Hi everyone here I am glad to be a member of this MPN Voice I really like to hear others too suffering from this blood disease thrombocytosis I have high platelets count.And I would like to hear other patients who has this kind of disorder since this is a rare blood disease.
Thrombocytosis: Hi everyone here I am glad to be a... - MPN Voice
Thrombocytosis
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grgracey
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Hi grgracey,
Welcome to the forum.
Have you been diagnosed with ET? I have ET, diagnosed in 2016. I am fairly lucky, as I don’t suffer many symptoms; a bit of fatigue now and again and I bruise easily, but that’s about it.
Mary
Hello Mary nice to meet you and thanks for the reply...what are your meds now? I can't sleep during day time.I deided to take a sleeping tablet. But I am afraid if I will be dependent on it. This is really a hard blood disease and the meds makes me depressed and wanted to end life. But I have to respect life though since it is God given gift to me.
Hi,
I take 500 mg (1 tablet) of hydroxycarbamide four times a week, also daily aspirin. My platelets are in the low 300s.
Sorry to hear about your significant depressive response to meds. Have you tried any other meds?
What symptoms do you have?
So fatigue and all my muscles seems so heavy when I walk sometimes seems I am at the clouds walking like an austraunout and very weird feelings. Seems I amm not a normal person anymore. The way I feel and think myself almost can't do things. Very hard to focus. I will going to have the bone marrow biopsy so afraid I am so scared about bone marrow test. I have anxiety. But I have the symptoms of the essential thrombocytosis like light headedness, fatigue,shortness of breath sometimes and always high platelets.
Maybe I will die with this disease. Very hard to handle.
Hi and welcome to forum. I was diagnosed in 2017 with ET CALR 2 I also remember having similar feelings as you are now going through. I would say don't give up, although it's rare there is a good amount of research happening and you don't have to think of ET as a terminal disease. I take aspirin every day and 45mcg of pegasys interferon every three weeks.
Yes there are side effects but once you go through the acceptance process that this is what you can and can't do anymore it does become much easier to deal with. To be honest the bone marrow biopsy doesn't hurt I was chatting to a nurse to take my mind off the tugging and pulling and to be honest the local anesthetic injection hurt the most.
The good thing about having the BM biopsy is that it gives you a starting point for the future my consultant in Yorkshire didn't want me to have one but had no problem when I said I want one.
If you haven't already found it go on the MPN voice website as they have the latest upto date information.
All the best Alastair
Thank you for the reply I am so scared of having stroke I am really depressed with my meds right now. This month maybe Ill have the courage to go with the bone marrow biopsy. I would like to have to have more information regarding this rare disease. It gives me the stress all the time.
Hello 👋 I was diagnosed 2016 with ET ..... the bone marrow biopsy was really nothing like I had heard .... it truly was over so fast and painless ... but uncomfortable after for a few days ....I take hydroxicarbomide 3x week ..life is still good and worth living ... just have to pace yourself and look after yourself and realize we are all suffering on some level but we go on ... with support and love from our team and each other ...... Lainie x
Wow! Nice one how I love to live a normal life ..so that I can still work and earn and support myself. Life is hard here and I am still single at this age 35 I have no one to rely on. I have to work and live. But this kind of disease is affecting me alot its hard to focus on things. Like I am teacher elementary hard for me to focus on my work decided to leave for awhile and hoping that I can find the right medication that fits for me. I think these medications really makes me green feeling all the time. This year maybe I have to undergo bone marrow biopsy just need to save fund for it.
Hi, grgracey,
I’ve had 2 bone marrow biopsies over the years. The first one was at age 52 in 2008 in the doctor’s office. I was nervous, too, but it only took a few minutes and it wasn’t bad at all. I was diagnosed with ET Jak2 at the time. My second one was in the hospital this past September. It was a bit uncomfortable and it took a couple of days to feel better. I was then diagnosed with Myelofibrosis. So you see I’ve been dealing with ET for a long time.
I also was a teacher in my younger days and experienced the same things you were talking about: brain fog, fatigue, heaviness in my legs, etc. I was told I had fibromyalgia. I eventually had to leave teaching in my early 40’s. I wonder now if I was misdiagnosed way back then.
Please try not to let this disease get the better of you. There’s been a ton of research over the years and new treatments that weren’t available back then.
