Hello all, I am new here. I am 25, got diagnosed with ET with JAK2 mutation positive. The funny part is I am doctor myself, just got my general physician degree after 6 years of hard work. Now it is 3 more years to complete the specialty of my choice, then I will be a specialist doctor. So, being from this field I handled the diagnosis pretty well, didn’t panic at all. But it would be a lie to say that I am not worried at all. Theoretically I might know a lot about the disease, but in reality, like every kind of cancer, the experiences vary with each individual. Currently, I am on hydroxyurea. I would really love to know about your experience and how you are coping. Your response will really help me. It is tough for me because I am only 25, I have my whole life in front of me and it is scary to even think that I might get leukaemia one day. There is so much i want to do....
25 with ET: Hello all, I am new here. I am 25, got... - MPN Voice
25 with ET
Can imagine it was a shock at your age . Are your platelets very high . ?
I only found out as mine were steadily rising over several years . Not really many symptoms . Slightly purple fingers and a couple of toes .
I’m just taking aspirin and being monitored .
So different for everyone .
This site is a great support
Have you had Vit D tested and ferritin etc ?
What stress coping things do you do ? Really necessary for all of us , but especially in high stress jobs like yours
X
Hello, thank you so much for your reply. I am assuming that I have had this disease since I was 21-22. Because I got my Hemoglobin levels checked Once at the age of 21-22, because I was having fatigue and headaches (and I assumed it to be anemia-that’s the first and the commonest cause that comes to mind, right?) then the Hb came out to be 18.5. Too high for a female, even for a male. The physician that I saw at that time, just brushed it off as nothing serious. Then now, at 25, I went to one of my own seniors (haematologist) and told him about all of my symptoms- EXCRUCIATING MIGRAINES with VISUAL DISTURBANCES and NAUSEA, SEVERE PAIN IN MY LEGS -FROM KNEES TO THE FOOT, knee and ankle pains, fatigue, tiredness.
He got my blood count done and as usual, the platelets were very high. We got a bone marrow biopsy done, the results showed that the platelets are huge in size as well. Also, Jak2 mutation is present. So he put on hudroxyurea, I have noticed that my migraines have increased with this drug. But i am hoping that this will subside once few months on this drug pass by.
Yes, My vit D is always on the lower side.
I have been a sportsperson all my life, in school as well as college. And I do weightlifting. I love it.
Having such a healthy lifestyle, where I literally workout every single day, eat healthy etc, I don’t know what could be the cause of this. But then, we can never know, it can happen to just anybody, but i pray it doesn’t. 😁
Hello and welcome to the forum.
Firstly, congratulations on your well earned degree. Maybe you should choose haematology as your speciality. There are a couple of GPs that I’m aware of on the forum.
Sorry to hear of your ET diagnosis at such a young age. It can’t be easy despite your stoicism.
I was diagnosed with ET Jak2+ at age 60, which automatically put me in the ‘high risk’ group, even though I have no comorbities. I am on aspirin and a low dose of hydrea 4x500mg weekly. It suits me very well and my platelets are stable for the last four years, long may it continue. I can’t help but wonder why though you’re on hydrea at the age of 25?
I do hope you have been made aware of MPN Voice.org.uk. It’s a professional and reliables source of information for MPN patients and or their carers.
Mary
Hello, thank you so much for your reply.
Thank you for letting me know about this website, I will surely check it out today.
Even I don’t know why I am on hydrea at this age. 😅 I asked this to my doctor and he said that this is the best course of action in my case, and we are getting blood work up done every 3 months to monitor the progress.
thank you for the specialty recommendation, I must say that this has been going on in my mind since a long time. I wanted to be an oncologist ever since I was a kid, but never had any idea about the branch, but now i am sure that it has to haematology.
Currently, I am on a very low dose, 500 mg a day.
No aspirin because I have had bleeding episodes- bleeding gums and prolonged episodes of menstruation. Actually, this is how I got my diagnosis, I kept bleeding for almost 12-13 days and that is when i freaked out and got everything checked and then came this ET bomb.
I would definitely ask for a referral to an MPN Specialist. This would be in your best interest, especially as you are so young.
If your platelets were very high your dr may have put you on hydrea short term to get the numbers down quickly. Another reason is you appear to be quite symptomatic. Hopefully, you will then be offered a more suitable drug for your age, such as Pegasys.
Hello, I think you are right. I should definitely see an MPN specialist. Because my current oncologist just gave this statement “you have to take this drug (hydroxyurea) for your whole life and it is nothing major, relax”. I was absolutely shocked at what he was saying. I was even more shocked that he knew I am a doctor myself and still he was so nonchalant in his explanations, then what must be his attitude with other patients who are not doctors and put their trust in him.
