Hi there. I am 50 years old and was just diagnosed with ET JAK 2 positive. My head is spinning and I’m so scared with this diagnosis. My hematologist is saying the next step is a BMB which really scares me to death. I don’t think I can do it. Is this diagnosis a death sentence? I would love any advice/thoughts anyone with an MPN.❤️
My labs are: Platelets: 479, WBC: 9.5, RBC: 4.24, Hemoglobin: 13.4, Hematocrit: 39
Hi,
This is most certainly NOT a death sentence. I think we have all been through the disbelief, fear and worry following diagnosis, and this will take sometime to get your head around. Please do not google, read the information on the MPN voice page. Keep asking questions and asking advice on this forum.
Karin x
Thank you so much! Since I was just told this week, I am trying to gather as much information as I can on it. I feel like my numbers aren't too high which is why I don’t understand the need for a BMB right now. How long have you had ET and do you have any helpful insight for living with it?
I’ve had for 2 years never told to get a bmb
When I went for another opinion they wanted to do it. I did not and went back to my original dr. The Cleveland Clinic that said do it is known for prescribing test that aren’t necessary. Just a money maker. It is not necessary. Find another dr. By the way I’m doing great. Number down and meds down
I also was in disbelief but I finally realized it was a blessing that it was found before I had a stroke. Good luck
Hi. The purpose of a BMB is to see if you have myelofibrosis, which might need more active treatment than ET. If you can have it done by someone who does a lot of them, then its less likely to be painful. If you are offered Entenox -nitrous oxide- to inhale ( used in UK for childbirth pains) that helps a lot. Full blown knock out general anaethesis has its own risks. I had two, and the second one ( with Entenox) was much more comfortable than the first. I also had an oral sedative before hand.
Do let us know how it goes: there are all sorts if kind abd hekpful people on this site. Glad you found us.
Rachelthepotter
Thank you Rachel for your kind words. I feel as though my numbers aren’t too high which is why I’m not understanding a BMB right away. I would love to hear your ET story, how long you have had it and any advice you may have for living with it.
Hi Smith 124, in the end it turned out that I did actually have myelofibrosis and not ET so I don’t actually have an ET story but rather an MF story. However, as you’ll see, there are lots of people on this site who have had ET for a long time and get on with their lives okay.
As far as information goes, I’ve always found the Mayo Clinic a good place to start . If you want more detailed information about current prognosis and so forth, then nowadays if you google carefully you can find some useful stuff. Just look for citations to peer reviewed journals .
And there are some people on this site who are doing some really helpful things in terms of bringing fresh research to our attention. I sometimes have problems when I’ve been trying to bring that research to the attention of my consultant, but that’s another story.
There seems to be general agreement that there are lots of treatments that might be coming along, so staying fit and healthy with all the usual kind of healthy eating healthy lifestyle advice probably has even more importance for MPN patients. I found it helpful to get a urine colour chart to make sure that I was properly hydrated: you can overdo the drinking water, so the aim should be to keep your urine a nice pale yellow : somewhere between 1 and 3 on a standard urine chart.
All the best
Rachel
Thank you Rachel. This is so very helpful. How are you doing? Are your Drs hopeful to keep it under control? How long did you have ET before MF?
Blessings to you,
Jennifer
Hi Jennifer
I don’t really know how long I had ET for, or even if it was ET originally that became MF- my feeling is that it was steadily progressing MF all along, because by the time of diagnosis the fibrosis was well established. I had been feeling ‘not myself ‘, and increasingly tired for no reason, for at least 3 or 4 years. The haematologist visit was the last specialist my GPs tried. And the haematologist had a look at the series of blood tests, with slowly rising platelets over the years, and asked the right questions and did the right tests.
I was relieved to get a definite diagnosis, because at least I could rebutt the implied - its all in your mind - attitude.
I’m doing OK so far, and the combination of ruxolitinib ( Jakafi) which has a JAK 2 Inhibiting effect plus EPO to prevent the anaemia and the occasional blood transfusion is working quite well. But it isn’t the quality of life I’d expected to enjoy when I retired, ,and I reckon I’m only functioning at about 50% or so. For people with my stage of MF the median life span is about 4.5 years or so after diagnosis. So I should have a few more years - I was diagnosed 2.5 years ago, in Jan 2017. And there are new drugs coming out, and maybe better stem cell transplants on the way.
