recent diagnosis of EY

[TB66]

i was diagnosed at the end of May with ET had been feeling under the weather for a long while… i put this down to looking after my terminally ill husband, who had lung cancer… He very sadly passed as way two weeks after my ET diagnosis.. As you can imagine I m a little overwhelmed with everything at the moment and really don’t know how to process the ET .. I have had some great support from family but also some remarks like … it’s not really blood cancer and it doesn’t affect your health or life ? I’m due to start the chemo tablets in September .. I’m feeling very confused as to how i should be feeling.. any advice would be greatly appreciated

[Hatchie]

Hi I'm sorry for your loss. I imagine dealing with a MPN diagnosis and the loss of your husband was extremely difficult.

I was diagnosed with ET at the age of 33. I was told it wouldn't impact my life expectancy and had minor symptoms that could be managed. It was never called cancer and I was told there was a 3% chance it could transform into cancer.

I didn't question it and life was generally good apart from some migraines.

I assume the chemo tablets you are starting are hydrea? Did they also discuss pegylated interferon?

This forum is a great source of information. I also recommend reading some academic literature to learn more about the disease. Find a good specialist and work together to manage your ET symptoms.

Maintain a healthy lifestyle and don't let the C word impact your thoughts or life.

[TB66 in reply to Hatchie]

Thank you for the kind reply

[Exeter21 in reply to Hatchie]

Hatchie so sorry you got diagnosis at traumatic time. However it means you have chance to get great treatment. Do not just accept Hydroxy . Hydrea, which is what NHS seem to do with no suggestion of any other treatments. Read our page it saved me as I was very ill on Hydroxy & by reading I found there were alternatives. I asked to change to Peg Interferon. It was a life changer for me. Please ask to see an MPN if you get nowhere with options of treatment. I had to contact another hospital MPN for advice & it has been amazing. You will be fine once you have correct drug . Regards Julia .

[TB66 in reply to Exeter21]

Thank you so much for the reply and I’m glad you are doing well now .. Will look into everything I can find online

[hunter5582]

Sorry to hear about the loss of your husband. It is normal to feel overwhelmed during such a difficult time. More so to find out that you have a cancer at the same time. It is good that you have support from family but perhaps there is some education needed as well.

ET is a form of blood cancer. It is a chronic cancer rather than an acute form. Many of us look at it as cancer with a little "c" rather than cancer with a big "C". Properly managed, most people with ET can expect to live a normal lifespan. The key is "properly managed". Having said that, ET can present with significant symptoms and issues, including thrombosis, hemorrhage, stroke, embolisms, erythromelalgia, paresthesia, insomnia, migraines, pruritis and more. The most common constitutional symptom is fatigue. The key to understanding this is that the deregulation of the JAK-STAT pathway that causes the overproduction of platelets does more than that. It also causes the overproduction of inflammatory cytokines. This causes many of the symptoms we experience with MPNs.

Finding appropriate treatment is critical for managing ET or any other MPN. There are two first-line treatment recommendations for ET, hydroxyurea (chemotherapy) and Pegasys (immune modulating therapy). We each respond differently to these medications, which work in different ways. Each medication has its own list of benefits and potential side effects. Each person must carefully evaluate each of the options to make an informed choice.

I was diagnosed with ET over 30 years ago. It progressed to PV about 11 years ago. I have been living a good life and continue to do so at age 69. There have been issues to manage, both MPN and non-MPN related, but these issue have been successfully managed. I responded much better to the interferons (Pegasys/Besremi) than I did to hydroxyurea. Pegasys was more effective and much easier for me to tolerate than hydroxyurea. Note that my response does not predict yours.

The most important thing at this point is to consult with a MPN Specialist. MPNs are rare disorders and most doctors, including hematologists, have little experience with them. It is worth doing whatever is necessary to consult with a MPN expert provider. Here is a list. mpnforum.com/tsr-the-list/

Wish9ng you peace and grace as you move forward.

[TB66 in reply to hunter5582]

Thank you do much for your reply, it is very helpful.. I’m going to ring my nurse specialist on Monday to go through bits and pieces.. Again thank you

[hunter5582 in reply to TB66]

You are most welcome. You may find these two documents to be helpful.

How I Treat ET. by Dr Claire Harrison mpnjournal.org/how-i-treat-...

NCCN Guidelines for Patients MPNs nccn.org/patients/guideline...

[TB66 in reply to hunter5582]

Thanks again I will have a read. And it’s nice to know there are such thoughtful people out there.

