Hi am 32, female
Platlets over the years have always fluctuated my normal seems to he 450 454. Recently it was 571 6 week later 574
No symptoms
Waiting to see haematologist and am so worried I think I have et. Keep thinking if I need chemo I wont be able to work will be too sick
Hi try not to worry to much as ET can be managed and still live a good life ,I was diagnosed fourteen years ago with ET spent a few years worrying had very good specialist !
Best wishes
Thank you I guess I dont know how I'd cope knowing it's a cancer
O yes that was me 14years ago very scary no understanding of ET it is a blood cancer immature platelets can be managed with a drug tablet! Try not to read to much on it as that can be scary to much info may never happen enjoy life every day as it comes keep positive. Happy Christmas
I am 36, i strongly believe i have ET almost since 2003 but this year i have a diagnosis. I just take a baby aspirin.Not chemo at all. My platelets counts just above normal 380-500. I know how shocking is all this. I still try to come in terms with it. The only thing that i am afraid,is the odds of progressing to MF. Other than that, life expectancy is the same. Also there is always a chance that you have something reactive and not ET
Am hoping its reactive what was your count when diagnosed
My platelets counts were 446 when i was diagnosed. Just above normal. Also a slightly enlarged spleen. If i hadn't ask for a BMB, i would have not know till now that i have ET. My heam thought I don't have ET. He was surprised and told me that i was so lucky that i insisted on having bone marrow biopsy.
Mine is 571 so not much luck
Platelets counts can be very high also in reactive cases. I can totally understand how you feel with the thought of possible ET. What is the range of your counts all these years?
I had never heard of et until googled.
Over the years fluctuated sometimes 480 then repeated 450 normal seems to be 450 454. When higher in past I recall a reactive causes at the time
I see. So maybe this time is also reactive!. I hope so. What is your next move to find out more about it?
I have app 22nd jan for haematologist been waiting months
Your numbers are low. I was symptomatic with dizziness and "fog head" but when diagnosed platelets were over a million. Now around 500 with Hydroxy feel pretty much normal. Don't do what I did and try to figure it out on the computer. It's foolish and creates stress. I had a different cancer every day in my head. I was a mess. Find a good hematologist. Let him/her figure it out.
How does one know when they have “reactive causes”?
I'd like to know this too I hear et I'd rare
That's good life expectancy the same. Do u know can people have pregnancy with et
I have had 2 pregnancies,both successful. I have 2 babies. My big one is 3 and my little one almost 2 years old. So very resently!!I was on baby aspirin cause i had platelets counts 450-530 through my pregnancy. Now i know this was because of ET. My doctor suspected ET that time but couldn't confirm it without biopsy. I couldn't have biopsy while pregnant, because of pelvic pressure that is required.
That's good to know
I may not even have et
Just worried I wouldn't be able to have more children and if needed chemo drugs I'd be I'll all the time
There's lots of people on here who have had pregnancies whilst on medication .
All you question can be answered on here.
What I have learned to do is not panic and realise that every patient is different.
What medication works for one may not work for another, but there's a few alternatives.
You never know you may not have ET .
We had to wait from December 10th last year to Jan 22 to see the transplant team it was awful the wait .
The news when we got there wasn't as bad as we expected so we have relaxed about the transplant now.
My husband bloods are in range apart from his white cells but diet and stress can cause these to rise.
He's definitely suffering stress due to his stressful job!! His diet is all over stress eating .
So after Christmas we need to make big changes!
Take care and have a lovely Christmas
Yes
Easy said than done but don’t fret. My count has been between 700-900 for the past 18months and blood checks have just been moved to 6 monthly. I take baby aspirin and that’s it, no symptoms and do lots of exercise and lead a healthy life style whilst still enjoying some of less healthy things - everything in moderation. Don’t get hung up on it, I would expect chemo would be a long long way away for you. All is not lost, you’re in a unique club that none of us would have chosen but here we are and it’s time to say I love you world, Christmas is next week embrace it. It’s not going to be your last. Smile at the world and she smiles back. If you want to scream shout or just rant here’s the forum to allow you to do that. But I’ve found just being happy counts for a lot. As my wife’s nan used to say “plenty folk worse off than you!!”.
Wishing you and your family a very merry Christmas.
Thank you. It says it's a cancer is it? I dont understand its not like other cancers which spread
I wouldn't get stuck on the word cancer. But, the definition of cancer is: a disease caused by an uncontrolled division of abnormal cells in a part of the body. Some doctors still will not call ET cancer and it was known only as a disorder until 2013 and then the name changed from myeloproliferative disorder to myeloproliferative neoplasm.