Anyway, I am going to ask for a referral. Thank you so so much ❤️
I wasn't much older than you when I got my diagnosis and I am 48 now. I am low dose aspirin and asked to be moved to Guys hospital a few years ago as my local hospital kept giving me conflicting information depending on the consultant I saw. As you are a medical person I would do your homework on the meds and risks and also ask for a treatment plan to be in your patient file.
I have resisted meds for some time now and there is lots of research on vitamin D, CoQ10 etc that may be effective
Hi Doc , did you read what the famous Dr Talpaz wrote last year about ET and interferon ?
Moshe Talpaz, MD: I studied it in 1998; it was a long time ago. A patient who I started with essential thrombocythemia but JAK2 positivity. I started to treat her in the late 1980s. And she developed a complete molecular response after 25 years. She is in remission now, after 30 years on therapy. She still gets it on and off.
onclive.com/peer-exchange/m...
Hello, thank you for your reply and for the reading recommendation. I am surely going to check it out today. 😁😁
I also read something similar in a yesterday's new article. If you read it all, there's a point that says "after 12 years on Pegasus, the Cancer should been eredicated". I couldn't figure out if this trial was sponsored ,but i think it wasn't at least of Pegasus manufacturers.
Welcome to MPN voice. I really understand where you are coming from. I'm sorry that you got this diagnosis. Stick around this place because you will not be alone. There is lots of support, information and advice from the good people here. A good diet, exercise and limit stress in your life will help. As for the things you want to do you will still get to do them! x
Hey, thank you so much for your reply. ❤️
You are absolutely right, I posted my question wondering wether I would get a reply or not. But the amount of encouragement and support that I have received is so motivating and uplifting.
Good to see your posts. I am a retired G P and at 56 two years ago was diagnosed with Jak neg cal r positive E T. I am pretty stable on hydroxyurea and responded pretty quickly though platelets do fluctuate. I empathise completely with your situation and was particularly interested in the reaction of your doctors. I feel like you perhaps that as a doctor we may be paradoxically at some disadvantage as it's assumed that we " know all about our condition " and therefore will worry less as we are used to dealing with illness and uncertainty . Yes perhaps but as a DOCTOR not as a PATIENT... I had barely heard of E T and M P N s before diagnosed. We may well know more about what to look up and review and what to discard but apart from that we should be treated like anyone else. The forums have been very enlightening and I enjoy them. Ironically I was never that keen on patient support groups but I have changed my tune now as this has been very useful. So that's some advice for you. I am sure you will have a fabulous career. and by the way the E T didn't cause me to retire I had anyway look forward to hearing about your " journey " ( though I hate that fashionable expression "😪😜Derek
Hi
Firstly well done for your achievements. You must stay positive and believe in medical technology . You are very young and you have a bright future. I believe we are very individual how these diseases affect us . I have ET and Parkinson’s disease , I try to remain happy and optimistic . I think why give myself mental torture , after all my physical body is going through enough ! Stay strong
Very best wishes.
Kiki64
Hello, thank you for your reply.
Kudos to your attitude towards life and thank you for Sharing your valuable wisdom. I am trying to do the things that i love, like going to the gym, working out etc. and i think you are absolutely right, our own thoughts torture us more than the actual problem. Why do that? 😁
Thank you 😁
Welcome to our amazing group
The only thing l would add is the importance of mental well being especially against anxiety and stress I see a psychotherapist which helps me. But others use different techniques such as self help mindfulness etc
I try not to worry about things that may never happen all the worse case scenarios. Worry and panic can be life destroying. I try instead to focus on positives about myself and my situation. I keep healthy sports diet etc. All the good experiences,knowledge, long fulfilled lives of our forum members also greatly helps
Good luck on your journey!
Hi DoctorWithET, congratulations on the degree. I find this forum a positive with coping with the idea of having ET Jak2 +. I was diagnosed end of last year aged 42. It helped a lot reading the posts and realising that life can carry on.
Hello, thank you for your reply.
Thank you.❤️ Yes, this forum definitely radiates positivity. I am already feeling motivated and feeling like I am not alone. How are you? Hope you are keeping well.
Hi DoctorWithET, I’ve sent you a pm.
Greetings from Fleetwood England.
You ate not alone on this journey.
Having the right information for your condition enables you to make informed choices.
Perhaps your team can point you on the direction of research trials.
