this without any support (no-one to accompany me) and I had to drive 25 miles home while trying to take it all in, especially a prognosis of ten years.
Since then, my GP has poo poohed the 10 years prognosis, saying she has known "loads" of people with MDS (the average per GP in a life time is 2!), and I have, in fact been offered a blood transfusion which I turned down. So mixed messages.
I feel angry with you. You should not have to wait so long to hear on the one hand, that you have nothing at all to worry about, and on the other, that you have a gene mutation that might need treating. Still, we are nearly at the end of January, and then only another week! We will all be thinking of you.
Thank you. The doctor has said its 50/50 whether its reactive or et he couldn't say. I dont know why the test result for jak2 takes so long. Remind me your diagnosis again x
MDS - in my case, that's refractory anaemia with ring sideroblasts and MPN - in my case, that's thrombocytosis. I haven't been told anything else, and I get the impression that if I ask my Macmillan nurse anything, she really has to do some research. It is only since my last appointment that I have started to be given my blood counts which I write down on a template from MDS online. Just taking .75 mg aspirin. Diagnosed in June. Five days later, slipped a disc, so on top of OA, I have pain which is probably not at all related to my diagnosis. I also have daily palpitations.
Sorry to hear. My heartbeat in ear happens when I get up from lying down
Why be sorry? I don't get the impression that this is all that serious. My heartbeat in ear happens when I lie down. It sounds like an army marching through snow, although since my last appointment, when she said I should see my GP about it(!) because it might be due to something else, it has quietened down quite a bit. It doesn't keep me awake any more.
Have you Googled Is JAK2 sinister? you being a nurse, might get more out of it than I did!
"JAK2 Mutation Analysis Test
A JAK2 Mutational Analysis is usually recommended when a physician suspects a myeloproliferative disorder. In order to perform the JAK2 mutation test, blood sample is required, which is drawn using a syringe inserted into a superficial vein of the arm. The JAK2 mutation test is typically ordered as a follow-up test if a person has a significantly increased hemoglobin and/or platelet count and the health care provider suspects that the person may have an MPN.
Such an analysis is only helpful in providing information in both treatment and prognosis of a myeloproliferative disorder.The presence of a JAK2 mutation helps a healthcare provider make a definitive diagnosis of MPN (PV, ET or PMF). But no worries, a positive JAK2 Mutational Test does not mean that an individual is sick or will get sick. It may be only an indication of future development of polycythemia vera, or other forms of myeloproliferative disorders. But only thing that you have to take care is close follow-up with a healthcare provider."
I hope this will stop you worrying!
I was diagnosed with essential thrombocytosis in 2016. I had bone marrow biopsy and I don't have any mutations. My jak2 and all of that has remained negative.
Also I should say I am 31 and was diagnosed at 24-25
Sounds like a triple-negative MPN - ET. If you are interested, there is research on this. Here is one article .ncbi.nlm.nih.gov/pmc/articl... .
You may also find the MPN Molecular Biology presentation to be of interest.
mpninfo.org/conferences/201...
I expect at some point the more rare mutations that are simply unknown at this point will become part of the assessment process. Ultimately triple-negative is really "we don't have a test for that yet." Part of why it is so important to support basic research into MPNs.
All the best.
Anyone else on here triple negative?
Not diagnosed with ET, but potentially triple-negative. Mildly elevated platelets for 10 years (since age 20). All my driver mutations came back negative.
What were your platelets when you were diagnosed, and what are they now?
They were in the 600,000 range. Went up to millions. Was on hydroxurea for a few years. Had my third pregnancy and platelets went down on their own gradually after discontinuing the meds for pregnancy. Now almost 2 years later with only baby aspirin they are in the 400s
Do you have any symptoms?
No I am asymptomatic. With exception of one reading of 495 (likely attributed to the stress of being told I likely have ET), my platelets have never been over 455. Have been stable between 430 and 450 since 2011. Had a reading of 380 in 2008, so hard to tell if that was a jump between 2008 and 2011 or if they were just as high back then and just part of normal fluctuation.
