ET

[Mammanan]

Hi just been diagnosed with ET put on hydroxy and aspirin. Feeling a bit emotional the phrase blood cancer is scary can I get advice from anyone about how my life might change please

[Mwalimu]

I think we all know how you feel but many of us find we carry on much as before although fatigue is a problem for most. We soon learn how to work round this and others will give you some ideas on this. Try to get to a forum and meet some people who have the same problem as you - I found that very helpful. Sallie

[Mackydee123]

Hey Mammanan

Hello and welcome! Don’t worry, the diagnosis is the scariest part! Your life won’t change that much at all. I’m ET Jak2+ diagnosed 18 months ago, now on Interferon Pegasys and aspirin. I work 2 jobs and am finishing my law degree! Fatigue management is the biggest challenge. I take high strength Vit B twice a day under my tongue and it helps big time!

There will be days when you just want to stay under the duvet but get a good morning routine in place and just get going. Managing your meds is vital but they will teach you everything you need to do and monitor you well. It’s also very important that you are happy with your consultant and that you are on the same page as far as your treatment is concerned. You’re playing the long game with ET so get involved with the decision making regarding meds etc.

Other than that, accept that you have a rare genetic blood cancer, read lots of info, knowledge is power. MPN Voice website is a vault of essential info and hang out on here for support, chat and friendly familiarity.

Invisible diseases are the worst as most people forget you battle it everyday but tell those closest to you and your boss if you work. My boss is incredibly supportive and allows me time for my apt’s and duvet days if I need them.

And most importantly, be good to yourself. If you need a down day, you take it. Eat your favourite foods or laze about all day or have a home spa treatment, whatever you enjoy, just treat yourself and never feel guilty for taking time out when you need it!

Best wishes and keep us updated!

Kerry

[Aime]

Hi and welcome to this forum. There are loads of lovely people on it who truly understand what you are going through because they’ve been through it themselves. Keep posting about your progress, your worries, etc and you’ll get tonnes of support.

Have a look at the MPN Voice website which is , like this forum, closely monitored to make sure information given is trustworthy and beneficial to all. You will feel like you’re on a roundabout you can’t get off of to begin with because of the tests, diagnosis, the C word but there lots of folks on this forum who have had ET or PV for years and are still alive and kicking. As long as you’re monitored and treated as necessary, I understand we can look forward to a normal lifespan. Someone once told me to compare it to football - cancers like breast and bowel would be at the top of the league but our MPN is near the bottom as it is not aggressive.

Symptoms like fatigue and itching (if you have them are harder to cope with) but keep really well hydrated, eat healthy but have treats and exercise as your body allows. If you’re feeling down, go out for a coffee with a friend or think of something you love - I think about the mischief my grandchildren were up to and that makes me smile and I feel better.

Kindest regards Aime x😺😺

[JackLina in reply to Aime]

You are so uplifting in your comments Aime. I know this wasn't directed at me but it has really helped. I struggling with the fatigue, joint and muscle pain and the itching and it's getting me down at present.

Been off work for 5 weeks now to get used to Pegasys and psyching myself up to returning next Tuesday. I've failed in getting the best routine due to symptoms and side effects, although I am part way there. Big walk first thing after my pint of water and return to more water and healthy eating. I want to get stuck into my yoga again but being too 'intermittent' about it. the bike is there awaiting use and it's a beautiful bike as well. Just need a giant 'kick up the posterior' to get back on it.

Thank you again. I think I may get a move on today as a result. all the best Penelope

[Aime in reply to JackLina]

Hi Penelope, only glad if I can help. I know how frustrating the fatigue and how sore joint pain is, so every sympathy. Don’t be too hard on yourself, you can’t always be on top form. I think exercise is very important but sometimes you do have to give in and obey your body.

Kindest regards Aime xx😺😺

[JackLina in reply to Aime]

Thank you Aime

I don't know why but all the replies I received from two months ago just arrived. so I apologise for not replying to you earlier. Your advice has been acted on and I am coming to terms with allowing myself days when I say no to everything. I don't even feel guilty when I do.