I used to get angry when my mom wouldn't admit I had cancer and she would only call it a disorder. But 16 years later I'm still trucking along with no treatment either...so sometimes now I feel weird calling it cancer because how many cancers can you have with no treatment at all and still be alive decades later?
Yes I am getting hung up on cancer. I have severe health anxiety and I dont know how I will cope if told this. What were your platelet at diagnosis
My platelets were only 455k. And they haven't gotten over 550k in 16 years. My ET is not bad at all as far as numbers go.
That's good I thought et was diagnosed in higher numbers but obviously not. At the time of high platelets I had muscle injury but 6 week later crp normal and platelets still raised which worries me
I had other abnormalities in my bloodwork that pointed to a MPN. I had a high WBC count and a high hematocrit...so I had an elevation in all 3 cell lines. And I had several years history of abnormal results. It may make you feel better to know at your platelet count, even if you did have ET, almost no doctor would recommend treatment yet...except maybe aspirin.
I see my hematocrit slightly high but only by a point. I know but am a chronic worrier and would just worry about it progressing
The thought of my ET progressing does cross my mind sometimes. But for the most part I don't dwell on it. I guess my theory is worrying about something has no purpose...if it happens it happens and I will deal with it then. Until then I will enjoy my life as it is. But, I understand...everybody handles health problems differently.
I am worried sick and am not even diagnosed
Hopefully you don't have ET but if you do it may help you to join a support group or something like that. Living in a constant state of worry is no way to live. Try to distract yourself for the time being until you have further answers. ❤
Your posts are making me anxious!!! Please, I implore you to stop stressing. That's not good for anyone, least of all someone with a possible blood disorder. Your platelet count is not all that high - mine was 920K when diagnosed in 2001 at aged 26. I'm still alive 18 years later!!!! Also I was diagnosed with ET, a myeloproliferative DISORDER ...no cancer word. Thats only allocated in recent years to describe the overproduction of blood cells, as cancer is characterised by new accelerated cell growth. Calm down and don't worry unnecessarily. Wait for your diagnosis, then do your research....Dr Google is far from correct 100% of the time...
Karol
Hi,
it's always worrying the unknown.
Chemo sounds hurrendous as my husband had PV and was told he will have to go on hydroxy which is a chemo tablet it frightened the hell out of him.
After 3 years of taking aspirin he finally gave in and decided to go on the hydroxy as all the venesection he had was draining his iron and he was exhausted.
So he started hydroxy took it at 6pm and he had no side effects whatsoever.
He works full time and last year in December he was told after a bone marrow biopsy that his pv had progressed to MF myelofibrosis it absolutely wiped us off our feet he had to see the bone marrow transplant team. He's had all the transplant tests .
They said he's too fit and well for transplant and they have put him on ruxolitanib.
This has been brilliant he hasn't had no blood off since January he's nowhere near as exhausted. He's still working full time. We still go on holiday mind you our travel insurance has gone up a lot.
So in all after him being terrified of chemo tablets they have made his life more normal.
Please try not to worry and think positive that the medication will give you a better quality of life.
Google is the worst place to research .
This site is amazing as these are the people with information that suffer themselves.
The word chemo and cancer is daunting.
These blood cancers can be managed there's lots of new drugs coming and and lots available now.
Try to have a fantastic Christmas and just think you would rather be on medication than none at all.
Bigs hugs to you as I know how frightened you must feel.
If you have got ET then if you have critical illness your insurance may pay out.
I found this info on this site.
Maz is a great help she can send you leaflets out .
You take care
Tracey
I’ve taken comfort from your reply, it’s very frightening when you’re new to this.
Sorry to hear your situation
I worry about et and it progressing as am only 32
Honestly I know how you feel I really thought my world was torn apart when my husband was diagnosed in 2013 .
I can honestly say there's been no change in life apart from him being exhausted . We still go away and do everything we used to do so nothing has been spoilt. Only negative is the price of our holiday insurance 🙈🙈!
We visit the chemo ward and there is a lot worse cancers out there.
My husband had counselling and she told him be positive as you can still do everything and your cancer is under control.
Glad you have found comfort that's what this site is amazing for so many people who understand you.
Tracey
So worst case r u best claiming on life insurance or waiting incase things get worse
Claim on your critical illness policy if you have this . You should claim soon as you get a diagnosis if it is ET .
Tracey
Even if able to work
Yes.
If you took your mortgage protection insurance out with the critical illness cover then you can claim .
Did you take out critical illness cover?
Lots of people haven't took it out luckily we took it out .
Tracey
Hello and greetings from Fleetwood England.