As you will be aware there are a few long haul survivors on here.
At least you are being monitored.
My migraines have now resolved after my course of treatment of hydro two per day.
Remain stable after 4years.
Keep strong.
Best wishes.
Hello, glad to know that your migraines have resolved. I hope you stay healthy like this. 😁
I am just waiting on them to disappear.
Hi. Sorry to hear of the DX, it can be a shock. I’m by no means an expert but am ET Jak2+ (DX at age 43 2 years ago) and given the choice of meds I am a little surprised you decided on Hydroxy. I have an active lifestyle, lots of time outside doing sports, etc so was advised that due to my age and lifestyle that Interferon was worth trying first. I have had great results with it and bloods back in low-normal range. Side effects of fluey symptoms were dealt with by paracetamol for a few weeks then subsided.
Like others have said give MPN Voice look, done great advice and experiences on there.
Best wishes. Cath.
Hello, thank you so much for sharing your journey. I am definitely going to ask my doctor about my options with interferon. ❤️
Hi
It sounds like you are definitely in the right job to cope with this anyway and congratulations on your degree. I still imagine this was quite a shock. I don't know about you but I always thought something medical was not right when I was younger and before diagnosis. I was diagnosed at 22 years old and now 41 so completely understand what you are going through. I had migraines since I was 16 years old and only when I had a nose bleed that wouldn't stop and had to be admitted to A and E I had my first blood test and my platelets were over 1000. I was also put on hydroxurea to start with and once my platelets started to reduce so did my migraines. I still felt tired and run down at times but overall a lot better. After about 7-8 years of treatment I started to get really bad indigestion and panic attacks so was taken off the hydroxurea and put onto interferon and then pegulated interferon and this is much more preferable at people in the younger age bracket - I found that my symptoms went away and you do feel a bit like you have flu for the a couple of weeks but then the side effects overall were a lot better. I could also have children on this treatment and now have a 7 year old boy and 4 year old girl. I felt this was a miracle as at the time of diagnosis I was told I wouldn't be able to have children so it shows how much can change with treatment and management of our conditions and a couple of clinical trials in relation to other treatments at the moment. I am having a great life and I do a lot of exercise, work 4 days a week and run around after my kids a lot but from time to time I need to slow down a bit and rest and relax a bit more as this condition does have peaks and troughs, I am currently dealing with pre menopause symptoms and I do think have ET effects that slightly - happy to answer any questions you may have or chat in general.
Take care
Becky
Hello, hope you are keeping well. Thank you so much for such a detailed sharing of your journey, it has definitely given me great insights.
As for interferon, I am definitely taking this advice and going to discuss this with the doctor.
And yes, the thing that you said about having migraines since you were 16...I can totally remember having migraines all throughout my high school years and not having a clue about the cause. I am hoping that my migraines will also go away once the platelets reduce.
I hope you stay safe and healthy ❤️
Wow welcome and wow again. Only 25! Another wow, why the medication? Are your platelets very high?
It would be interesting to know how you found out about your illness. Some of us know really quickly. I couldn’t understand why I felt drained. After querying my platelets being over 500 and being dismissed over it I put it down to anaemia and bought myself a tonic.(something until I retired I always battled).
Eventually it was picked up during a trip to a and e for something else it was queried by the consultant.
As for how I feel, it’s taken me years to cope with it. We are all individuals and the symptoms are wide and unique. For me the fatigue has got worse as time progresses. This is partially due to the increased medication as my platelets and anaemia rise.
This last 18 months I’ve stabilised. Yippee!
You have worked really hard to get where you are now.
Go for your dream job just remember that somewhere along the line your lifestyle might change.
The best bit of advise I read was if you can afford home help get it. This will allow you to do things you enjoy.
FIND TIME TO DO THE THINGS YOU WANT TO DO.
You will hopefully have a good salary and quite rightly so . This will give you freedom to in the future reduce your working week as some people do struggle with a full week of work. Others notice nothing . ( I’m retired and still have sofa days).
Good luck.
Sending you hugs
Hello, thank you so much for the reply and for the motivating words. ❤️
I am so glad to hear that you have stabilised and are doing better now. I pray that you stay healthy and happy.