The vast majority of ET doesn't transform to MF. People with ET have pretty normal life spans.
Having a specialist haem who knows about MPNs and keeps in touch with developments is important, and keeping generally as well as you can helps too.
All the bestv
Rachel
Hi smith124.
Sorry to hear of your ET diagnosis. Without doubt, it can be a scary time. ET is not a death sentence though; there are people on this forum who have had it for many many years. So, I hope that puts your mind at rest.
Stay with this forum, and don’t do too much googling. There is a lot of misinformation out there, which will only heighten any anxieties you have. Take a look on the ‘MPN Voice’ website, you will find professional and accurate information there.
I also have ET (jak2+). I was diagnosed three years ago through a random blood test. I did not have a bmb, but since then, the World Health Organisation (WHO) have included a bmb as a major criteria for a diagnosis of ET. I take aspirin and low dose hydrea. I still work part time, look after my 93 year old Mother, and just get on with my life. I do have occasional fatigue, a bit of tingling, but most of the time I feel a fraud.
Your platelets are just a little over the 450 cut off mark. The rest of your labs look fine. Do you have any symptoms, or was your ET picked up on a random blood test?
Mary
Hi Jennifer.
Your haematologist will determine your ‘risk level’ for possible thrombotic events.
Although I’m otherwise healthy with a low platelet count at diagnosis, I’m considered ‘high risk’ based on age alone, I was 60 at diagnosis. Age (60) automatically puts you in the ‘high risk’ group. My haematologist explained the ‘risks’ as she saw them - but the decision was down to me whether to start treatment with hydrea.
As you are only 50, unless you have troublesome symptoms, or other health related problems, the chances are you will just remain on aspirin.
I feel the same now as I did three years ago. Actually, I probably feel better due to a combination of aspirin and hydrea. Before I was diagnosed with ET I had dizziness and visual auras from time to time. I thoughts this was age related but I don’t get them anymore, so I now know it was the ET.
My advice to you is to educate yourself on ET from reputable sources. MPN Voice and Patient Power are excellent, and stay connected with this forum. As they say, knowledge is power. It’s the ‘not knowing’ that creates uncertainty.
Keep us updated
Mary x
Thank you so much! This is great news. Have you only needed 1 biopsy? Also how much do the platelets fluctuate through the years? Did your Dr only put you on hydrea because of age risk or was it platelet level? Blessings to you!
I’ve never had a bmb. ET was diagnosed with raised platelets (500), and the Jak2 mutation only. As I said before, the WHO criteria for a diagnosis of ET now includes a bmb as a major criteria.
I was started on hydrea due to age only. I only take one tablet daily Monday to Friday and the following week, I only take four tablets. My platelets remain stable around 320/350, they don’t seem to fluctuate.
I think I’m quite lucky.
Hi smith124,
I was diagnosed with ET JAK2 early this May, before my first haematologist appointment I had study about ET online at realisable medical site and I wasn't that nervous after learning about that. Once visited my Haem I was then referred to BMB immediately in the hospital, whole procedure completed within 30 minutes under local anaesthetic and I didn't feel a thing, no pain at all. ET is not a death sentence, most is us can live a normal life, sometime we get more side effects from our medications instead of ET itself providing the platelet counts are not too high, and yours is not really high compare with some patients. With proper care and an experienced haematologist, keep hydrated, eat healthy and being active, we should be fine.
BMB as in bone marrow biopsy? If it is so it's no problem. Just ask for plenty of local painkillers. I have done 10 of these in the past. It's not too bad. You can definitely live a fairly normal life with this condition. I have myelofibrosis. Was diagnosed at 44 and is now 55. Make sure you feel comfortable at your hospital and don't Google too much.
Hi Jennifer. Welcome to the forum, i'm also etjak2 for around 12yrs now. I do take Hydrea and Clopidogrel for the et and a host of other meds for other medical issues not connected to it. I have had 2 strokes, a small one in 2007 just before diagnosis which I thought was a tia but new Haemo confirmed was an actual stroke because of a visible lesion on the brain and also a more significant one in 2015 but let me reassure you this is not the norm. On both occasions my platelets were over the 1000 mark and blood really'sticky', your platelets are not that high. You don't say if you had any symptoms before diagnosis or if it was picked up routinely? Bmb is not as bad as it sounds but very good idea to have it, so Haemo as a bench mark for the future. Atb, tina.🤗
Hi there, I was diagnosed at 50 with ET CALR and felt just like you, my consultant called it Chronic Leukaemia, I only heard the Leukaemia and panicked beyond belief.
