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ET new

I got diagnosed with ET on Monday....was shocked, sad, depressed, now it's Friday and I'm angry. Channelling this anger into getting tasks done. Signing up here etc.

I would like to learn more about my condition and how to best manage it. I'm 43 with twin boys 5, so I want to manage my condition as best as possible. I understand I now have an increased risk of heart attack and/or stroke so I'd like to look at ways to reduce this risk. I thought I saw somewhere you can get support from a nutritionist?

As ET is classed as a blood cancer, should i register myself as a cancer patient? does this have implications with employers, insurance, air travel etc?

Specifically, I have the following questions:

1. how to best manage the condition

2. is there anyone else with ET I can talk to?

3. Nutritionist. due to the blood clotting risk, i'm at heightened risk of stroke and heart attack. can i see a nutritionist to get my weight down within my bmi and on a healthy diet in line with my condition moving forward.

4. As well as the blow of finding out I have ET i'm in a rut currently. out of work and/or trying to go self employed. One of my new concerns is how potential employers might view my illness. Can I get any counselling in this respect.

5. holidaying overseas and travel insurance. What heightened risk am i looking at from clotting and deep vein thrombosis if i fly? Can i get travel insurance if i go overseas?

6. life insurance. I currently have a policy in place. How is this effected, if at all, by my new condition? Do i need to inform the insurer?

7. registering as having cancer. what are the implications of doing so. will this effect my getting back into work? really need some career focused counselling.

Regards,

21 Replies
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I can address questions 5 6 and 7.

5) Search for travel insurance on this forum, there has been a very recent post on the subject that you should find encouraging.

6) If you have critical illness cover, you should be able to claim. There are plenty of relevant posts on this forum.

7) Assuming you are in the UK this link will help. gov.uk/guidance/national-ca...

Welcome to the club!

Andy

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Thanks Andy. Not a club I ever wanted to join, but thanks for the welcome.

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Hi anewpath, welcome to this forum where lots of people will offer you support. Maz, our editor, will be able to provide with a buddy who has ET.

I totally understand the shock, anger, anxiety , etc which is something we’ve all been through, especially when first diagnosed. If you visit the MPN Voice website, you will find trustworthy information there about ET. Yes like PV and MF it is classed as a cancer but one which is non aggressive and if you are monitored and treated, you can expect a normal lifespan.

As regards life insurance I’m not sure, you would have to check your policy. If you have a Critical illness cover, it is usually payable on this diagnosis. Yes you can go on holiday, providing you check your blood counts are ok and you get advice from your haematologist regarding flight socks, etc. My travel insurance was not severely affected by my initial diagnosis of PV. The MPN Voice website has advice on which insurers give a good deal for mpn sufferers.

Diet - eat healthy, drink plenty of water and try and live a normal life. You will feel like doing that the more knowledge you gather and then you feel you have some control over your illness and not vice versa. Furthermore, there are many people on this forum who have had these conditions for years and are still very much alive and kicking. You will soon get a load of support via replies to your post.

Keep,posting and venting, you will feel better knowing there are others who understand what you are going through and will give up their time to support you.

Kindest regards Aime xx😺😺

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Thanks Aime. Appreciate the reply. I'll be digging out the life insurance policy shortly.

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Anger turns to depression.. then every mood under the sun. My journey began 5 years ago. Now I embark on the other journey taking low dose chemo tablets. At 55 didn't want this and I think we all ask why me. However you will discover a strength that we all have. Try to live as normal as possible. Please be kind to yourself. Ask advice.. and I hope your journey is smooth. I've invested in some hats this week in case I loose my hair from the medication. I've retired .. and just got a campa van. My dream . Now I embark on learning to drive an automatic. . Good luck.

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Don’t be angry it’s not your fault. I feel we all have to find our own strength on our journey. Don’t be sad we all going through this together.