My diagnosis was a coincident. I still remember being in first year of med school (years ago), during lab we had to prick ourselves (finger) and take out a drop of blood to do blood test (haemoglobin levels etc- this is done for learning purpose, every student uses their own drop of blood to learn the test procedure). So, My Hb turned out to be 18.5 ish. I was confused and as a confused student brushed it off as some error in my testing. But then next year, I started experiencing fatigue and my migraines increased in frequency and intensity both. So, I went to fhe doctor and got my blood test done, that GP didn’t pay much attention to the high platelet count and dismissed it. Again, being only in 2nd year of med school, you see all these doctors with awestruck eyes, because they have achieved what you want to achieve. So with that, I assumed him to be the best judge and ignored it. Then now, my period came and i have an otherwise very regular menstrual cycle, this time the bleeding continued for almost 13-15 days and I also started experiencing gum bleeds. The inly different thing this time around was that after all these years I was a doctor too, and I decided to see one of my own seniors (a haematologist) who got my blood tests and Bone marrow biopsy done. It turned out to be ET, honestly, at that time I was just relieved that it isnt MF, because it is more aggressive type of MPN. But then, once the initial news settles and realisation hits, I was literally in tears because since childhood I had wanted to be an oncologist, as this field is close to my heart because my grandpa died of cancer and I could never even see him (he passed before I was born). So i just felt connected to oncology. And all these years, studying to be an oncologist, I myself got diagnosed with cancer, so it was a bit ironic. But then, I can take it in my stride and use it to be more resourceful and helpful to my patients. ❤️
Currently, just preparing for my specialty training exams and stuff. Hoping to get in my specialty of choice.
As far as ET is concerned, I have been reading the very helpful replies of everyone here and have decided to talk to my doctor about interferon.
Yes do get a specialist MPN. Heamo. You may want to specialise I this field now.
Are you in the Uk. Maz from MPN VOICE. org .uk Is very informative. I don’t understand your high haemoglobin. Usually ET ‘S have low.
Also my limited knowledge tells me because you are young and female hydroxi isn’t for you.
We need you xxxxx
Hello. I am not a doctor with ET but my doctors say that I know so much that I am almost one.. I have been diangnosed with ET because of a Massive longembolism. Three weeks IC. I also have colitis ulcerosa. Not a very good combination those two.
When you say it could become Leucaemya. Five to ten patiënts. I always.tell myself that it isn't me. And in case it is my physician told me he has lots of medicine tot help. Stay positive. Grt
Hello, thank you for the kind words. Yes, absolutely, we have to stay positive and focus in the brighter side ❤️ Hope you are keeping well.
The same for you
Hey Doc,
Have you thought about Peg Interferon instead of HU ?. I've been taking it for 3 years and it's been really good.
All the best
Jocko
Hello, after reading your advice and similar others on this forum, I have decided to seriously talk to my doctor about interferon.
Glad to hear that you are good, wish that you stay happy and healthy. ❤️😁
Hello,
I was diagnosed in my early thirties and believe I had ET long before. Platelets were around 800, was put on Hydroxy and aspirin straight away and this kept my levels between 400-600 for years. The side effects I had were mouth ulcers, fatigue, nausea, I didn’t have these constantly, they were every so often but I managed them. Around 3 years ago I asked if I could come off the Hydroxy as my platelets were under control and my consultant agreed. I have now been on no medication since. My platelets range from 1200-1400. I’ve been advised to go back on medication if the reach 1500 or if I get side effects from the illness. This may be something you could mention if you don’t get on with the medication. Good luck and well done on your achievements. x
Hello, thank you so much for replying.
Glad to hear that you are doing well without the medications, I pray that i stays this way❤️
After reading so many similar advices on this forum, I am going to talk to my doctor about detailed treatment options other than hydroxyurea
Good morning to you. I am sorry to hear you have had a diagnosis so young.
Lovely to find a health colleague!
I am a health visitor, much older than you. Diagnosed aged 60 and now 62 yr old.
I am also ET but a mpl mutation.
Also on Hydroxyurea. I remember that feeling when the condition was explained to me. The doctor asked if I wanted to raise any questions and I couldn't think of anything at the time . Came home a bit shell shocked and gradually have been reading about the problem. This forum is brilliant, lots of support. I do feel very well looked after by my team. They take great care and I am always able to phone in if any worries.
I am glad to say no side effects so far, next check in August with a lactase test for checking any organ responses /damage.
With exercise, good diet and a healthy life style, it seems we can live along with ET .
Please do keep in touch. so delighted you have got through medical training, a huge effort. One of my son's has just qualified as a doctor, so a subject dear to my heart.
Wishing you very well.
Hello, thank you for your reply.
And wow, I am so happy that you are doing well and taking such good care of yourself. Congratulations on your son’s degree, wow, that’s great.
I will definitely keep in touch. ❤️
Thank you for your kind wishes.
Really hope you keep well and feel very supported by your team.
