Is the first time for me posting on here but I read all your post and sometimes re-read. I am an 34 years female, diagnosed with Essential thrombocythemia,, Jack 2 about 2 months ago. I am only taking one aspirin for now, my last blood count was 580 for platelets, increasing. Not had a BMB yet.
I am experiencing a wide range of symptoms.. From dizziness, to bone pain, coming and going the symptoms, sometines i have this slight discomfort under my left ribs and also because i am sdo anxious, i was check for lymph nodes and i feel several of them swollen. Sorry.. But i am to scared. I am a single mother, my daughter is just 2 years old.. And i sm over the rough with my anxieties in this moment. I want to be good for my daughter. All the best for all of you, i know what we are all going trough xx
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Cinemon
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Sorry to hear what your going through. I think the best thing you could do is see your Dr so they can ease your mind. Anxiety and stress can be hard to get away from without definitive answers. Hope things get better.
The symptoms you are experiencing are the same as everyone with an MPN. You will probably be experiencing fatigue, tingling in your feet, joint pain and what we call on here “brain fog”.
You will learn to live with the symptoms. Just listen to your body, rest when you can and, most importantly, ask for help when you need it.
Most importantly, do not Google your condition because most of the information out there is wrong.
If you need help, or have any questions, please just ask the lovely people on this site. They got me through some really rough times.
If you are working, speak to your line manager and explain your illness and how you may need a little support and understanding.
All in all you will live close to a normal life so don’t be scared my lovely. We are all here for you x
I understand perfectly why you are frightened but try not to be. People on this website will tell you that your symptoms are not abnormal and can be controlled with treatment so that you will be well able to care for your daughter.
You say you have a haematologist's appointment. Some of us find our haematologists and GPs do not know a lot about ET so write down the questions you have, for when you see them. (I would hand it to them and, if you have a telephone conversation instead of face to face, email the questions beforehand, Don't forget to mark the email with their name for their attention. ) If you feel you do not get a satisfactory answer, you can always write to this website as I did when first diagnosed 11 years ago. You will always get help here and quickly.
Thank you do much for your reply Sallie. There are really great people on here. I am sorry to hear that you have been diagnosed ET 11 years ago but happy that you are keeping strong! All the best for you xx
Hi Cinemon, your message could have been written by me nearly a year and a half ago. Experienced most of your symptoms and had the same fears. What u are experiencing is normal for ET. Stress is the worst for MPNs ( for anyone really) so try and do something that helps you relax and take all this one day at a time. I know easier said than done. Remember to that people with ET live a normal/ near normal life span if monitored properly. I started my MPN journey by learning as much as I could about MPNs and getting my head round everything including the word Cancer. Then I changed my diet to an anti inflammatory diet with no to limited processed food and started running. I take some supplements too. Try to get your Jak 2 Allelle burden. This will give u a good baseline and will help tell u more about your ET. This place and the people here have been an absolute godsend, full of knowledge and experience and so supportive. B
Welcome to posting on the forum. Glad you reached out.
What you are reporting is quite common with MPNs. It is often the constitutional symptoms that are more bothersome than incidents of thrombosis or hemorrhage. The good news is that many of these symptoms and risks can be effectively managed for a very long time. You are more likely to die with ET than from it. There can be challenges, but they can be dealt with. One starting point is to gain a better understanding of what the JAK2 mutation does and the role that it plays in inflammatory process, At the core, MPNs are inflammatory disorders and managing inflammation is key part of managing the MPN.
More good news - you will have plenty of time to learn all about MPNs and how to manage them. I was diagnosed with ET about 30 years ago, at about your age. It progressed to PV about 8 years ago. I have led a rich life and at 66 continue to do so. There have been some challenges and interesting health-learning opportunities along the way. However, I have raised two kids, have one granddaughter, and continue to live an active rewarding life. Please plan to do the same and enjoy spending time with your grandchildren someday.
Thank you for your reply Hunter! I have seen all your advices given to other people and you are very well informed.I am sorry that you go also trough thid but so pleased to see positive you are! All the best for hou xx
Hi Cinemon. I only want to tell you that you are not alone. I'm 35 years old with ET and jack2. I also have dizziness. Try not to be afraid when I have or I think I have a symptom. But in this forum I have get so much help and calm for my mind and as hunter says '. You are more likely to die with ET than from it'. Listen to you doc and everything is going be fine.
Wise advice from Hunter for you Cinemon. I am in a similar position, diagnosed 28 years ago with ET. I have had a rich life. I have a wonderful family and a grandchild, and had a fantastic career. The worry of our illness gets easier to manage emotionally, but it remains in the background for me. Our feelings and our condition can be managed and overcome. Please don’t despair. Please plan for a long and rewarding life. You will see your baby grow and bloom.