All the best to you. Penelope

[Aime in reply to JackLina]

That's no problem. You take care.xx

[lizk1993]

Hello Mammanan and welcome to this forum. Thought I'd go straight in with an answer to your question. You're not likely to find that your diagnosis will make a great deal of difference to your life, other than you'll be seeing docs a lot more often as you will be monitored fairly closely. I had symptoms long before I was diagnosed and you may well be the same. Please don't be scared - as far as cancers go, this one really is the baby, and as someone else said it's not aggressive. Learn as much as you can from reputable sources. MPN Voice is a great place to start.

Take care

Liz

[WileyFrench]

Hi Mammanan

I was diagnosed with ET a year ago and started hydroxy and clopidogrel (blood thinner) in July this year. I certainly understand how you feel as I was scared and very emotional at first - especially leading up to starting the meds. My brain couldn’t think of anything else from the minute I woke up each day. People on this forum were really supportive and all said that in the beginning it’s just how they felt but that the early anxiety would diminish. And they were right! The meds haven’t affected me at all and as others have said there are loads of people on this forum who’ve lived just fine with ET and the meds for decades. I don’t have fatigue or aches, just some itching. I drink lots (about 2 litres) of water a day, but other than that haven’t changed my life in terms of activity etc. Knowing we have a cancer is hard, no doubt, and I’d like it better if it was still called a “disorder”, but it’s the same disease - and a small fry in terms of all the “C” types. Keep asking questions here, drink water, be kind to yourself and a month from now I’ll bet you’ll feel way less worried and it will all just be part of your life.

Leigh

[Mazcd Partner MPNVoice]

Hi Mammanan, welcome to our forum, as you can see, we do all understand how you are feeling, it is a very scary time when you are first diagnosed. As suggested, have a read of the information on our website mpnvoice.org.uk and look at some of the videos of patients and consutants talking about MPNs, I am sure this will help. The outlook is good for people with MPNs with all the research being done around the world. The word cancer is very scary, MPNs were reclassified in 2008 as neoplasms (new growth) which is a term that has been used both for cancers (malignant neoplasms) and non cancerous tumours (benign neoplasms), and ET is characterized by uncontrolled cell growth. If you would like any of our printed booklets or information about having a buddy please email me at [e-mail]. A buddy is someone who has the same MPN as you and takes the same medication so can give you help and advice, and support, from the perspective of someone who really understands how you are feeling, so if you think you would like to have someone to talk to let me know. Kind regards, Maz

[Superwoman]

Hi mammanan, I presume that means your a mumma and a Nan ? Welcome to the forum, and can I say that is a lovely picture of a very happy face.

I was diagnosed over five years ago with ET JAK2 positive, thought my life was over, I was very distressed at the time, how wrong I was, life for me and many on this wonderful forum thank god I found it, is business as usual, OK I get the occasional day when I am not on par with myself, but do a bit of mindfulness and all is well. I make sure I exercise everyday, love to do walking, swimming, and gardening, eat a good diet which includes plenty of fruit and veg, and most importantly and a must !!! to drink at least 2ltrs of water a day this is to flush any toxins through your body, that’s if you are on any of the chemo drugs, I take Hydroxycarbamide and Aspirin and numerous other tablets, I also enjoy a glass or two of wine when out and about with friends.

I do not let my ET rule my life, I just get on with it, I turned 69 this month and live life to the full, still got a lot of living to do, oh and grandchildren to run after, although they are sometimes a bit to fast for me 😃 but all in all things if anything have improved over these last years as before my diagnoses I had so many health problems nobody could put a finger on why I was always unwell. These days I attend Haematology at my local hospital every four months for my bloods, which I must admit are all on the normal spectrum, and they are really pleased with me.

Finally, if you want to find out more about any MPN please do not do Dr Google, this can be really frightening and sometimes give false information, stick to reliable sources such as MPN Voice and get Maz to send you some booklets on ET.

And last but not least, keep talking to us we are all here for one another even though we are spread out all over the world, even if it is just for a moan or a rant about something, we are a very rare breed of people, but this is the best place to be, so keep talking to us.

Jean x

[Mammanan in reply to Superwoman]

Thank you xxxx

[Elab]

Hi, I was diagnosed with ET beggining of this year.

Found this forum extremely helpful and every time I have a question I writing here. There are so many people here ready to give you advice.

Make sure you are happy with your consultant and ask him / her as many questions as you can.

I also found my hemo nurse extremely helpful and if I have a question I am always calling her.