This is a great way to find others with similar conditions, and check out new treatments.
Covid allowing, we also have opportunity to attend brilliant forums and find out about research.
hello and welcome to our forum. It is a shock when you are first diagnosed and does take a while to come to terms with it, but we all understand how you are feeling so you are in the right place for help and support. As already suggested, have a look at our website, mpnvoice.org.uk, it has lots of very useful information. Congratulations on your degree, well done. Best wishes, Maz
Hello, thank you so much ❤️
The website is really very helpful too. This forum is for sure the right place, it has only been a day since I joined and I already feel so supported. ☺️
Hi. My daughter was diagnosed 3 years ago at 18 with ET Jak 2. She was just about to go to America on a sports scholarship and was told by the haematologist to go on hydroxy and that as this would make her very susceptible to the sun and skin cancer she wouldn’t be able to take the scholarship which was in a southern state. I looked up the drug and saw it was not recommended for young people as it can lead to cancer on long term use and has a limited time for benefits. In other words over 60s is fine but at 19 it’s benefits will not last for a lifespan and it’s negatives are quite frightening if you are told you will need to take it for many decades. I also contacted a dr friend overseas who told me my daughter was low risk having not smoked, no strokes, very fit etc despite her platelets being over 1,000. Luckily I was put in contact with a specialist MPN haematologist who immediately confirmed my dr friend’s opinion. My daughter takes aspirin alternate days but she comes off it to prevent as you have experienced particularly heavy periods. Her platelets remain around the 1,000 mark but are often much higher. It is important to have an individual base line to be a guide in this matter. Three years later there have been hiccups and worrying times due to the disease’s multitude of symptoms but she is about to start her third year in the US, training six days a week in the pool and gym and running up to 8k. She gained a bronze in her Conference championships this year and beat her PB for the first time since she was sixteen. Sorry for the length but it is so rare to hear from anyone my daughter’s age and it is a very different situation when diagnosed so young. With such a small cohort it is difficult to find comfort in being able to know how this cancer plays out over a lifetime when diagnosed so young. I sometimes think it would be a good idea to have a group for those diagnosed at a young age as they are coming from a very different place than those at the more normal first diagnosis age range. Finally my advice is to see a specialist MPN haematologist to oversee your condition and whatever else you do - don’t give up your sport!
Hi there. Just pick up on your comments about Hydroxy and cancer.
While it is true that taking Hydroxy can make you more susceptible to sun damage and skin cancers I don’t believe there is evidence that it can lead to an increased risk of cancer (AML etc) long term.
Certainly the advice use to be (a decade ago or more) that this may be the case. But it emerged that that any potential increased risk was down to the combination of drugs prescribed over the course of the disease. And those combinations are no longer prescribed. Best wishes.
Hello there,
First of all, congratulations on all these wonderful achievements by your daughter, she is surely a rockstar.
And you don’t have to apologise for the length of the message, it is my privilege to be surrounded by people who care enough to share their personal experiences, which are way too valuable.
And you are right about hydroxyurea, thank you for the advice, I am definitely going to talk to my doctor about alternative treatment options. It seems way too risky to take hudroxyurea right now.
I hope your daughter stays fit and healthy, and keeps surprising you with many more wonderful achievements ❤️
Thank you and good luck with your ET journey. Hopefully there will be a cure or better drugs within the next decade. If you enter the haematological field you might even be involved!
Hi there.
First, congratulations on your medical studies.
You’ve received lots of good advice! I simply wanted to re-emphasise the importance of seeing an MPN specialist. You’re young, you’re ambitious, you have your life ahead of you with all of life’s milestones to come. It’s critical you are under the care of someone who is at the cutting edge of MPN care.
I too, find it odd that you are on Hydroxy. It’s no longer really the drug of choice for young patients. And on the basis you are otherwise fit and healthy (and assuming your platelets are not not north of 1500) drug intervention is unusual.
Also, you mentioned heavy menstrual bleeding. Again, there are standard drug treatments that may alleviate that. But it also means you may have to temporarily stop and / or generally reduce your aspirin intake. Less can be more.
Finally, as Maz says, check out MPNVoice. There are plans to develop the charity’s work / focus on young people and MPNs. You’ll see from reading the posts on this Forum that an increasing number of MPNers in their twenties and thirties (and some teens) are coming forward. And clearly you are at a very different life stage with different challenges to the traditional older MPN patient. Having said that, there are lots of common bonds and valuable experiences! Wishing you all the best.
Hello, thank you for taking out your time to respond. You are absolutely right, I need to discuss with my doctor about options other than hudroxy. MPN voice is a very informative and great website.