I am now almost 63 and have been fine on Anagrelide and Pegasys since diagnosis for the past 13 years. I did not find the BMB too bad but was scared just like you.
My counts at diagnosis were almost 2000 so went straight onto meds. My own experience tells me that it is not a death sentence, It is learning to live with a chronic condition which has some symptoms both from the condition and the medications. There has not been anything that I have not been unable to cope with.
We are all very different and our experiences are very different. People can live with these conditions for many many years.
I hope all goes well for you, your BMB will advise your consultant what is the best course of action for you.
It would be silly to tell you not to worry as like you I did very much so initially, I now just accept it get on with things and am thankful I don’t have anything worse than ET.
Take care and keep us posted.
Lynn x
I was diagnosed about 6 years ago but only had the BMB when my platelets starting to creep up to 1000. Resisted the idea of hydroxycarbomide for a while as dreaded the whole chemo concept but when I eventually had to give in, I felt so much better really quickly and having my platelets under control was a great relief. My haematologist is usually more concerned about my haematocrit than anything else but your figures sound reasonably low. If you are not convinced about the BMB, ask for a second opinion. Mine only threw in the possibility of shouldering myeloma but there is no actual treatment for it, scared the kid out of me and 3 years later my numbers are exactly the same which makes me think that there were always like that. As you speak about your condition you will be surprised by how many people have it or something similar. We think we are rare but I have 3 more people in my circles (not related) with it. All the best
Thank you so much! This is reassuring news to me. Blessings to you!
O my goodness, this is NOT a death sentence and while you should educate yourself on this illness DO NOT believe everything you read or research (remember the source of the information is key!!!) I've had ET (JAK2+) for 19 years, diagnosed at 26. Listen to the experts and not so much to other patients. Remember in this world there are moaners and complainers.
A BMB isn't a wonderful experience but its manageable and provides a huge amount of information about your blood/bone profile. It's baseline data for 20-30 years down the road. Get lots of local and breathe through it, deep breaths. Also, I'm a huge believer in treating myself afterwards!! It's no worse than a nasty trip to the dentist, I think. Good luck and stop fretting, it's not helpful or beneficial 🤗🧡🧡🌻
Thank you so much!! That is so reassuring to me! Since diagnosis, have you not advanced to a next stage? Also how often through the years do they do more biopsies?
Blessings to you!
I still have ET and last year I had my third biopsy to check my progression, as there were a few indications of MF. But, no, I'm still living with ET!!
To answer your BMB question, I had one for diagnosis in 2001, a second in 2014 when I had some issues and a third in 2018 when my blood counts were a little unusual (pancytopaenia = very low white/red and platelet counts). And two out of three weren't bad!! The bad one was because the doc didn't wait long enough for the local to work (she as rushing for clinic) and she was also learning the procedure!!
Good luck!!!
Please don’t be worried as I worried myself senseless regards my BMb . I am 50 yrs old and just had it done and honestly it was fine and didn’t hurt much at all . Don’t google it as all you will see on there is people that have had bad experiences .
Take care Shaun
Hi Smith124,
I am 45 and was diagnosed nearly a year ago with JAK+ ET and I am currently on aspirin only and was never offered a BMB, although I may ask for one at my annual appointment
As Kaggyan said, this is very definitely not a death sentence! I recently discovered that my grandmother had ET and she lived until she was 91!
As you may have discovered ET was classified as a blood disorder until about ten years ago, (when they re-classified it as cancer because of it's myeloproliferative properties) but I think it sounds a lot less scary if you view it as a disorder. ET is considered to have a nearly normal life expectancy in general and I always choose to think that if I am going to have cancer then this isn't a bad one to have. Plus there are really positive research trials going on, Having this defined as a cancer means a lot of funding for research. MPN Investigation & Discovery on facebook has lots on ongoing research.
I wonder whether you could ask to delay the BMB for a while until you feel less overwhelmed? Like a lot of us here those first weeks of diagnosis were really scary and it may be worth delaying the BMB until you feel more okay with everything? You will feel better, I promise, it really is a disease that you can live with.
This site is wonderfully supportive, I can't tell you how much better I felt being able to ask questions from people who were living it! We are all here for you.