I wish you the best in your mpn journey.
Hi grgracey,
Welcome. I was diagnosed with ET 8 months ago after Bone Marrow Biopsy, have been on 500mg HU daily and clopidogrel because my stomach cannot tolerate aspirin. Platelet count has been with normal range since, between 250/350. Since Xmas I am allowed to take HU only six days a week, hope will be able to have even less in future. Only little side effects here and there from the medication but do not affect my daily life at this stage.
Hi I’m new to HU and like you have been put on 500mg daily can you tell me when to expect any side effects I have only been on it 2 days so I am bracing myself also do u feel better taking it thanks in advance jackie
chemocare.com/chemotherapy/...
This link gives you all information about HU including all side effects.
Everyone response to it differently, some people been on it for years and no side effects yet some can be affected a great deal. We both are on minimum dose. Also keep hydrated, keep active, on healthy diet e.g. idea of Mediterranean diet. Try to maintain good weight and cholesterol.
Hope you'll have more idea from the link above.x
Hi I also have ET but am also JAK2+ and am prescribed Pegasys, which I now dose fortnightly.
You're very lucky to have few symptoms. Have a great 2020. ATB Penelope
Hi! I have thrombocytosis as well but my platelets were only 560 when I had my blood test on 11th December. I had my consultants appointment yesterday and she said all my bloods were up compared to three months ago but "in the same ball park". I am classified as "low risk" but still have to keep going for blood tests and appointments every three to four months.
I also have RARS and when I asked her which was the most important, she was unable to answer. Perhaps it is al part of the same thing - not enough mature red blood cells and too many platelets. I was diagnosed in June after tests from the previous November. It seems that our MPN is just so rare that they can't tell us how it is likely to develop. I am only taking aspirin as no treatment is possible with this overlap condition. It is really good to meet someone similar. Last month I met someone with thrombocytosis who joined one of the support groups but didn't have a chance to talk to him. Are you any more knowledgeable about your condition than I am; I still feel pretty much in the dark.
Happy New Year, Maggie
Same with me I am like a blind person I am always in the dark and can't find some light. I am searching for a light but hard to find. So hard....
Hello ....I am not knowledgeable about my disease like you I am searching for light I have so many questions to ask for someone who has also this kind of blood disease. I am on hydroxyurea and clopedogril which gave a very hard punch of side effects but I need to take these since this will save my life but poor life condition since I am suffering from side effects. I am looking forward to change med I have to consult my doctor this coming January 7, 2020...I know how hard this kind of disease is ....really a struggle in life.
I sympathise with you, as you are clearly feeling bad not just because of the disease but because of your meds. I am only on aspirin and my symptoms are mild so far, and my consultant has no idea how this will progress and I'm thinking I should just forget it and get on with my life, such as it is.
I do hope you get an improvement in your medication next week.
Yeah ...me too my doctor don't know why I have this kind of disease. All I remembered is that I am working a lot and most often times came across with many problems in life. At a young age I helped my family already till the time I was the one solely the bread winner in the family. There are many times that is very hard to get some sleep because of the anxieties in life and the big responsibility that is on my shoulder I have to work to provide for my father and other younger brothers. It was very hard at first but I get to used to it untill I reached at this age of 35 and suddenly got my high platelets high which is not normal already getting higher and higher unstoppable until I went to the hema dr. and found out I have a cancer I can't accept it at first but there is nothing I can do. The cancer is in my body already and makes me panic and nervous all the time I thought I am just a normal healthy person but no I experienced symptoms already when I was hospitalized and until today I don't know If I can survive with this very hars to deal. Got me depressed everytime I take the meds hydroxyurea and clopedogril. But no other meds for this kind of disease makes me really really depressed. I am a bit happy to be with this site so that I can express what I feel. And able to read others experience too with this kind of disease.
I am sorry to hear your plight. It is my understanding that blood cancer does not spread to the organs. I was wondering how you can be receiving treatment without diagnosis. I guess in your case they can treat your symptoms. In that you have thrombocytosis, you do have a diagnosis. But you are so young, and in the midst of family life. I hope it works out for you.
Welcome to the club that no one wanted to join but we are all glad to be members of. This is a great place to get support understanding and access to information from a patient perspective.