Why are you upset? He told you not to worry and if you did have it you would only need aspirin. Do you actually want ET? Do you want a reason to worry? You got good news and you are upset...I don't get it.
I dont think it's good news I just think other tests are normal and jak2 test still outstanding so its bound to be that.
Why is all your blood counts and all other tests normal not good news? I Would be very relieved about it! Your platelets have only ever been slightly over the top end of normal, now your counts are in the normal range and all tests fine you should be happy. Some of us on the forum had a difficult pathway to being diagnosed. After a small stroke (the first one) I was eventually sent to the Haematology department were they looked over my bloods for the last few months and the Haematologist immediately in front of me got on the phone to ask for an emergency appointment for a Bmb to be done as soon as possible! Within in 2 days I arrived at the designated ward and on entering their were people there with no hair or barely any attached to intravenous drips obviously receiving chemotherapy. The confortable surroundings and the pictures on the wall couldn't hide the fact it was a cancer ward! A nurse came and gently spoke to me about the proceedure and it was then I learnt they suspected Leukemia! I was there by myself and had a 11yr old daughter at school! To cut a long story short when I got the test results of Et jak2,even though it was frightening in the beginning it was better than being diagnosed with leukemia. Their was a very brave lady who recently passed away on this forum who always had a smile or funny or fighting quote. I'm not dismissing your worries but sometimes you have to say, their for the grace of god go I. You have to put this behind you and start enjoying life and living or your life will be totally taken over by this. I wish you well. Atb,tina.🤗
I was worried as the result that was normal was less sinister things so I would have hoped it would be something like iron related. I don't understand if am negative for jak2 then what? I know I have to get on with life but how these thoughts are always there I cry all the time
Irishgirl 12. We all wish you well but it is difficult to understand what you are anxious about? If your most recent blood tests are all normal and you have no symptoms then there is nothing to be concerned about.
Are your concerns based on some elevated platelet results at the end of last year? Platelet numbers can be increased, temporarily, for lots of reasons including illness and injury. The fact that they have gone up and then back down suggests that your body is working normally.
You are making yourself unwell. Find someone or something to distract you.
Yes the other blood tests normal hence rules out reactive
I' m confused. What are your platelet levels now?
Your posting yesterday suggested all your results were normal.
This is very good advice, Tina.
I have no intention on letting my PV diagnosis overrun my life. I told my closest friend yesterday about what was going on with me. I wanted her to know why I had been so tired and unengaged lately. We talked about things, but then pivoted on to our usual conversations and were laughing our heads off in no time. I'm not even going to tell most people as I don't want this to be the focus of my life. My husband, daughter, pets, and friends are the focus.
Your bloods are a key indicator .
Like my husband's heamatactit level and platelets were so high which it lead them to test for pv and it came back positive!
Then they tested the jak 2 that came back positive ! So in all this was a worry!
And to top it off he's now got MF working full time and dealing with the unknown wether this blood cancer will progress to lukaemia .
But in all his bloods remain stable and we pray from month to month they remain stable.