Thank you so much, I hope you are keeping well ❤️
Congrats on your qualifications. You have received lots of good advice here, but I just wanted to add that if you were my daughter (my daughter is 39yrs), I'd also be suggesting you try Pegasys rather than HU. It is becoming first preference especially for young patients. So sounds like you need an MPN specialist such as those at Guy's. All the best. (I have PV JAK2+ on Pegasys).
Hello, thank you for giving me such an honest advice. ❤️ It really means a lot. And yes, you are right, I am going to discuss this with my doctor.
Welcome. There’s lots of support in this group. I heard Pegasus was good for young people. Maybe worth looking into ❤️
Hi
As you have seen, you have found a great place for support. I was diagnosed with ET about 10 years ago, and was on aspirin until about 3 months ago. A BMB revised my diagnosis to Pre-MF and I started Pegasys about 2 months ago. Based on what I read about the alternative treatment options, and also what my consultant said, Pegasys is a really good choice for younger patients. From my experience, my platelet level has reduced and is now in normal range. There is also a next generation pegylated interferon therapy which is likely to be approved in the next few years which has an improved side effect profile.
I agree with the other posts - I wold recommend that find a specialist in MPNs to treat you. It really does make a huge difference.
Take care
Katy
Hello, thank you for your response.
I hope you are staying safe and healthy. ❤️
So sorry to hear about your revised diagnosis, but glad that your platelets are getting normal.
Yes, I agree with all the advice, I need to discuss my treatment options properly and also see an MPN specialist
My 21-yr old daughter was diagnosed with ET JAK2+ in Jan 2020. Aspirin therapy only. She sees her hematologist every 3 months; platelets around 650-750ish. Dr recommended she stay on her vegan diet but also go gluten free. She has been vegan 3 years but the gluten free part was to help with her migraines and it has very much helped as she hasn't had any since going (mostly) gluten free. She is working towards a Ph.D., gets exercise, drinks organic green tea, turmeric milk, pomegranate juice, takes vitamin D, a multi vitamin and manages stress. I would like to see a group specifically for young people with MPN's. Since not as common, would love to see it include UK & US.
Hello, thank you for your response and congratulations on your daughter’s hard work ❤️ I hope she is fine and stays healthy.
Migraines are a real issue for me too, initially i thought that I am having these bad migraines maybe because of my stressful routine of studying and hospital shifts, but later when I got diagnosed with ET, I realised it is because of that.
But we will get through this. Your daughter is strong and she will achieve all her dreams. ❤️
Greetings from Norfolk UK, doctor with et. I sincerely hope you decide to specialise in MPNs we need more doctors who fully understand these conditions. Best wishes, Carol with PV Jak2 +
Hello, thank you for your response. I hope you are keeping well. And yes, that is what I am planning to specialise in 😁
Hi & a big welcome to the group.
I’m heading for 2 years since my diagnosis.
I’m 52 and currently inject Interferon. Hopefully you’ll be ok on your current medication but Interferon (where available) is also another option.
Migraines & tinnitus are my 2 main issues but in the overall scheme of things those symptoms I do find manageable. Also, like most others , tiredness is sometimes a difficult issue.
On the whole though, and as you know, as long as we’re treated it is something we can lead a relatively normal life alongside it.
I’ve found that my team at Guys are really good at looking after me but the people here on this forum have been priceless as it is truly amazing to just be able to share our stories and experiences where others don’t understand.
Cheers & good luck
Mark
Hello, thank you for your response. So happy to hear that you are fit and fine, and hope you stay healthy.
Migraines are truly a very bad issue right now, but i hope it will get better.
You are absolutely right about the people here. Been only a day since I joined and all this support is amazing❤️❤️
Howdy!! I’m 77 and was diagnosed same thing last February after 3 years of platelets slowly going up. On 500 mg hydrea every other day since cointvwent down after been on it every day for only two weeks. Plus aspirin every day but that’s normal as I Have always had migraines so it’s difficult to say if they’ve been worse but they’ve been a little different. Hard to explain how. But fatigue is horrible. Always been very active. Good days are wonderful when they happen. Dr can’t seem to find a readable reason for the fatigue. Guessing it’s just part of the problem. Learning to pace myself. Hydrea does make me nauseous tho. A day or two a week so it’s flat ginger ale and crackers for the day and lots of reading! But regardless, it could be so much worse! I’m grateful for what it is.