So you have entered a new world of ET.
When you go to see your team, take some one with you.
The key word is definitive diagnosis. Primarily,there are many causes of raised platelets, your age and the fact that you have recently been pregnant is significant that in respect of huge changes in your immune system due to pregnancy takes a great hit.
The main comfort here is that you are being looked at.
We are with you on this site and you are not alone.
I am now 67 female have had St for 3years.
My platelets were 1000 500 at the beginning.
My treatment was Asprin and two tablets per day with no side effects.
I have 3monthly telephone consultations, no other symptoms and I keep fit do gym, boxing, and enjoy my life.
When I first was diagnosed I too thought my life was over, however this site taught me too become knowledgeable,
Your mind plays through some what if, scenarios and perhaps this is where you are at presently.
For you tactically wait and see, keep calm and carry on. My platelets are now down to 360 and have been like that for two years. I go on holidays both long and short hauls.
I wear spaceflight socks and stop the alcohol 48 hours before.
Stress is the worry So I do meditation and mindfulness.
This helps me.
No one person is the same we are all different.
Wish you well take care.
That's good to hear it seems most people continue normal life even with chemo drugs?
I have ETJAK2+ 63 years old. If my platelets were hovering around 500-600 I would be overjoyed. I am taking 10x500mg hydroxy per week which is a chemotherapy drug and I do not have any symptoms or any obvious side-effects from the drug. Rather than wasting energy in useless worrying about what may happen in future, instead look after your health now. Eat healthy, find out what foods are good for you. Take exercise, find out what exercise is good for you, but you are probably doing all this already. Then, if you progress to an MPN or anything else that comes with modern living, your symptoms will not be so severe.
Hi there.
‘Cancer’, ‘Chemo’ are big scary words that carry a huge amount of quite frankly terrifying baggage. MPNs like ET and PV are labelled ‘blood cancers’ simply because they involve some dodgy cell production. In reality the vast majority of MPNers live entirely normal lives for entirely normal lifespans.
You’re young, your platelet counts are (relatively) low, it sounds as if you are otherwise healthy and crucially, you have no symptoms. So, even if you are diagnosed with ET, it really is, business as usual.
And the ‘chemo’ tablets, Hydroxycarbamide, if you ever need them sometime in the distant future, are pretty innocuous (they are not the heavy hitters we associate with having ‘chemotherapy’). The overwhelming majority of people have absolutely no side effects - except dramatically falling platelet counts. There is no reason that even if you are diagnosed with ET you would need any drug intervention until you reach 65 or your platelet count hits 1500. The important thing is accurate diagnosis and good watchful management.
So, keep working, keep enjoying your family and keep planning for an exciting future. And keep us posted! Happy holidays.
Thank you I have basically diagnosed myself off Google and I have been mentally tortured
Ah. Dr Google. Bad move! Lots of out of date, redundant, scary stuff out there. If you want to look online check out MPN Voice (the lot that moderate this forum). It’s a patient charity set up by the good folks at Guy’s Hospital in London and a world leader in the diagnosis and management of MPNs. So, lots of sensible, reliable information and good advice. But again, remember, you are young, healthy, symptom free and your platelet count is pretty low. And you haven’t yet been diagnosed!
(And no, FYI your hair doesn’t fall out on Hydroxy. Yes, it’s a cyto-reductive drug but in comparatively minute doses. As with any drug there’s a long list of potential side effects. In reality, like taking paracetamol, the overwhelming majority experience no side effects whatsoever.)
Put away the tools of online torture and enjoy the holidays!
Thank you I have been worrying for months waiting to see haematologist am hoping there will be another cause
It’s understandable to be worried, I know I was but the medication for ET usually is low strength “chemo” it not that bad, I’ve been on hydroxycarbamide and Pegasys with almost no symptoms. I wish you well. Raff
Does hair fall out
I didn’t have much hair to start with but definitely no more hair loss since being on both meds.
I was 44 when I was diagnosed with MPN, it was confirmed by a bone marrow biopsy (which I would highly recommend if they suspect you have an MPN). I had no symptoms for about 10 years ( and many people go much longer without any symptoms). We are all a little different, but I only required an aspirin every day.
What is your platelet count
It was about 400-450 when I was diagnosed, its 600+ now, which definately isn't high in the MPN world. This is a great site with a lot of great and knowledgeable people that will be here for you should you need it, but fingers crossed that your blood work and bone marrow biopsy comes back in your favor!