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Hi there. Just about everyone on this Forum will identify with the emotions you are expressing, the anxiety you are experiencing and questions you are asking! The time of diagnosis is an immensely confusing and stress inducing time. And it can feel overwhelming. Rest assured, these are normal responses. And while they very much dominate your every thought right now they will over time become largely background noise. The best place to check for up to date, reliable information is MPN Voice. The answer to many of your questions is right there. The bottom line is if you can secure good, specialist care and have faith in your clinicians then actually, minus a few hiccups, you will just get on with your life. Give it a bit of time, life will become more peaceful. Wishing you all the best.

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Hope this helps , I have had Et for a long time no trouble with Travel insurance but I do now avoid long intercontinental flights .

"I have searched through my old notes on my case which may be of interest .I am now nearly a 74 year old man living in the wilds of Wiltshire and still going strong whilst living with ET.

I started in the rubber industry in 1963 on leaving school and worked for a tyre company in the west of England called Avon, now owned by Cooper tyres of the US. Stayed in the rubber industry another 15 years and then went onto a similar occupation mixing specialist plastics fo another 22 years.

Had some visual disturbance and dizzy spells in late 1985 and had a privately funded medical check including a blood test, which possibly showed some evidence of myloproliferative disease.There was some notes on my blood tests where the technician had written presence of " basofils, myloproliferativre desease ?" On recently checking also spotted PCV was 49 at that time. my GP ay the time did no understand the significance.

It all seemed to get better and was all forgotten about by me and my GP until 1996 (with a new GP) when I was in serious trouble with high blood pressure chest pain and lethargy. Blood test showed a platelet count just over 2 million and a BMB revealed ET. This was controlled with 18 time 500 mg tablets of HU per week and fell to about 330, 000 where it has been for the last 12 years. Recently however it has fallen to 270,000 and hem has reduced HU to 13 per week. PCV has risen to 47 and I am now having a phlebotomy every 6 weeks or so to keep it below 45. Back in 1985 I had two small children and I just got lucky that I did not have any kind of thrombosis. My girls would have suffered without their Dad.?

Generally today I keep well but cannot do an 8-hour workday. Managed to semi retire in 2000 and now fully retired but doing lots of charity work with our entry to Britain in Bloom.I am also now the town crier. However one shock was that when I retired I rang a Swedish friend who i had gone to college who also worked in the the rubber industry and found he had PV. We searched hard but did not find any significant increase incidence of myloprofilerative disease in the Rubber industry. Perhaps most ironic of all two other close college friends have now died of heart failure whilst me and my Swedish colleague keep soldering on. I also enjoy long (8 week trips) to the Continent with my caravan but have to have a phlebotomy as soon as I get back. To be absolutely honest the ET interfers very little in my life , but it does make you get on with things you want do.

all the best hope the spelling is up to the mark.

all the best

Chris Atkins

Brit 74 years old ET diagnosed in 1996 but some evidence of MPD in 1985 9 times 500mg HU per week baby aspirin every day and amlodopine to control the blood pressure."

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I was diagnosed in May 2017 I am 55 year old male. I have a consultant in the Oncology department at the local hospital. If I'm honest, when I have to go there, I feel like a bit of a fraud because in the clinic some of the people there are really ill. I had read up a bit before I met with my consultant to discuss treatment. I started Peg Interferon in Sept 2017 which was my preferred option and so far so good. Your emotions are probably pretty raw but you will calm down over time. You should do a bit of research to understand the disease and different treatments that will help you make an inform choices when you speak with your consultant. I have tried to carry on pretty much as I did before I knew I had the diagnosis. Depending on your blood counts you may not need Peg or HU you might initially be given aspirin. This will be decided by your consultant. Regarding work, I am in employment so I immediately informed my employer because (as I understand it) this is a type of cancer and therefore your employer has responsibilities once they are made aware e.g. let you have time off for hospital visits, cannot discriminate against you because of your condition etc. However I don't believe you have to inform anyone in advance of getting employment - this I am not sure about.