Your story means so much to me! I thought this class of cancers was not hereditary? Was your grandmother’s ET as well with high platelets only? Did she not ever have bone marrow scarring? I appreciate you sharing all of this with me. Have you had any advancement in your counts since diagnosed and any more symptoms? I am also trying to figure out where I should go to be treated. My hematologist will treat me but understands if I want a 2nd opinion. He wanted to schedule the biopsy for this week but I do need time to digest this before hearing biopsy results. Do you think this cancer is equal to say receiving a diabetes diagnosis? Or is it definitely way more serious and life threatening/shortening?
Again thank you so much for sharing with me and helping me. Everyone in this forum have touched my heart greatly this weekend when I so needed the support. Blessings to you!!
Hi Smith,
I am glad the information about my grandma has helped, unfortunately I can't add many specifics! She died about fifteen years ago, way before I was diagnosed and as I was living away in London at the time I'm afraid I didn't really hear any details. It is generally considered not to be hereditary but there are odd cases here and there. It clearly can't be the whole story as I have an identical twin sister and she doesn't have ET. My father did try to get hold of her old medical records when I was diagnosed but they seem to have been mislaid so I can't help with level of scarring or treatments at all I'm afraid.
My grandmother suffered with fatigue and breathlessness but otherwise was very sprightly and very much enjoyed life (I too have breathlessness as my main symptom but now I'm on aspirin it is only noticeable if I try to run). The odd thing about this disease is how very variable it is for individuals.
I think that it's great that your haemo is happy for you to have a second opinion, I think it's definitely worth doing just for your own satisfaction if nothing else, I'm sure Maz (the forums lovely administrator) would be happy to give you a list of local MPN specialists if you ask.
My diagnosis was due to long term breathlessness that was unexplained plus numbness in my right foot and a little bit of visual disturbance, For a long time GPs thought I was just a hypochondriac until one doctor noticed I'd had raised platelets since the birth of my eldest son 8 years ago. My symptoms are almost completely relieved by aspirin at present and my platelet count is stable around the late 4oo's . In my case I feel a lot better than I have done for a few years and in fact I was relieved to have a diagnosis.
I think your diabetes analogy is not a bad one. I'm hesitant to label it as less or more severe (although I understand your desire to do so- I felt the need to quantify how terrified I should be early on too) as I don't feel qualified to comment on anyone elses experience other than my own.
From a personal point of view I heard the word cancer and thought I was going to die, or at least be about to experience a stroke. This was my stsate of mind when I found this site. It provided a huge number of people who have been living with an MPN for years and years, some have greater or lesser symptom burdens but almost all of them seem to feel that this is a really manageable disease. Plus even the dreaded google notes that ET doesn't effect life expectancy greatly. this site took the edge off my fear enough to go away and dig deeper on the internet. Although some things seem scary there is a lot of information that is really quite positive. Plus research is heading towards turning gene mutations off, who knows where treatments will be in ten years time?
Oh I also meant to reinforce what others on here have said about progression as I can see you're concerned. I too believe that it is only 10 to 15% of ET which progresses to MF or PV and that is over years as this is generally considered a slow progression disease. Even those who progress can live many years and research is progressing all the time. I love the comments that say you're more likely to die with it than of it as that's something my very cheerful haemo told me!
Hi Smith, and welcome to our wonderful group!
By the time you read this, you will know that this is not a death sentence from the other wonderful friends you’ve already answered you. I
was diagnosed with ET two years ago and had had the illness for 7 years already. At the time my daughter was 13. Scary. I was at 823 and had a tiny stroke which lead to my diagnosis. 479 is low.
At the moment, you sound like me when I was diagnosed. Terrified. Confused. Numb. Fight or flight. It may be, like with me, with all the stress, your thrombos might pop up 100 by next week as they did with me. They go back down when you are settled. Takes 10 days. You must go through the process, deal with the fear, learn, study, ask many many questions, and you will see that day for day, you will be a normal human again leading a normal, but better life.
There is so much we can do for our bodies so that we all live a long life, but we must clean our system, eat really clean foods, exercise, find peace in our lives, remove stress, make sure our bodies are free from toxins and you will probably feel better than ever.
ET is an illness that is chronic and your lifestyle (all the above) will define how the illness will progress. Please do the biopsy to get a clear definition of your condition. I had to take a light seditive beforehand, because I am extremely sensitive and was scared. It went super well. Make sure you feel comfortable with the doctor who’ll be doing it. He talked me through it and I breathed along.