[Mishie14]

thinking of you and hoping you find some relief. My ET diagnosis was 2+ years ago. It was overwhelming to me, not having health issues for 70 years and then ET. I had high platelets but otherwise no ET symptoms. Got BMB and more blood tests plus a genetic assessment that all confirmed ET with JAK2+. I should have pushed back for time to explore my new world but didn’t. Also should have reached out to MPN specialist first but didn’t know about MPN. Hematology started hydroxyurea chemo pills that ruined my quality of life. Switched to anagrelide pills which was less intrusive for a while. As dose increased my Quality of life deteriorated again. Treatment was worse than the disorder. Been on peginterferon weekly injections slow and low path for a year+ which is working and with nominal side effects. Suggestions are get time with an MPN specialist, explore the treatment options and make conscious decision about which drug and possibly supplements are best for you, don’t ever be shy about speaking up, and accept it’s OK to change your treatment plan. Your welfare is most important. Best of luck to you.

[TB66 in reply to Mishie14]

Thank you for the reply i have found everyone on MPN most helpful.. and will talk to my nurse specialist on Monday

[Frances1903]

Thank you for your post,and so sorry to hear of your loss and then a diagnosis. Bless you such a hard time. Glad to say ET is a condition that can be managed very well.If you follow your treatment plan and look after yourself we can life normal life's and love to a good age!I was diagnosed 6 years ago and take daily chemo.Please feel welcome to message.Take much care.

[TB66 in reply to Frances1903]

Thank you for your reply it has been a great source of inspiration reading all of these messages

[Amethist]

My deepest condolences for losing your husband to cancer. Truly horrible, compounded by your own diagnosis.

It’s great you have found this forum and I hope it will answer some questions.

You will see there is a wide variety of options, from doing nothing to following every treatment offered.

I err on the doing almost nothing following an ET diagnosis 8 yrs ago, but from earlier blood tests probably had it starting 15 yrs before that.

My advice is take your time. Don’t feel pressured into anything. If your not sure, seek a second opinion preferably from an MPN specialist .

Ask lots of questions on here as there is a lot of experience, from different countries, different treatments and different perspectives.

Finally, if your Dr hasn’t already done it, I would highly recommend that you get all your vitamin levels checked ( vitD,folate,B12,iron, thyroid panel ) it is possible that some of your symptoms maybe due to deficiencies, which can be rectified easily.

Hope you find answers to all your questions here and some support on your health journey.

Best wishes x

[TB66 in reply to Amethist]

Thank you so much

[Strumin210]

First I want to say how deeply sorry I am to hear your husband passed away and my thoughts and prayers are for you to be comforted in this time. As to those who say this stuff is not cancer or it does not effect your life should walk a week or so in our shoes . Maybe if they experienced some of the fatigue or constant headaches ( ocular migraine) then they would change what they say. I would personally say research this to those who think that way then comment on how I'm supposed to feel. Peace and blessings from LA, LOWER ALABAMA.

[TB66 in reply to Strumin210]

Bless you and thank you

[RoundTheWorld]

Welcome TB66. So sorry for your loss and that you are going through such a tough time.

I’ve found how to react difficult at times too - it’s a confusing diagnosis as risks are serious but with good management patients can have a good and lengthy life. It can be disorienting (sometimes lonely) to experience v. different reactions from others.

For me this forum and time have helped restore a sense of balance. My local haematologist is practical and takes questions seriously but it helped me to have a one off appointment with an MPN specialist so I could get a long list of questions answered in one go and build a fuller picture.

If you haven’t already, perhaps point some of those making less helpful comments to the description of ET on the MPN Voice website? It can help to see a reputable website explain it in plain terms explaining why it’s manageable but also serious (and so of course unsettling until the longer term plan is clear). Do ask here if you have questions - with patients all around the world someone usually answers quickly - it all helps get up to speed. Warm wishes.

[TB66 in reply to RoundTheWorld]

Thank you for your advice I’ll certainly look into it

[FCancer123]

Take it one day at a time. When a day is too long take it one hour, one minute, or even one second at a time. Know that it's ok to start taking care of yourself and to just take moments to pause when you need to. People have literally said to me...well you don't look sick. And some days I'm blessed enough to not feel sick. But some days I'm exhausted (most days)🙃, some days my legs really hurt, I lose my train of thought a lot. My advice to you for the two cents it's worth is that if you've been looking after your husband for a while and got this dx close to losing him I can imagine that you are overall devastated and feeling like your foundation is quicksand and your world been completely rocked. That's how I felt at first. After the shock I've eased in to a pov that I'm actually very blessed. How many people find out they have cancer and are not terminal. I even feel guilty sometimes when I'm at the cancer center for my appointments cause I'm looking around at the other patients and wondering their potential outcomes. Anyway...I also discovered that I've been alive but not really living. So I'm gonna start trying to rediscover what I like to do and consider it an adventure. After starting HU im feeling somewhat better but the fatigue is still a struggle. I have more good days than bad days now. On days im feeling well i wake up and think ok...todays a good day. I can do this day...Best of luck and sending love. We can do this!