Does anyone out there know the best course of action if going for a new job in respect of informing them or not informing them that you have ET ?

If it was me I would keep it out of the conversation. I can't believe someone with diabetes informs a prospective employer in an interview about their condition.

Your consultant should be able to advise you in matters regarding diet. However as mentioned drink plenty of water, it helps. In all cases with insurance just phone your insurer and have a chat about what's going on. They are the experts and will advise in matters of what is covered, does it need to be recorded etc. As stated if you have critical illness you may be due a claim so definitely check this out as you could be in for a payout. There should be no problems flying although best check with your consultant and there may be extra on the insurance. Once you are over the initial shock, are more informed and have spoken with your consultant things should calm down. Stay positive. Good luck

Jocko

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As you can see from your replies the people on this forum can appreciate what you are feeling, thinking and going through. You will get good information here. Stay away from Google!

Its true, you have joined a club that no one wished to be a member of. I 'joined' almost three yeards ago. Yes it is s... now but it wont always be.

Everyone else has given you plenty of information to digest, so I wont add much other than to say, be patient with your self around all aspects of this (physical, mental etc). It will likely take you many months and longer for all this to sink in and become normal, but it will.

Your journey will be similar to ours but unique to you, so dont assume everything that you hear about others, will definitely be relevant to your situation. Learn, reflect and take on board what works for you. Mostly be patient with yourself.

Best wishes

Pat

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Hello. It’s good that you are taking control of your illness right away. I got diagnosed with ET 11 years ago at age 52. Just make sure you see your hematologist on a regular basis and take your meds as prescribed. As far as travel, I went to Israel last summer. I did have several nosebleeds during the 2 week trip but other than that I was fine. If you already have life insurance, great. You probably will not be able to get any with this diagnosis. I’ve tried several times over the years. Good luck with your journey. We are here for you.

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So many questions, while your anger still rages get as much done as you can as I’m sure you will slow down and accept the situation. It was bad enough for me newly retired so I can only try to understand your emotions.

This site is so supportive.

I’m really glad you’ve got an insurance policy in place because I think you would have serious difficulties getting one now.

I don’t think you are that much higher up the scale for suffering a heart attack or stroke. You will now, be closely monitored in order to prevent one, unlike most of the population.

Getting Travel insurance is a nightmare but is available. It’s just that you answer all the questions then get turned down. So time consuming. I’ve completed many long haul flights since diagnosed with ET.

Depending on your clinic you might get offered various supports. I’ve had counselling, I’m seeing a dietician and getting support from a fatigue clinic. Just having this support bucks me up no end.

I’m extremely lucky.

If you live in the uk maybe you are entitled to financial help. Pips- partner might get Carer’s allowance. Look up on line.

The best piece of advice I read was, if you can afford home help get it. Keep your energy for enjoyable times.

I do hope that this along with advice offered by others will ease your mind.

Good luck

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Dear Anewpath,

I love your name! Wonderful answers from the other above! You should know that there is always support here.

I will address the diet issue. As soon as I had my diagnosis, I ran to my TCM doctor and she sent me to a dietician (also doctor) and she immediately ordered special stools tests in Germany (I live in Austria, when digestion and diet treatments are far from modern). I had, like most people these days, a leaky gut and my micronutrients and vitamins, selenium, iodine, vit D and others were terribly off. I immediately went on the Paleo AutoImmune diet that was tailored to my needs. I also took supplements, my 24 hour bone broth daily, Apple pectin, fish oil, etc. Since I had suffered from a terrible histamine intolerance for 8 years (I now know it started as my ET started-at age 45) I couldn’t handle aspirin. Made my brain numb and my body week. Within 3 weeks, my intolerance was gone and I could take the aspirin. I started losing weight immediately even though I was eating a lot! I’m now down 15 kilos in a year and a half. 4 month after my diagnosis I was feeling better than in the 5 years before that. By blood was doing better too until I started eating a sweet potato every morning and within a week I ate a papaya. Suddenly, my thrombocytes jump by 300,000! Apparently there are foods that increase thrombocytes. #1 Papapya leaves, #2 Papaya, #3 sweet potato! Ouch. After stopping these foods, the thrombocytes went down.