Research, research research. Knowing is empowerment and empowerment kills fear of the unknown. I went through many hemotologists to find the one, who could answer all my questions and was kind and treated me as a worthy patient. It is a person, with whom you should build a good relationship in trust. By the way, If I could choose any cancer to have, I’d always choose this one!!!
I must tell you, it is a journey and I have embraced it and I believe that I was never so deeply appreciative about life as I am now! You will find so many amazing blood-brothers and sisters in this forum, who will support you always!
Let us know how you are doing. We will accompany you through everything. Welcome and keep breathing and looking forward. You’ll be absolutely fine. 🙂
Anag
I cannot thank you enough for your sweet words - thank you fir sharing your story with me. It’s been a brutal weekend - so much sadness. We are scared. My husband is a mess. We don’t know how we are going to tell our kids and family without them freaking out. Our kids are older but still kids - one in high school & one just started college far from home this year. I’m trying to really understand how it progresses. Do you still have ET or is it PV or MF? It sounds like it advances to the next stages as the cancer progresses?
Blessings to you!
I know I’m jumping in on your reply to Anag, and I apologise for that.
I just wanted to say, I urge you at this stage, not to tell your children until both you and your husband fully understand your ET diagnosis. It may cause them unnecessary worry.
I assure you, you won’t always feel the way you do right now.
I completely agree. My daughter was 13 and close to being suicidal. It took me 1.5 hours after the diagnosis, walking around like a wailing ghost in the hospital halls, trying to pull myself together. I came home with a smile on my face. I told her 4 months later, where I knew there is so much I can do and that there’s a long life ahead of me, if I take care of myself.
This illness has never been cured, just dealt with. I’m on a mission to be the first one to get rid of it. There are others like me in this forum. We just might make it before research does! 😁
I have ET the CALR mutation.
I just told my kids I have a blood disorder and I’m on medication and that it’s no big deal. I don’t believe in adding drama to their lives and really you can live with this for years and years and be just fine. I found that going to therapy to learn how to accept this was a huge help.
hi
I also faced this 2 years ago and know exactly how you feel at the moment. it took a bit to adjust and I now realise that I am a very lucky person to have had it picked up in a routine blood test. I would probably have had a stroke etc without getting treatment. I live a normal life with ET Jak2 +. I have just had an ovarian mucosin tumour size 30cm removed and a radical hysterectomy and I am 5 weeks down the line and fine. What it would have been without the haemo treatment I dread to think.
In time and it does take a little time you will hopefully get on with life which should be relatively normal.....yes tiredness can be annoying and I get hot night sweats...…..and be grateful that you have not got anything more life threatening. We only have the present we don't know anything about the future …….anyone ET or not.lets live it.
All the best...……..Planting
Thank you so much for sharing your story with me - I hope you are doing well! Do you still have ET or is it PV or MF? Trying to understand how it advances from stage to stage. Blessings to you!
Hi smith, I was diagnosed ET Jak 2 positive nearly 3 years ago, I’m 54. Had some bone marrow taken out of my hip, uncomfortable but not painful. On aspirin and low dose hydroxy. I like yourself took it really badly on first diagnostic, googled far too much, cried constantly as thought I’d been given a death sentence, took me a long time to accept it and still now I get bad days. But attending forums and finding this site has been a godsend. I found a lot of people don’t really understand that you have anything wrong with you as from the outside you look the same, you don’t lose your hair or weight with the treatment so it’s hard. My platelets were 1500 when first diagnosed but now under 500, I’ve argued with my consultant why am I on hydroxy as sometimes read on here people just take aspirin and of similar age, but he prefers me to continue with just 1 a day, don’t like taking them and sometimes I’ve had to increase to 2 a day. Still get odd tingles which worry me and also get a lot of bone pain which not sure if related. But if you eat healthy, exercise moderately and drink plenty of water I’m sure you’ll be ok. And ask lots of questions too. Take care x
Thank you so much for sharing your story with me - it really helps. Do you have ET PV or MF compared to where you began?
Welcome to the club! If you're JAK2 pos I'd pushback on the BMB. All it will do is c onfirm what you already know. Your bone marrow will show scaring because your jak2 pos. What you will learn is how much scaring you have according to my hemo that doesn't change how they treat you. Treatment is based on how your levels swing.