I was diagnosed with ET over 30 years ago. It progresses to PV about 6 years ago. My variant is JAK2+ with a mutant allele burden of 25%. I have always been relatively symptom free - no incidents of thrombosis (DVTs, TIAs, etc.). I spent most of those 30 years on an aspirin-only regimen. I have had mild splenomegaly, but never enough for the enlargement to be an issue. Even with the apparent progression to PV, I still have a relatively indolent form of a MPN. I actually have more trouble with the systemic inflammation caused by the JAK2 mutation. In addition to driving hematopoiesis (production of blood cells) upwards, the JAK2 mutation can also drive up the production of inflammatory cytokines. These cytokines are thought to be responsible for many of the secondary symptoms people with MPNs experience.
As you star down this journey, it is really important to get educated about this condition. Many docs, even hematologists know relatively little about MPNs because of their rarity. Consultation with a true MPN-expert doc is really important. Here is a link to patient-recommended docs with MPN expertise mpnforum.com/list-hem./ . It is worth doing whatever is necessary to at least occasionally consult with one of these docs even if you cannot have them as your primary hematology provider.
Another thing to know is that we can each present with unique variants of a MPN. The standard treatment protocol may or may not be the right approach for you. Not only does our symptom burden vary, but so does our response to various medications and treatment interventions. Here is a very good presentation about individualized treatment by Dr. Ruben Mesa, one of the leading MPN experts youtube.com/watch?v=Y50S-Uz... . As a case-in-point - I am hydroxyurea-intolerant and aspirin makes me bleed too much. Despite being age 64 with PV, the right treatment approach for me is phlebotomy-only. That is not the "standard protocol."
I have learned one very important thing on my health journey (MPN, Neurofibromatosis - brain tumor, arrhythmia, Green laser PVP surgery, and most recently a bone tumor). Educated and assertive patients receive higher quality care. Passive patients do not. Please get educated about the condition you are facing and feel empowered to take charge of your own treatment. Do not allow dismay and fear rob you of the power you have to make a real difference in your own health. Most of us live long, productive and rich lives, even with ET. There may be challenges along the way but they can be dealt with.
All the best to you.
Don’t be too worried about the bmb I was dreading mine but it wasn’t so bad as I feared. Talk to your doctor about your feelings of depression. It’s a shock to be diagnosed with something like this and remember the people on this site will always be there for you xx
Hi grgracey,
I don't have ET. I have thrombocytosis, which is what I understood you to have. I believe essential thrombocytosis is different from thrombocytosis. I can't see that there is any difference but that is what my consultant says. Which one do you actually have? I am fairly recently diagnosed and I didn't come on this site to complain about my condition. I want more information. I know it's very rare but I can't be the only person here with MDS and thrombocytosis. There has to at least be more people than the average haematologist comes across in his/her career. We are the ones with the answers - not research!
Hi have you been diagnosed? Am waiting to see a haematologist with high platelets
I was diagnosed with MDS/MPN in June. The MPN consists of thrombocytosis (slightly high platelets) and I take aspirin for that. The MDS is refractory anaemia with ring sideroblasts (RARS). I am low risk, on Watch and Wait as it doesn't seem to be very serious at present. The future is just uncertain. What more can I say?
How do you cope am already anxious not coping at the thought of diagnosis and not even been diagnosed
It has taken a while to get my head round it, not least because it wasn't explained to me in such a way that I could rule out a lot of the aspects that I read about and which don't turn out to affect me. I do suffer from anxiety and it almost feels as if the anxiety is starting in my body, not my mind. I have difficulty sleeping. But I only went to the doctor with a loud pulse in my head constantly there in quiet moments, and was told that it was probably anaemia. I didn't realise that you don't have to be short of iron to be anaemic and it turned out to be a lot more complicated than that, but I don't know how long I have had MDS/MPN. I have fibromyalgia for years and always put down the fatigue as a symptom of that. On the one hand, my blood counts are not all that abnormal and on the other hand, it is a serious condition and I don't know how to respond to those conflicting ideas. I don't know how kind I should be to myself especially when those around me have no regard for it. I have been doing an awful lot of sudoku as a distraction! I have started to investigate mindfulness - not that I haven't some idea about it - but I think really going for ten minutes a day to thrash out who I am and how to look at my life is going to help everything. I am not just a person with an illness. I have other issues as well in my life, and I am sure you do too. I turned 75 on Xmas Eve and think I'm probably lucky to be in the low risk group but it's like the sword of Damocles hanging over my head and that is so difficult to put across to other people. You are soon going to have your tests; try not to worry until you get your diagnosis and take it from there. You may have a serious illness but there are treatments (not for me) and from going to support groups, I observe there are many people older than me who are living with the conditions (and there are so many variations and so much jargon - you wouldn't believe!) I look forward to hearing from you when you have had your tests. Good luck!