Thank you for your reply! Very kind of you, hopefully i will begin to be more positive. Good to have people like you here on this group xAll the best for you aswell x
Welcome to the group!Just curious, we’re you experiencing ALL of the symptoms you described BEFORE you were aware of your diagnosis?
Sometimes when we discover that we have a new diagnosis the anxiety we feel along with our ever inquiring mind tend to magnify our fear of all those “What ifs”. This can have a very powerful impact on what we are experiencing. I was taught in nursing school, “anxiety breeds anxiety”.
If we can take a step back and recognize that fact alone then sometimes the anxiety lessens. We have all been there. This is a normal reaction.
One way to lessen anxiety is to increase your knowledge about what you are anxious or afraid of. This group is EXCELLENT for that purpose😊. Make a list of all your questions and read the archives here for answers. If you do not see your question, then ask in the forum. Chances are someone can help.
We are here for you and will walk with you on your ET journey. I have had it over 22 years have 3 children and 7 grandchildren. Lots of younger people on here like you with little ones so you got this Cinemon♥️
Thank you for your reply Irish! Well, i have to recognize that i tend to overyhink and maybe associate some symptoms that are nit related.. But i swear, i try to do my best to not do this anymore xAll the best for you x
I am 39years old and I was diagnosed with ET Jak2+ two years ago. I suspect that I had it for much longer because my main symptom before the diagnosis was headaches (similar to migraine). I had those headaches for years and when it started interfering with my job the GP finally decided to run some tests.
My platelets range between 625-780 and I am only on Aspirin. Since starting the Aspirin the headaches have all but gone.
I was extremely anxious after the diagnosis and couldn't understand my symptoms. I have a stressful job and I am often sleep deprived. It took me months to finally make sense of my 'symptoms' (aches, palpitations, breathing difficulties, dizziness, 'brain fog' and a lot of procrastination) . With time I realised it was actually pure anxiety, stress, fatigue and my asthma playing up.
I am 'normal' and fully functional when I have a good night sleep (unfortunately it doesn't happen very often ), when I exercise or have an easier week.
I still have 'symptoms' every now and again but it is only when I 'remember' that I have ET, so clearly they are anxiety-related.
It was a slow journey to get here but I guess we all go through this after being diagnosed. I am sure things will get better for you too! All the best.
I think your post really may be meant for Cinemon. She had posted about her anxiety being hard to control due to just newly being diagnosed. She created the post: “ Worried about my symptoms”.
I hope you are better able to get sleep now. I found meditation and yoga helped my sleep and if I am too “wired” I listen to audiobooks.
We are all on this journey together…it is nice to know there is this group’s support keeping us company😊♥️
Hi IrishHiker, you are right, I am sorry. See, that is me trying to multitask here: sorting out work-related emails and replying to ET-related posts 😉 Clearly I have some 'brain fog' now 😂 Thank you for advice, I do yoga sometimes, it does help!
No worries and pleased to meet you! It happens frequently on these types of forums because folks get lost in the multiple threads/replies. I have done the same thing. I just wanted your message to be received by your intended😊
Hi it is so hard when first diagnosed and you are single with a child too. You will get through it. I see you have an appointment with consultant next month. Are you in the Uk.? Do you have family close by?Start making a list of all your questions. My guess is you will be started in meds and no need for a BMB. Contact Maz on MPN voice.org. Uk. She can give you a buddy. The site is definitely worth a visit
Just remember when you see side affects of meds. It’s only usually mild in in most cases. You might find if you go on meds you will be tonnes better.
Thank you for your reply! I am based in Manchester, i don't have my family close to me but they are supporting me a lot, from distance. I have few friends that i can rely on but still this anxiety is playing with me all the time. All the best for you xx
It did with me for years especially when my platelets went up. Manchester has some specialist MPN consultants. Ask Maz for a list and request one of those. Good luck.
Welcome to the forum which ,like me, I am sure you will find most helpful and everyone is so friendly it is easy to compare symptoms and reassuring to find we’re all together with similar aches, pains fears and hopes. I’m sure the messages on here will help to allay your fears hopefully. I was diagnosed 3 years ago with ET JAK2 + but am at the other end of the age scale .Best wishes Fran xx
Thank you for your reply Azaelea! I was reading some of your post and I was saying to myself.. Oh, i got the same symptoms. Sorry to hear tgat you are going trough this aswell but happy to know that you are managing your symptoms xx
Hi Cinemon ~ beginning this journey is frightening in numerous ways, so it is good that you found this safe spot to land. I find the archives especially informative. Unfortunately, anxiety seems to drive many of our symptoms. A GI doc recently told me I HAVE to de-stress ~ great in theory and very difficult to realize. Wishing you the very best!