Yes you are only 25. And that’s great as you do have the rest of your life and who knows what strides will come around. And having it can make you sooooo much better as a doctor as you can fully understand what people go thru and accept their symptoms as being real! And it is NOT in our heads or just depression.
Keep us all up to date. Always appreciate others.
Hello, thank you for your reply. The knowledge that you just shared is very valuable.
I suffer with migraines too, since as long as I can remember.
Yes, you are right, I have always wanted to be an oncologist since I was a kid, because my grandpa passed away from cancer and I couldn’t ever meet him, he left us even before I was born.
So i always felt a special pull towards this branch of medicine. But wasn’t sure about the types of cancers I would be specifically specialising in, the way God showed me my intended branch is quite funny (by giving me the disease, haha!!) but i am sure this is only going to make me connect better with my patients.
Hello, and welcome to this forum. As you can see, there is a lot of great information on here. I was diagnosed with ET jak 2 positive in 2008, at age 52. I went to the doctor also because I was having really bad headaches and he put me on hydrea and my headache did go away. I understand your concerns, of course. But there are people on this who have led long, productive lives for many years. There has been so much more research over the years, which you will benefit from.
I wish you all the best. You will get so much support here so keep us informed of your progress.
Hello, thank you so much for your response and for the kind and positive and uplifting words.
I sincerely hope that you are healthy and stay happy. ❤️
I am also expecting my headache to go away after some time on therapy. Will definitely stay connected with all the wonderful people here
Hello and welcome! I just turned 37 this past week, and was diagnosed with ET last year after having high platelets for a while. My platelets are currently just over 1 million and I'm on Aspirin only until they hit closer to 1.5 million. It's a total shock to be diagnosed so young, as this is more common in people over 60, but I've learned to calm down some since my diagnosis. I have 3 kids and was terrified of it progressing to MF. I've calmed down some about that possibility, but it still creeps back in sometimes. I'm seeing a hemotologist, but not an MPN expert, and most people will tell you an MPN expert is the way to go! this is a rare cancer and you really want the best possible treatment, especially at a young age. I am in the process of scheduling with an Atlanta MPN expert (I'm in america obviously), and am really excited about it. I'm hoping I can be seen with him before I have to start meds b/c my hemo mention hyrea but from what i've read Interferon is better for younger patients b/c we are obviously going to be using the meds longer than someone in their 60s would. I just want to see what an expert thinks is best. I know this is livable, not curable, but manageable and i want to make sure I'm doing everything I can to stay healthy and alive for as long as i can 
Anyway, sorry that's so long, but welcome to the group!
Heyy, thank you for the detailed response, really gives a lot of helpful insight 😁
I am so glad that you have been doing so well, and also going to see a specialist. It is going to be great.
After all the advice here, I am also thinking of seeing a specialist.
I will keep you posted😁
Do tell us how your meeting with the specialist goes and what valuable info you learn ❤️
Hi. You should definitely check PEGylated interferon as alternative treatment to the drug you're taking now. It's not chemo and it has a potential to slow down the disease progression. Hydroxyurea is not the best choice for younger patients.
Hi, I am 53 years old was diagnosed with ET at 27 and started on hydroxurea and aspirin. My platelets were 1500. I then moved to the US where the haematologist there said I was young and healthy and only needed aspirin which was fine. I saw a specialist called Dr Tefferi at Georgetown who was very knowledgeable about my blood disorder which it was then known as and I had 2 healthy children who are now 18 & 15. I had my umbilical blood stored in the US in case I need it in the future and had stem cells stored early on in England when I was first diagnosed. I am now back in the UK and due to being older I was advised to take more medication and decided on Anagrelide with Aspirin. I have been healthy throughout. I love to ski and play tennis and try to keep active. Early on, after my diagnosis I was pretty anxious but as time has gone on I feel happier with the situation and finding MPN Voice by accident as no-one told me about it (4 years ago) has been absolutely fantastic. Good luck with everything. Lisa
Welcome to the forum. We are glad to have you here, though wish you did not need to be. I was diagnosed with ET over 30 years ago (in my early 30s) with ET. It progressed to PV about 7 years ago. I am still alive and kicking at age 65. I have had a good life, a rich 40+ year career as a mental health professional, a wonderful family - including two kids and a grandchild, and much more. I also have Neurofibromatosis Type 1. The combination of two kinase-based disorders is a unique learning opportunity. They do have impact on each other. The two conditions have posed a few newer unique learning opportunities in the last couple of years. But life goes on and we each can find ways to thrive despite the challenges.