Maggie
Thank you. Funny you say that I have been hearing my pulse in my ears sometimes did they tell u that was linked to et
Hi irishgal12, my gp said it might indicate anaemia and for eight months that was all I knew. I have been told I have thrombocytosis NOT essential thrombocytosis, though I can't find out the difference. But i also have an MDS and osteoarthritis, which is how I found this site.
I see I may just have thrombocytosis
Hi Jackie,
Thanks for getting in touch. Yes, I have been suspicious about the links between FM and aspects if these blood disorders. I found a high strength cannabidoil helpful but am not taking it now. My FM seems to be in remission but I notice pain is more widespread in my body as I age and because I have osteoarthritis now I don't know what is what! You say you have ET; My haematologist told me I have thrombocytosis and when asking the nurse for clarification, I asked her if I had ET and she said No. I don't think she knew what I was getting at. Do you know whether there is any difference? (I'm not taking any meds for this, only 75 mg aspirin).
It is a great forum, isn't it? Maggie
Yes great forum I too have thrombocytosis and that jak2 I had aspirin for 3 years and now I’m 60 they’ve put me on hydrea and aspirin which to be honest I’m really scared of so reading positive reports is so helpful to me just found this article so they are the same thing.Essential thrombocythemia (ET) is one of a related group of blood cancers known as “myeloproliferative neoplasms” (MPNs) in which cells in the bone marrow that produce the blood cells develop and function abnormally. ET begins with one or more acquired changes (mutations) to the DNA of a single blood-forming cell. 😊
Hi Maggie just found this forum it’s great I have ET but what I found interesting about your post is you also have fibromyalgia I also have suffered with fibro for many years and I did a search and this can also be one of the symptoms of fibro along with the many more problems we have to live this I found this very interesting as a lot of the symptoms are also the same with fibro I am taking aspirin and 500mg of Hydrea daily I’m interested to see how I feel in a few weeks time as at the moment for my fibro I’m taking medicinal cannabis which helps me a lot thanks for the advice regards jackie
Interesting possible connections to fibromyalgia. I was diagnosed with fibromyalgia in my 30’s, arthritis in my 40’s, and ET when I was 52. 11 years later, I now have myelofibrosis. I recently read an article linking inflammatory conditions to cancer. I’ve also lead a very stressful life from age 22 which I believe played a part.
Yes I know this fibro has so many branches to it and yes I believe stress and trauma caused mine too I’ve had fibro for 19 yrs and they picked up E T 3 years ago what is myelofibrosis I’m 60 now and reading these comments is very helpful do you take hydrea for ET if so how did u get on thankyou
Yes, my doctor put me on hydroxy right away. Over the years, he’s tried anagrelide and jakafi, as well. Over a year ago I became Anemic and he couldn’t get my platelets under 700. I was sure I had progressed to MF but he didn’t think so. So I found an mpn specialist who did a second bmb, extensive blood tests, and I was right. She took me off of everything but hydroxy and put me on Fedratinib and and an injection of retacrit if my hemoglobin went below 10.2. After 3.5 months of weekly visits, last week my platelets were 454 and my hemoglobin was 10.9, which were amazing results for me. I’m finally feeling like my old self again and very hopeful.
Thanks Maggie ..yes I will be having my bone marrow biopsy tomorrow my big day...haha...very very nervous and anxious...😣
Hi Grgracey, I echo Alister’s post.
I felt like you and still do when meds not working. Are you in UK? If so contact Maz- mpnvoice.
Request a buddy.
I didn’t want one or be one but I’ll be yours- lol you need me!! 😂. If I’ve sold myself and you want me ask Maz to message me via this forum maybe she can use me. I’m not registered as a buddy.
Alternatively contact Macmillan. When I wanted to end my life they were brilliant.
You are not alone xxxxxxx
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