Tracey
If am jak2 positive does that mean et or can it be mf
It is upsetting having tests and wondering . When I first found out I have JAK 2 I played positive stuff on iTunes to help my buzzing mind stop . Really helped me sleep and relax . X
If you come back as Jak2 + that is the standard treatment & response from a Haemo because actually if your bloods are normal then you don't need to worry, as difficult as it is. Unfortunately you have googled so much already as you know what they are testing for, we were fortunate not to know what they were testing for so we were not worried waiting on test results. And at diagnosis we pretty much had the same response just told that once hubby's platelets rose from 890 to 1000 he'd start treatment. It was a complete shock to us as nothing was mentioned at testing stage so we just thought it was a genetic condition that might need aspirin - that was what we'd been told & no name of condition mentioned. I'd been concerned about leukemia but as nothing was said we left first appointment feeling reassured. Hubbys very symptomatic but fortunately does not need meds yet. Aspirin will help with the stickiness of blood which reduces risk of clots so Haemo will keep you on that if levels are OK & you are Jak2. In regards to progression, no one knows, no Haemo can determine your liklihood so actually you really can't worry about it. None of us can predict life, you have to live everyday, make the most of life, don't put things off. My sister had breast cancer a few years ago & told me that, hubby's diagnosis made us push to do more of the things we wanted to do & my sister in law was diagnosed with lung cancer in the summer so we are all going to do some amazing things this year. As hard as it may seem, you have to live your life and not worry, otherwise you won't have a life and then what's the point. None of us no what will happen. I'm as likely to be diagnosed with something as hubby is to progress so go have fun, achieve the things you want to in life
Wise words indeed. Though that first question of an MPN is pretty scary irishgal12 and I do understand a lack of certainty can cause fear. My lovely hematologist explained it v well on Mon when he said that the rates of progression are measured in years and are slight for most of us, yet because even a small risk exists, he will monitor me closely. Compared to all the other cancers I could have been diagnosed with (lost my dad to stomach cancer, uncle to lung cancer & aunt to pancreatic cancer; mother-in-law to breast cancer & brother-in-law to leukemia) I feel like I'm SOO fortunate and have been given a new lease of life. I'm determined to live well, be active and healthy so that I can hopefully stave off starting interferon for as long as possible (platelets at 900 now & haem hoping to wait until they're over 1500 as thankfully, I'm young & lower risk).
Everyone's journey is different but I wish you peace of mind soon irishgal12 and much love to you all chaz1, I hope the time with your sister-in-law & family is the best it can be. Best wishes to her.
Órla
Stop worrying. Platelet counts vary over time and can be increased by your body reacting to infections (how are your teeth?) or injury.
In previous posts you mention that you had a leg injury before your slightly elevated platelet count. This could explain the slighly elevated results you've mentioned.
If your latest blood tests are normal and you have no symptoms then you are not ill.
Get on with living and stop searching the internet for a diagnosis.
All the evidence from your postings indicate that your diagnosis is that you are a healthy young woman with an overactive imagination.
I feel for you. It's the not understanding! I have been there and got the t-shirt!
Really though, if you have no symptoms, need nothing more than asprin, Rejoice! Because in the future if any changes occur the doctors won't be scratching their heads as to what to do, they will thoroughly check your bloods. It's win win for you 😀🤗
Don't worry, be happy.
No point in worrying about things that worry won’t help.
See what your Jak2 test comes back with and take your next steps from there.
Oh right. I get them every day as well but I think my heart beat has quietened down. That is after my haematologist said that if I was still getting that I should see my GP! Well, I haven't been treated for it, unless aspirin helps, so don't understand why I should bother my GP. She said that it might be caused by something else! So as my heart is not keeping me awake at night any longer, perhaps the blood thinning of the aspirin is working on that symptom. I am also less anxious. I think most of us get palpitations and it's normal, I assume - just one of those things.
Do. Do give up worrying and leave the worrying to the medics.
Are you saying your platelets were within normal range this time? If so, there’s a strong possibility that you may not have an MPN.
Waiting for a definitive diagnosis can be a lengthy procedure. Obviously, not the best scenario for your anxiety. Your haematologist sounds thorough, and you should take some consolation from that. My ET diagnosis took around six months from the first random blood test revealing raised platelets.
Are you receiving help for your anxiety?
I see. I was a bit confused, as you said your bloods were normal. So, 550 is above range, but not by too much.
I will say, it’s quite hard to think and interpret information in a rational manner when you’re anxious. You tend to only zoom in on the negative. I say this as someone who has experienced anxiety in the past. From experience, I would advise you to stop googling for the interim. A lot of google information on MPNs is simply wrong or historically irrelevant. Worrying will not change the outcome, what ever that is.
