ET long term concerns

[Bear111]

Hi, I have ET which was diagnosed after a blood clot was found on my brain and blood tests revealed I had a positive JAK 2 result in 2019, I do not know anyone else who has the condition to talk with, when I see my haematologist i don’t always get the time to speak freely about my concerns, I read that ET can sometimes turn into AML, is this more likely if you have had a blood clot and are on Hydroxycarbamide and warfarin rather than just monitoring ? Any advice would be lovely please, many thanks.

[ChillyAsh34]

I have ET JAK2 I am on aspirin and hydroxycarbamide not had a clot thank God diagnosed from routine blood test in june 2021 I seem to be ok on this I live a normal life. Healthy diet ,walk about 4-5miles a day not all at once have a very good quality of life

[Bear111 in reply to ChillyAsh34]

Thank you for taking the time to respond I really appreciate it.

[Wyebird]

Welcome- diagnosis is pretty scary. I had a stroke 10 years before ET diagnosis so that put me at high risk and meant I went on to Hydroxicarbomide. I was already on clopidogrel. The odds of our illness progressing are low.

My understanding is that no one can predict progression it is not related to the level of medication either.

I try and live for the moment. Don’t put off want you want to do.

[Bear111 in reply to Wyebird]

Thank you very much for replying to my post, it has really helped, I need to relax more and worry less.

[Wyebird in reply to Bear111]

When you have the energy minimise your work load, declutter, low maintenance garden. I’ve got a cleaner two hours a week now.( I know I’m fortunate ) this allows me to do the exercise I choose - yoga and swimming and gentle walking are mine. Exercise helps combat your fatigue.

[Bear111 in reply to Wyebird]

Thank you for your great advice, I have recently cut a day at work which has made a huge difference to my well-being, most of the time I am okay, it’s just when my blood results are a little off I panic and there isn’t anyone to speak with who is experiencing the same condition, sometimes my skin is so itchy and I get aches and ocular migraines, I wonder if they are linked to my ET but am never sure, posting on this forum has already made me feel a little calmer, thank you.

[Wyebird in reply to Bear111]

It’s amazing how what you think is petty results in others also afraid to voice their query. My body told me when my platelets went above 400! In 6 years of being on hydroxi and blood tests approx every 10 weeks I think I was wrong twice. I don’t suffer with symptoms other than fatigue. I believe what you have mentioned are symptoms. Post them you’ll be surprised you are not alone and you might even get valuable hints and remedies. You are no longer alone. You are part of an MPN family. 💝.I also recommend you keep a copy of your blood tests. You might find you can link your bloods to your symptoms.

[Bear111 in reply to Wyebird]

Thank you so much, I think I will post my symptoms and see if others recognise them, my haematologist often shrugs my concerns off, thank you again.

[Scaredy_cat]

You've found the right place to share worries about MPNs.I had a clot in my portal vein 25 years ago aged 43 and was eventually diagnosed with ET jak2. Until recently all I was on was aspirin and had no further clots so not all is doom and gloom.

[Bear111 in reply to Scaredy_cat]

Thank you very much for your response, it really is helping reading other peoples experiences, it can occasionally be a little overwhelming but I must say I am realising that I am not alone.

[hunter5582]

I was diagnosed with ET about 30 years ago. It progressed to PV about 8 years ago. I have lived good life and continue to do so at age 66. There have been some challenges to deal with, particularly in the last several years. These challenges have been managed and life continues to be good.

It is true that ET can progress into another form of MPN. Progression into PV is one possibility. Progression into AML is possible, but is not common in ET. Usually progression into AML is through progression to MF first. This does occur, but again, the vast majority of people with ET do not progress into MF/AML. There is a truism that you are more likely to die with ET than from it.

The primary thing to be concerned with is your history of thrombosis. In this case blood thinning medication and cytoreduction are clearly indicated. Hydroxycarbamide (HU) is one of the two first-line choices for cytoreduction. Pegasys (or Besremi in clinical trials) is the other first-line choice. HU and PEG each have their own risk/benefit profile that you can review. One thing to note is that there is evidence that the interferons like PEG may reduce the risk of progression into MF.

There are also other choices for blood thinning should you find warfarin does not suit you. Warfarin is a DOAC. There is another class of blood thinning medication called NOACs (e.g. Eliquis) that are an option should you need to look into options.

Hopefully you are already seeing a MPN Specialist rather than a regular hematologist. While important for all of us, it is vital to ensure you receive optimal MPN care when you have had a serious MPN symptom.

All the best.

[Bear111 in reply to hunter5582]

Thank you Hunter for your wise words, I was hospitalised in February for 5 days for a nose bleed that wouldn’t stop, I did speak with my haematologist with regards to changing my anticoagulation after the event but unfortunately because I have Central Venous Sinus Thrombosis there hasn’t been enough research with the newer blood thinners to date.

[Itchy-Scratchy]

Hi, I would echo ChillyAsh34. I am nearly 62, on a whole food plant diet, ET, Jak2 and do about 13-15000 steps every day and some 'gyming', am only on aspirin so far and mostly feel great. The WHO wrote some guidelines on MPNs saying you jump into high risk at 60 but prof Harrison at Guys told me it is more likely 65, especially if you look after yourself. But make sure you are under an MPN specialist who will likely give you a Bone Marrow Biopsy so they can monitor if you progress to PV or something else.

[Itchy-Scratchy in reply to Itchy-Scratchy]

PS Itching is part of the disease sadly. Try an emollient (e.g. Diprobase) for the itches and don't have too hot showers / baths. I get mine on prescription.

[Murdoch01]

I have ET Jak 2 and on Hydroxycarbamide and blood thinners after a blood clot in the lung in 2018, I go for blood tests every 3 months and nothing has changed since then. As far as I know there is a small chance of getting AML but that is all I know, not much help but at least somebody that are in the same boat.

[Bear111 in reply to Murdoch01]

It is a great help hearing from others who are dealing with the same condition, thank you very much for taking the time to reply.