I also got referred by my GP ( by advice of member here ) to get a second opinion by another hemo . Just want to make sure I am not missing anything etc.

Good luck and remember we are always her to support you and anwpswer any question

Keep in touch

Ela

[Hidden]

Other than what everyone else has said I would suggest taking your Hydroxycarbamide in the evening. When the sun is out cover up, slap on some factor 50 and wear a hat. When flying wear compression socks, keep exercising your legs and get up and walk about and stretch as often as you can, all for DVT reasons.

If you are under 60 get an exemption from prescription charges form signed by your GP/consultant and if you have a critical Illness policy then claim on it.

Gerard

[Ramy22]

It’s scary ..... but you will be fine! Have you looked in the Mpn website? Maz is great (she may have already replied) and you can be put in touch with someone with ET who you can talk with by email or on the phone.

I have had ET for decades and take Hu. There have been scary moments but I have learnt that all is well really!

Mary

[Lemon123]

Hi Mammanan

I was diagnosed with ET Jak2+ in May. The word cancer is a scary word, it took me a while to actually say out loud that I have cancer. Take time to find out about ET, this forum is a great support and mine of information. Fatigue is the main symptom for me at the moment, and mild tingly toes. The diagnosis explained those symtoms and why my immune system is low - I work in school and catch every bug going. Since diagnosis life has carried on as normal, I now just know why I feel tired etc. I've told my employers and close family, and made healthy changes to my diet, and I take gentle exercise each day

As others have said, it's good to get on with life, enjoy things, and just be aware of the ET. I don't think of it much now at all.

I'm 62 and when diagnosed was told, looking back at my medical records, I've probably had ET for 15 years, many here had similar experiences.

I hope life will settle for you too, I've found MPN Voice really helpful and informative.

Best wishes 🌻

[GardenGal3]

My reaction to being diagnosed with ET 6 years ago was, OK, so I have a blood disorder (cancer). As long as I can keep hiking, gardening and playing soccer that's OK. ET is the "best" diagnosis to have and you can live a regular life with it with the medication to keep the platelets down. I have never had fatigue (I now take B12 regularly and some herbs) and I've been on Hydroxy with no ill effects. Just do what you love to do, visit your hematologist for regular blood checks. Hopefully the only real change in your life will be visiting the Doctor more often.

[Janll]

Hello Mammanan and welcome! I was given some advice which I egnored and that was to talk to someone professional. It’s a very heavy burden to try and get your heard around your new diagnosis and still face the same world outside of your head and try and appear like nothing has happened. I still haven’t talked to a professional other than the wise people on here and simular sites. But I did see my GP and started taking a very mild anti-depressant 2 or 3 months ago. Staying positive works wonders. Getting positive is much more difficult. Early days, be kind to yourself. Big hugs, Jan xo

[UKZA]

Hi, I think that I am in the same place as you right now, so relate completely. I was diagnosed two months ago with ET CALR mutation. I have been on 75mg aspirin a day and very reluctant to take the recommended hydroxycarbomide . I decided to wait and see because did not want the side effects of medication, but platelet count is up to 1250 and climbing, so have been convinced to give it a go for a month. So next week is D day! I have been so emotional about this and dread the thought of chemo medication for the rest of my life, I am 49 years. Just reading other peoples stories has given me the strength to cope with my own emotional state and decision making process. Good luck to you😀

[Rastavapa]

Try not to worry to much I have lived with et for twenty years and although I'm now on a trial at guys I have lived pretty much a normal life and worked up until recently, ad long as you be kind to yourself and eat clean etc, on my way to guys as I type this.

Take it easy

[Mardihel]

Hi oh please don't worry, I was also shell shocked when i was told ET, i had no symptons what so ever, was just found from a full blood count. I was put on hydroxy and aspirin, and when i swallowed the first pill, was just waiting to see what happened, seeing the side effects etc, but a o, 6 weeks on platelets gone from 900 to 700, at the hospital in 2 weeks time again, have appt s every 4 weeks apparently. I feel fatigued, but push myself to do things. I play tennis, do Pilates and visit the gym, drink lots of water. What does annoy me is I had a private BUPA medical 14 years ago, and I found the info the other day and my platelet count was 498 back then. Nothing was said to me and it wasn't even mentioned to my GP !!!!! So what would have happened to me if I'd not blood test for something else I don't know. Good luck keep strong.