After 8 months on the diet, I went from 6 Anagrelid capsules a day to 3. right now I’m taking four since stressing out my body with a parasite cleanse that another doctor didn’t do properly. All in all, my blood tests (except for the thrombocytes) now look like they did 20 years ago! I have much more energy, don’t get colds anymore, skin and brain has cleared, spleen, lymph nodes and liver are beautiful. I’m much happier and although I have been fighting depression and mood swings all my life, they are gone. Diets have to be tailored to each individual! That is so important. Try to find someone who is a functional doctor, who is up on the latest in biochemistry.

Seeing positive changes in my general health step by step, gave me great courage and hope. I also have done lots and lots of research. I also finished my masters in education Last July at 53! I feel in control of my health and therefore my life and that is really encouraging. I am a much better mom and wife through this illness.

At the time of my diagnosis, I was dealing with terrible problems and stress. My 3rd TIA, light stroke, brought me to the hospital with 823,000 thrombocytes. Within a week, the stress and fear I was under made them jump to 909,000. so it is really important to practice stress management, else it will also do a job on your adrenals. I’m sure we’ve all had the same reaction, lots of emotional ups and downs at first. It is really important to have a doctor you really trust, who listens to you and answers all your questions. I don’t know how it is in the UK, but when you have a cancer diagnosis in Austria, you and your spouse are entitled to ask any question and get a complete answer.

I will pray for your job situation and for you getting good support from family and friends! Always remember to keep breathing! Take it day by day.

Anag

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Hello Anewpath. I was diagnosed with Et jk 2 + last year. Initially I buried my head in the sand I didn't try and. Find out about the condition because quite frankly I was scared of what I might read. My hematologist put me in the direction of this site and eventually I started to read and from what I can gather people have very different experiences with both the condition and the medication to manage it. I'm still scared but I'm still reading and learning about the condition and I've read some really positive posts on here that really helped me keep it together. I'm sorry I can't answer your questions but be reassured that there are lots of people on here who have been living with condition for a long time and can answer them for you.

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I’m new to this site.

I was diagnosed with et jk2 in October 2018.

I had never heard of this chronic disease before the results. I took it well remained positive. My platelets slowly went down. So did the horrible headaches that went with it. I still get them and have migraine treatment too. I’m so happy the headaches have calmed down. My iron has improved. But I still get tired easily may be due to age and this illness. I still bruise a lot when I have my blood test. I’m not glad I’m on chemo Tablets for life. That worries me. As I’ve arthritis and osteoarthritis and this has now got worse. Since the et.

I make allowances for myself rest more and I don’t feel good being older that hard enough with out this invisible illness that is rare as well.

I’m hoping my hair don’t fall out it hasn’t yet. So it’s nice to get in touch with others with this rare illness.

It’s either cancer or not. But regardless Chemo for life is hard to feel great about.

It is a disability but is not classed as one as it should be. Like any other chronic illness it does effect my life.

I’m sure it will get worse in time it has definitely made me lose weight the chemo and illness takes away my appetite so I try to eat a healthy diet. Housework is harder to keep up with. I can’t do my gardens so I’m hoping to soon move to a one level flat.

I live with my disabled daughter so don’t really have an easy life. My other son has small children so I don’t get much help so at time exhaustion gets the best of me.

So no one I know really understand what I have so family no that supportive at all.