Your numbers are good today, but as we all learn they can swing wildly. In some cases people go for years on just aspirin. Don't borrow trouble, you'll probably die with it and not from it at a very old age.
How did they find the JAK 2 positive?
Good luck
John
Thank you for your insight! I’m just trying to get my head around that I have an uncurable cancer and how to tell our kids and family. Am I overreacting to this diagnosis? If you don’t mind me asking, are you ET PV or MF and has it advanced from one to the next over time? It sounds like they all cause scarring?
I was diagnosed at age 41 after a routine blood test. I struggled at first seeking several doctors opinions from different areas of the medical field.(Eastern medicine, homeopathic, etc.) My platelets went to 1400 before I decided to go on low dose hydrea. I was heartbroken and scared at the diagnosis at such a young age, but I went on the meds to make sure I stick around for my family!! You’ll get through this, as it’s surely not a death sentence
Hi, Smith124, I was diagnosed with ET Jak2 positive at age 52 in 2008. My platelets were around 600,000. I was also scared about having the bmb, but it wasn’t as bad as I expected. My doctor did it in his office and it was very quick. The good news for you is that there has been a lot of research since then and new treatments are coming out all the time.
I wish you all the best in this next journey.
Thank you! Do you have ET PV or MF? How are you managing it?
So I was diagnosed with ET Jak2 in 2008 and my original hematologist was managing my symptoms for all these years. But my symptoms got worse last year and I could barely function. I became anemic and my platelets were in the 700’s and he couldn’t figure out what to do. So, in September, because of the wonderful people on this site, I got the courage to seek a second opinion, had another bmb, lots more lab work and she said I am in the early stages of MF. So that’s where I am now.
If you are JAK 2 positive but fairly symptom free you can put off the bone marrow. I finally had one after 4 years because i was starting HU and all it did was confirm what they already knew.
Specialists are like scientists who like all the data but as a patient you have choices too.
BTW. Not a death sentence just something to learn to live with... Takes time to come to terms with so go easy on yourself and do what you need to do to get informed and be part of your own care team!
Hugs!
Thank you! Do you have ET PV or MF? Trying to understand what % of ET move on to PV and MF.
I was diagnosed JAK 2 PV 2015. My major issue is plateletes though. I only had one phlebotomy and then on .81 mg asa a day until my platelets gradually rose to 2000 this past summer. Now I'm on 500 mg HU a day with no side effects and my last count was 600. Mainly dizziness and fatigue and memory problems.
I took early retirement and try to exercise my dogs everyday and eat well.
👍
I’ve read that only 10-15% of us progress to MF. I was being treated with hydrea, jakafi, and baby aspirin with various adjustments over the years. My new doctor took me off jakafi and put me on a new drug called Inrebic (Fedratinib) which is specifically for MF patients, about a month ago. If I were you, I wouldn’t worry so much about the future and take one day at a time. As you can see, it’s manageable and there’s a good chance you are not going to progress. Please don’t stress too much over this. I didn’t even tell my kids it was cancer until last year and they are grown. I worked the entire time and lead a full life. Stay positive and your family will be fine.
If its any consolation i lived with a platelet count of 1300 for 10 years. Its now been lowered to 450. Practice a healthy lifestyle and you will give yourself the longest life.
Thank you! Everyone’s responses gives me hope. It’s been a rough weekend so I’m just now responding to everyone. It feels so scary, heavy and uncertain of my life span & quality. Not sure how we are going to tell our kids and family. If you don’t mind me asking, are you still ET or PV or MF? Do you take chemo drug daily for it? Wondering if everyone with Jak2 gets the scarring. Also wondering if someone is ET, what % of ET patients advance to PC or MF?
Blessings to you!
I have ET and take Hydroxyurea and Aspirin. Biggest danger i feel is increased chance of blood clot. That is why a healthy life will help with both longevity and quality. Keep a low cholesterol etc.
I think your life span will be fine but with quality you just have to wait and see. But for certain, the more stress and worry the worse you will be.
Myeloproliferative Neoplasms (Fast Facts) amazon.co.uk/dp/1910797790/...
Hello, I’m Joanne, I was diagnosed with ET CAL-R earlier this year at 42.