See mine has always fluctuated for last 6 years but my norm is 450 454 I assumed that was normal for me maybe not
The chemo type tablets we have dont make you that sick, all they do is control the platelet factories in your blood... dont be scared, they've made great improvements over the years with meds... I have e.t jak 2 + I've taken the chemo and I'm.now on interferon... it's working very well and I feel ok... only thing is fatigue, most of us suffer with that at some point, you just have to pace yourself.... feel free to message me again...
Thank you
I have been feeling so depressed over this. Dont know how I have managed to convince myself of et
I would be thrilled if my platelettes were as low as yours! LOL! Mine hover in the 8-900's. I am on baby aspirin and was told on a scale of 1-10 regarding cancers, this is like a 1....according to my Heamotologist. Hey, I'll take that. I have also heard, high platelettes don't always mean higher rish of stroke- there's a correlation, but not causation. It depends on your lifestyle, overall health and attitude. I'm working a very stressful job and believe that is why my platelettes are so high. I someday pray I can get them to your level. But yes I understand, I waffle between scared, depressed and just fine. I have slight symptoms of weird vision, however I've always had migraines and vision related issues, so who knows. I will pray that you do not have ET. And if you do, then I pray that soon a cure will be discoveredfor this. Merry Christmas!
Hi I am 31 and was diagnosed in May this year. My platelets are currently at 708 and I've been put on watch and wait and just have to take aspirin. I've been told that chemo won't be an option unless my platelets get to 1500 or more so try not to panic. I know it's very scary and daunting but I honestly haven't noticed much difference since being diagnosed. I've worried and still do sometimes because of the word 'cancer' but it's not as scary as it sounds. It is manageable and not life threatening. We are just the chosen ones
Thank you that's reassuring in my head I worry I will be diagnosed never able to work again or have more kids x
I have a full time job and am continuing with full time hours. I do get tired at times but it's manageable. As for the kids I don't have any but I've been told it shouldn't be an issue in the future
Good to know. Am so worried do you guys think from my story et Is likely
Hi Irishgal12, I can understand how worried you are but none of us on this forum are able to give you a definitive answer to your question, all we can do is try to calm you down with our advice on living with ET. As you can see from the replies you have received, there are many of us living with ET, and other MPNs, who are doing really quite well, still working, able to have children and able to enjoy life, even on medication. I would advise you to read the information on our website mpnvoice.org.uk and write down any questions you have to take with you when you see your haematologist. In the meantime I also think it would help you to speak to your GP about your anxiety about all of this, as he/she will be able to help you to cope with this, as anxiety is not good for anyone.
If you are diagnosed with ET then you can start to move forward and learn more about it and how to cope with it on a daily basis, and continue to live your life.
The words cancer and chemotherapy are extremely scary, but what you need to bear in mind is that MPNs were re-classified as neoplasms in 2008 by the World Health Organization because the word 'neoplasm' new growth, is a term that has been used both for cancers (malignant neoplasms) and non-cancerous tumours (benign neoplasms) and because ET is characterized by uncontrolled cell growth it is called a cancer. Before 2008 MPNs were called disorders, not quite so scary sounding, but still the same disease.
And the chemotherapy medication, mainly Hydroxycarbamide, is a very very mild dose, nothing at all like the doses that people with other cancers, like breast or bowel cancer receive, and again, many people on this forum have been taking these tablets for years and years, including myself, and we are all doing ok, and in fact, feel a lot better for them.
So please, try not to worry too much. Best wishes, Maz
No problem... just as a matter of record my counts where 988 now theyre hovering at 400.... I had an eye bleed, so they saw that my bloods weren't right ,and sent me to heamotology and they got me
back in after bloods showed definite e.t. so don't worry, lots of support on here xxx
It’s easier said than done but try not to stress right now. All of the google searching and lost sleep won’t change to results. I was diagnosed (officially) about 18 months ago. My platelets went from 300k to nearly 1M over 3 years. I have now been on Hydroxyurea for about 9 months.
I stressed, lost sleep, googled, got extra life insurance, updated a will, etc. At 41 years old I thought my time was almost up. Then I decided even if I can’t beat the cancer I could give my body its best chance to feel good. I increased exercise, reduced alcohol drastically, changed to a vegetarian diet, increased sleep, and started on vitamins. Long story but my point is that I feel great. Even with this burden I am in better shape than most of my “healthy” friends.
My advice, take control of what you can control. Feeling better and staying active helps chase away the dark thoughts too. Good luck, you will be ok.
Thank you I thought this was rare disease but looks like a lot of people have it. Just hoping its reactive. Good to know u feel well as that isnt what I imagined
Scared of the Coronavirus
Starting hydroxycarbamide and scared!
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20 Years Old And Scared