[TB66 in reply to FCancer123]

Thank you so much for a very positive reply , has made me feel a little more confident going forward.. ansi. Thank you

[FCancer123 in reply to TB66]

Absolutely! And you can message me anytime!

[MaggieSylvie]

Hi, I have MDS and thrombocytosis. My only advice would be to feel what you feel; rest when you feel you need to rest and don't listen to people who are dismissing your illness. It may not affect your life, but it has already affected your life and no-one knows how you feel or what you are capable or not capable of doing. You must have a lot to do following losing your husband, so I would just concentrate on that and take care of yourself. You don't know (and neither do I) how you will feel after the chemo.

I have never found out how I should be feeling. I just keep doing the blood tests every few months and seeing them rise a couple of points and the platelets staying down at a level that makes me think they've made a mistake. Meanwhile, we have to live, to clean, to do the shopping, to take care of ourselves and others. That's enough for anyone without worrying about how they should be feeling. Just feel what you feel and take care of yourself.😊

[TB66 in reply to MaggieSylvie]

Bless you and thank you for your support and reply

[Grateful333]

I'm very sorry for your loss. I was diagnosed in 2018, and I went for a very long time on aspirin alone. I had the bone marrow test and I have the CALR mutation. My experience has been very little to none of the symptoms that some have described above, so please know that you might not experience what some people are describing. If you haven't had the bone marrow test I would recommend it because sometimes there can be an underlying cause of high platelets and if they haven't explored that then you really need to find out if something else is causing it.

I have not been to a specialist because of the my location and my insurance coverage. I'm not aware of a specialist in my state, I probably will go to see one if I can get some sort of health coverage that will allow for partial payment of services out of state.

[TB66 in reply to Grateful333]

Thank you for your reply and I’m grateful for your advice

[Luvlyhubby]

So sad to hear about the horrendous time you're having. Not sure if this helps, but my 74yr old husband was diagnosed with PV & Jak2 Sept 2023 after blood test (done yearly after heart attack @ 50- no op req,on meds) showed high haemoglobin. I didn't want to know, but after his PV diagnosis, it was a case of being prepared so asked his Haematologist doctor if it was cancer & she said no,asked how she knew & she said it was due to his blood readings. She did however tell him it does come under the blood cancer umbrella, and told us what it MAY lead to. He's been on Hydroxycarbamide since (dosage changed a few times,once due to bruising) now on 500mg pday, & honestly, since the day he was diagnosed & put on Hydroxyurea he's been absolutely fine,lots of energy (as he's always had) sleeps/eat well, but always keep my fingers crossed 🤞. I DO worry,I know it does me no good, because it doesn't matter how healthy you are, no-one knows what tomorrow brings. Really hope that your life goes in a happier direction & that you have a Haematologist you can talk to.

[TB66 in reply to Luvlyhubby]

Thank you for the reply and the sound advice I’m going to speak to my specialist nurse on Monday for some more clarity. Again thank you

[Fairydust1111]

hi there, my partner died of lung cancer in 2022 and I was diagnosed with ET early 2023….. yep, hard to come to terms withdeath grieving and unexpected diagnosis..I am on chemo tablets ( hydroxycarbimide) and aspirin…. My only side effects are semi sore muscles and tendons…. Can live with that. Wishing you health and if I can be assistance , dont be shy about contacting me…. We’re in the same boat x

[Cja1956]

I can’t top Hunter’s response but I can tell you my story. I was diagnosed in 2008 at age 52. with ET. My doctor called it a blood disorder. That year it was reclassified as blood cancer by the WHO but my doctor apparently didn’t want to admit it to me. I eventually looked it up. But like Hunter, most people can live a normal life span if managed correctly. Unfortunately, mine turned into myelofibrosis in 2019 and now I’m being recommended for a possible stem cell transplant.

My condolences to you for the loss of your husband. You’ve been through a lot. My best advice is to take one day at a time and not to worry too much about this diagnosis.

[TB66 in reply to Cja1956]

Thank you for your reply and condolences.. it is a lot to take in but finding other people who are in the same position has been a positive experience