I’ve attached a link the a Fast facts book penned by two leading authorities in MPN’s. Someone kindly suggested it to me when I was first diagnosed and when I get a little overwhelmed I find it a good factual way to try and understand and come to terms with my condition. Try not to panic, it really does you no good. Easier said than done I know but your journey will be what it will be and worrying about what *could* happen won’t change it. I have been told and read that the transformation rate is 10 - 15% so it’s certainly not guaranteed that it’ll happen to you.
This book is really easy to read and understand and isn’t clouded by personal experiences. There are plenty of times when I feel very vulnerable because of this disease but in reality as someone else has already said, you are more likely to die with it than from it. Hope this helps. You need to take care of yourself both physically and mentally. I’m sending you a virtual hug 🤗
This is so helpful - thank you so much! Blessings to you.❤️
Hello and welcome to our forum, I can see that the lovely people on this forum have given you lots of very informative replies, and I hope that you are feeling a bit better this week about your diagnosis. We all do understand how you are feeling at the moment and the impact it is having on you and your husband, it is not an easy thing to be told and it does take a while to understand it all, so take your time and as suggested, read as much as you can, I would suggest that you read as much as you can on our website mpnvoice.org.uk mpnvoice.org.uk/ and also look at the videos of patients who are talking about their journey with their MPN mpnvoice.org.uk/about-us/vi... I am sure this will help both of you.
Also, read our booklet about ET mpnvoice.org.uk/documents/t...
It might also help your children to read this booklet when you decide to tell them about your diagnosis.
It is easy for us to say, 'try not to worry' but there are a lot of us around who have been living with our ET for many years, and taking medication, and we are living normal, happy lives, with the odd days here and there where some of the symptoms are worse, like the dizziness, fatigue, bone pain, but you do learn to manage these and find ways of getting through the bad days.
It is ok to feel overwhelmed, we all do now and again, especially if we are having a bad day, but you will be ok, and just remember, we are here to help, advice and support you, and your husband.
I myself have ET, I was diagnosed in 2003 and have been on Hydroxycarbamide for about 12 years now, and I am doing fine, I thought like you when I was diagnosed that my life was going to end, but it didn't, I work full time for MPN Voice and I have a very happy home life with my husband and our little dog, so try not to let this take over your life, take control of your ET, don't let it control you.
Best wishes to you both, Maz
Hi. This is not a death sentence although we all feel anxious on diagnosis. My Platelets were 722 and hematocrit was 54% on diagnosis. I have been on 2 hydroxycarbamide a day and a dispersable aspirin for nearly two years and run a platelet count of 300 to 350 and a hematocrit of 45% and trying to get down to 43%. I am used to the hydroxy now and it is part of my daily routine. I was 49 on diagnosis of the JAK2 positive , similar age to yourself and the prognosis is you live a normal life and the condition is controlled by medication .You are not alone and will get used to it and the support of these forums are a great help
Researching on Google you sends you straight to the cancer pages. It all reads doom and gloom.
Best speaking to people who suffer.
My husband has mf he works full time his medication is working a treat you wouldn't know he had s blood cancer he was diagnosed with PV in 2013 .
You can live a normal life with medication. Stay positive and don't let it take over your life is my advice .
Tracey
Hi there,
I understand how you feel. I was only recently diagnosed myself and will be having a BMB soon. I'm the type of person that when I get diagnosed with something serious like this that I'd rather know the full extent of the situation and then go about trying to 'fix' it. To me, knowledge is power.
I get that you are scared and if you want a second opinion go for it. However, my only 'caution' would be that if you choose not to do a BMB then I would ask the haematologist if that could hinder the treatment if it is MF rather than ET. The symptoms for these conditions are similar and cross over, but the chances of things getting worse could arise if it is MF rather than ET.
Now I'm not trying to be alarmist - that's not what I'm trying to convey. To me I'd rather get a proper diagnosis, and part of that may include a BMB. Depending on which country you are in, the medication you may be prescribed, may have a requirement as part of the prescribing process for the doctor that a BMB is done. Without the BMB no medication could be prescribed. Look I'm not trying to 'force' you to have a BMB but there seems to be more questions than answers at the moment.
If I was facing this situation I would either get a second opinion, then seriously consider getting it done. That way you know what you're in for.
I understand its scary. But it is a manageable condition, just like HIV and Hep C are now. Both of those conditions use to be a death sentence and are now, in effect, they are now chronic conditions which are manageable.
Good luck with everything.
Thank you so much!
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MDS/MPN - JAK 2
ET - JAK 2 negative
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