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Hi there, and welcome. I remember what it's like at first and can hear how anxious you must feel. I'm 45, diagnosed PV 2015 after a series of TIAs and just short of human combustion high blood pressure. I'm a self employed consultant, and I'm a mum of 2 young children. I was refused critical illness claim because as yet, no real impact on my health to the point where I cant work or that I need to take any more than an afternoon of rest (that may of course change). I get slightly more expensive travel insurance from Staysure, who seem to understand MPNs and it's easy to get blood tests to get reassurance about my blood levels. We'd all love to support you and help you get back to a point where you have confidence in your future (I'm sure you will even if it's different to what it was before). We keep each other positive and know the importance of a positive outlook. My consultant says I'm still more likely to be in a car accident than to fall foul of PV anytime soon. Can I just ask, where in the world are you, and what do you mean by 'registering' as having cancer? Much love from us all.

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Hello Anewpath and welcome to our forum, as you can see, we all understand how you are feeling and I hope that the replies you have had so far have helped you. I would like to add that you are doing the right thing in managing your condition by taking control and finding out about it, read as much as you can on our website, mpnvoice.org.uk, and look at the videos and read the real stories, I am sure this will help you even more.

Q2: yes we have a buddy programme where you can talk to someone who has ET, this is by phone, email or both, having someone who knows how you are feeling does help, if you would like more information please email buddies@mpnvoice.org.uk

Q3: you can ask your GP to refer you to a nutritionist/dietitian

Q4: if you feel you need counselling for any aspect of your diagnosis, it is best to discuss this with your GP, there are also a lot of really goods apps available online which are useful, your GP will be able to advise you on the best ones to use

Q5: as per the replies from the others, there is a list of companies who provide travel and life insurance to people with MPNs mpnvoice.org.uk/documents/t...

Q6: it is advisable to inform your current insurers of your new diagnosis

Q7: I am not sure what you mean about registering as having cancer, can you explain what you mean.

I hope all this has helped you. Best wishes, Maz

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Good to hear from you. I was diagnosed with ET last year, it is quite a shock and takes time to settle. I have been so impressed with the hospital team looking after me. I think you will be fine with a good diet, lots of variety and not too much animal fat. Exercise of any type is good, even if just walking. Have not yet discovered whether holiday insurance is any problem but certainly , with the right medication it seems we can lead a very normal lifestyle.

Please feel welcome to ask any questions . I have a lovely lady who is a buddy to me and we meet every few months. This can be very supportive and mPN will try to put you in contact with someone living near by.

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Hi Anewpath. Welcome to this elite forum, not a club I wanted to be a member of. I was diagnosed with ET and jac2 exactly 2 years ago aged 52, struggled to come to terms with it, and still do to a certain extent. Was a complete shock Get annoyed I can’t do things I use to be able to do. Take Hydroxycarbamide and aspirin, platelets are now under 400 but haematologist won’t reduce my tablets, which annoys me when I see what other people say, hate the thought of taking chemo for the rest of my life, hate having to wear factor 50. Gets me down, as not a day goes by when you don’t think about it but I try and stay healthy, have a very supportive husband, who gives me a shake when I start dwelling on it, and see a psychologist, that works with the hospital, whenever I need to, which helps me to offload. Bought a campervan, something I’ve always wanted and plan trips away. Yet to go down the long haul road yet, something I so want to do but a bit scared. This site has been a godsend to me, and also going to the forums helps as you meet the people too. Ask questions, speak to others and get support if you need it. Take care Jackie x

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Hi there

no doubt you will have many questions and many people to answer them.Company I recommend MIA run by people with chronic conditions for you and I, there quote was 3 times less than any other.

Good luck lav

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I’m 41 with a 9 year old daughter and was diagnosed last year. I went through many of the same concerns and still struggle with things at times. The only thing you can control is your health. I started intermittent fasting, drinking a gallon of water per day, and working out. The disease will progress but your physical conditioning will only help your cardiovascular health and quality of life. Here’s a positive point; your blood work will be tracked regularly now. Many people die suddenly because they don’t get checked. Paying attention to your health might extend your life beyond people without ET. Good luck, you’ll be ok.

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