‘If’ you are diagnosed with ET, we’ll give you all the support you need on this site. You will be able to ask Maz for a ‘buddy.’ This is someone with the same diagnosis and roughly around the same age as yourself that can support and converse with you.
Hope you have support. X
I was diagnosed with ET over 30 years ago. It progressed to PV about 7 years ago. Found out along the way that I am also JAK2 positive, with a 25% JAK2 mutant allele burden. I am fortunate in that my manifestation of the progressing MPN is still relatively indolent. I have never had a single incident of thrombosis. Have had mild splenomegaly, but never enough for it to be a problem. The biggest MPN problem I have had was Stage 1 hypertension (135/95 with some really big spikes). Once my erythrocytes were under control from the phlebotomy, my BP returned to normal (115/75). I have actually had more trouble with the systemic inflammation issues that come from the JAK2-driven increase in inflammatory cytokines. That is something I am finding ways to treat on an on-going basis.
As others have mentioned, don't stress about the statistics. They apply to broad numbers of people with ET, not necessarily to you specifically. If you dive deeper into the research, you will find that the more nuanced longevity research divides out risk groups from low to high, with different predictions regarding the outcomes. So do look at this data as a general prediction for groups of people, not your individual prognosis. One of our MPN brethren has previously posted this risk calculator cancer.sanger.ac.uk/mpn-mul... . Can't really vouch for its accuracy, but it does seem to ask the right kinds of risk-questions and is interesting if nothing else.
Regardless - do try to take a big chill-pill - or conversely go to the pub for a nice pint (I personally prefer a nice balanced amber ale). I will lift one on your behalf! All the best to you.
.
What is the difference between thrombocythemia and thrombocytes please. Can you tell me??
Thrombocytes is just another word for platelets. Thrombocythemia is when the bone marrow makes too many platelets.
As you have had good blood results, it really seems that your problem is mainly anxiety. Perhaps you could go back to your doctor and discuss this. Your anxiety medication may need to be changed, or perhaps a more intense form of therapy.
Hi, I was diagnosed with ET at end of Oct ‘19. It took. My heamo 5 months to diagnose and on two separate occasions before the diagnosis she said she didn’t think it was Cancer. I also have several other conditions which have come to light since. My platelets were over 1000 each time I had bloods taken (1x 4weeks). I had loads of tests, MRI, CT scans xray’s, spleen, liver scans and BMB. Once diagnosed I was immediately put on Aspirin and Hydroxycarbonide 1000mg day. I feel as though I’ve had this for a long time as I have also suffered with migraine for the past 40 years. Since starting meds though I no longer get any headaches whatsoever! This is phenomenal for me and a huge relief. I haven’t seen much mentioned about headaches on here? The main symptom for me now is fatigue and shortness of breath, numbness/tingling in my toes & feet and also pain in back/chest which is probably not related to ET, I can deal with these. Initially I was not happy about being on A chemo drug but I have to say my quality of life is much better. It’s just difficult now self isolating as I can’t get out and walk although I fully understand why and am in total support. But I’d just got to a point that I felt I had the energy to exercise. I’m also very much an advocate for a healthy diet. Initially I felt really unwell on Hydro but I came up with a ‘tonic’ of Fresh ginger/turmeric/pineapple and lemon with hemp oil and black pepper. This helped against the nausea and also with the other symptoms I was experiencing . I also have one week on one week off with a green juice I make myself.....this helps with energy levels. Anyway, just wanted to say that it is scary when you don’t know what’s happening but your body is telling you something is not right so I understand how you feel. There’s a guy on here that says that quote about the ‘squeaky wheel’, keep on asking questions and when you know what you’re dealing with make a positive commitment to do what you can to feel better, take care of yourself and I hope you get some results soon. Elleuno.