I’m sorry to hear you are going through such a rough time, especially with a small child to care for. My platelets were about the same as yours when I first got diagnosed with ET jak 2 in 2008. I also experienced many of same symptoms. My main concern for you is the pain on your left side. Has the doctor checked your spleen? Also, as other people have said, perhaps you should seek out a MPN specialist. A BMB would give you a more complete picture of your condition and you may need other medications.
Please let us know how things progress. I’m so glad you reached out to this group. It has helped me so much on my MPN journey.
Thank you for your reply, really appreciate ! I know what you mean with the spleem. I had an ultrasound few months ago and showed no spleen enlargement. I went for the same reason, discomfort under left ribs and also right ribs sometimes. Now for example I'm fine, no discomfort. All the best for you xx
Hi Cinemon, the dreaded stress and anxiety, a great combination to produce more inflammation. My sister has giant cell arteritis which came on suddenly and is a disorder associated with inflammation and apparently it is closely linked to MPN. I developed ET about 18 months ago, no symptoms just a routine health check that identified the high platelet count. My sister and I are both in our sixties and we both have a anxious/nervous disposition as did our mum. I have always been very fit, exercised and had an outdoor life. On diagnosis I felt ill and stressed about the toxic medication I was given. Suddenly I felt 'different' to everyone else, I had cancer, life was not the same anymore. The truth of the matter is once I accepted what I had I was then able to get on with life in the great outdoors. I have just returned from a week in the Yorkshire dales cycling up some of the great iconic climbs, did a number of hefty hill walks, returned home and got straight back to the gym, aquafit, pilates and riding a few horses. I am the same person as I was before and all of my aches and pains and brain fog I had long before ET and before you say 'well maybe you had ET earlier than you think' many of my friends of a similar age are all complaining of the same thing and presumably they do not have ET. I still have the odd day when I think I could be dying but once I wheel my bike out of the garage and set off on the country lanes all the stress and anxiety leaves me. Exercise is great for stress so if the have the time please try and do as much as you can (difficult with a child of course). Good luck and keep fit.
Hi Cinemon, so sorry to hear of your ET diagnosis at such a young age. You’re roughly the same age as my daughter.
It’s understandable that you’re feeling anxious right now; also being a single Mum and living away from family can’t be easy. I hope you at least have the support of good friends.
You’ve had some excellent response, and some have recommended that you see an MPN Specialist, I would agree. I note you live in Manchester. There is an MPN Specialist at the Christie Hospital, Professor Tim Somervaille. Just knowing your under the care of an expert will help alleviate your anxiety too.
Stay away from Dr Google, this will only fuel any anxiety. This is a great group with some real knowledgeable members, there will always be someone here to support you. Xx
Thank you for your reply and also for the suggestion! Hopefully i will manage to keep my anxiety under control better. In this moment i am still looking for answer.All the best for you xx
Cinnamon, good morning from Seattle. I've been diagnosed with E.T. for nearly three years. I think my high anxious time came more recently with some increased symptoms. I got support by contacting my primary physician who referred me to a cancer support doctor. These doctors support the rest of our body and what it is going through i.e. fatigue, anxiety etc. in order for you to be in the best physical and emotional health possible as you manage the E.T. If there are no docs like this then you might ask your doctor first for a referral to a therapist who could assist in helping you manage the anxiety. There are many suggestions such as yoga, mindfulness meditation, deep breathing exercises etc. but sometimes you also need a person to guide you to these resources. And perhaps a friend willing to care for your little one while you attend a class. Good luck to you. I'll be breathing with you.
Thank you for your advice and also for the reply! I can't believe how many people are leaving with this condition, wich to be honest i have never heard of until the moment i had my second blood tests results with my platelets increased.. And i started my own research. All the best for you and keep strong xx
If it makes you feel any better i was about your age when first diagnosed and went so about 10 year just on Aspirin and platelet count of 1300. Your current platelet count is my normal count on Hydroxy. But everyone is different.
Wow what a wealth of help and information you have received on here. It is truly amazing all these wonderful people ready and willing to help and reassure. I have only been on here two or three weeks and have learnt more on here and from the MPN.org site than anywhere else. I too have many of the same symptoms and had BMB earlier this year which showed up JAK2 also. I have just started my treatment on Friday after eventually seeing the Haematology Specialist Nurse at the hospital and getting Hydroxycarbomide. It is all indeed a bit overwhelming when you get the diagnosis and the sympoms are persistent and unpleasant, however when you read the posts here from eg Emerald A, Hunter, Irish Hiker etc, they are so reassuring and much of their advice has certainly helped me through my first couple of weeks. Take heart from your professional team and from all those posting support here, you will I am sure benefit and feel reassured by that support. In June I suffered a really awful bout of anxiety and there is absolutely no doubt it exacerbated my symptoms, so now I am also trying to heed all the advice given here and not get too stressed and anxious.
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