Regarding your concerns about hydroxyurea, they are well founded. It is clear from your list of symptoms that intervention is warranted, but at your age HU does not seem like the best choice. HU is teratogenic, carcinogenic, mutagenic and possibly leukemogenic. "Hydroxyurea is a highly toxic medication with a low therapeutic index." - (quote found in many literature sources- see reference below) I am sorry to hear your hematologist was so cavalier about the HU. Your concerns absolutely are appropriate and there really are better choices. PEGylated Interferon and Ruxolitinib both would seem preferable and both have evidence to support superior performance in terms of MPN symptoms beyond reducing hematapoiesis. While some people tolerate HU with few issues, not everyone can. Here are a couple of useful resources to review.
drugs.com/monograph/hydroxy...
packageinserts.bms.com/pi/p...
It is very important for you to consult with a MPN Specialist. Not all hematologists have the KSAs to optimally treat MPNs. Many docs only see a handful of these rare disorders in their entire career. Sadly, some docs just rely on older protocols for the treatment of ET and are not up-to-date on what the state-of-the-art in MPN treatment is. Here is a list of MPN-expert docs (where I found the MPN specialist I see) mpnforum.com/list-hem./ . Please do find someone near you to at least occasionally consult with. There is an even smaller number of docs with expertise in the early emergency of MPNs. The one doc I am aware of is Dr. Smith-Resar at Johns Hopkins Hospital. There are a handful of others. hopkinsmedicine.org/profile...
NOTE: I am followed at the MPN Clinic at Johns Hopkins. I am also seen at the NF Clinic there. The care at JH is outstanding.
The first MPN Specialist I saw was Dr. Jerry Spivak. He is one of the leading experts in MPNs. Here is his presentation on MPNs. It is worth watching.
youtube.com/watch?v=hbVr9u3...
Regarding the issues with hemorrhaging, this does occur for some of us. I am also off the aspirin due to excessive bleeding/bruising. I am hoping you already had a von Willebrand Panel done, including PTT/aPTT - INR. Do be aware that the more current research shows that Acquired von WIllebrand Disease can occur at platelet levels as low as 800K and is more common than previously thought. The diagnostic protocol for Acq.v.WBD is not the same as for the congenital form as it can present differently.
Your hx of high HGB is a concern. You did not cite elevated HCT or any other indicators of erythrocytosis. I am thinking you already know that there is actually a continuum of MPNs between ET and PV. They are not always distinct disorders. If you happen to know your JAK2 Mutant Allele Burden, that may also be a part of the profile to factor in.
I wish you success on your MPN journey. You are in a unique position as you also start your own career in medicine. I hope you do become not only an oncologist, but an expert in MPNs as well. We need doctors who develop this expertise. You would bring to the work an intimate understanding of life with a MPN that few physicians could match. Perhaps we will see you name on the list of MPN Expert Docs someday.
Hi, sorry to hear of your diagnosis. For my part I was diagnosed 6 years ago Jak2/ET and put on aspirin at first with hydrea 4 per week. I found that I was literally "falling" to the floor with no apparent warnings which was quite concerning. Haematologist took me off aspirin and now on Clopydogerel. Now my hydrea intake is 3 daily so 21 per week but bloods seem to be behaving themselves. I can truly say that I have no symptoms with this dosage and lead a very normal life and seem to have much more energy than many my age - now 69 - so I should take heart and I do hope you are as lucky as I am with the way I am able to still live life as normal!
Jenny
Hello, and welcome to the forum - it really is a great place to get support and information. My daughter is also a young doctor (hopefully 2 years from getting her anesthetics consultancy), and I am also ET JAK2 positive (although at the opposite end of the age scale) so I understand what you are going through.
Reading through the posts I can see that you have already received some excellent advice, but I would just like to add a couple of thoughts to the list:
1. ET is a very rare disease and very few doctors (even hematologists) are fully familiar with it so I would strongly advise asking for referral to an MPN specialist. Fortunately we have some of the worlds most eminent MPN experts in this country but the NHS system tends not to guide you towards them unless you push.
2. No one understands what you are going through better than you do, so become your own expert. The medical profession tends to be led by data (test results etc), which is fine but that tends to miss the quality of life issues that affect all of us in different ways. For example, research has shown that fatigue is a significant issue for MPN patients, but it is rarely considered during consultation with non-specialists.
3. Although MPNs are classified as cancers now, they are chronic and not life threatening. Most sufferers experience a normal lifespan and develop coping strategies that enable them to enjoy life to the full.
Post-diagnosis can be a scary time, but keep positive and if you need help just ask - there is always someone here who has experienced something similar and can offer advice
John
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