Newly diagnosed with ET.

[Jonnymitts]

Hi I have recently been diagnosed with ET after many blood tests and a bone marrow biopsy though just on aspirin for now with a follow up in 3 months. Platelets have gone from 700-1100 in 6 months also CALR positive.

[JediReject]

Hi Jonnymitts welcome to our Forum. . Sorry to read of your recent diagnosis but , there's always a but, it's good that you have a confirmed MPN diagnosis as many are hard to pin down. I too would put a sad emoji after BM Biopsy , not the most pleasant experience. You may well find you need only aspirin for some time to manage your ET. There are more members of the Forum with ET than the other MPNS so there's no shortage of sound advice should you need it. ,

Cheers Chris

[Jonnymitts in reply to JediReject]

Thanks for you reply as I am still learning about ET and MPN's and so far finding friends and family don't know anything about them, so hopefully I will find more about it through this forum!

[AndyT]

Hi Jonnymitts and welcome - I was diagnosed 13 years ago with ET and am CALR+ too. Stayed on aspirin only for 12 years then started on Pegasys last October due to rising counts and reaching 60. Counts are back down to 330 and no major side effects so I'm pleased with it so far.

As Chris said there is loads of experience here so ask if you have any questions - and use the MPN Voice website for information as it has lots that is useful in understanding ET and its management.

All the best.

Andy

[Jonnymitts in reply to AndyT]

Hi Andy

Many thanks for your reply and info and getting your counts down to 330 you must be very pleased with that!

Many thanks and good luck to you with the rest of your treatment.

Jonny

[Fandango_1 in reply to AndyT]

Hi AndyMy wife has ET Calr 2 mutation.

We found out It casually after routine blood analisys, in october 2023.

We are from Rome.

As she has not still 60 years ( she Is 56 years old), not previous stroke episodes and platelets number about 1 milion and 250.000, so below 1.500.000, she Is assuming until now, only Cardioaspirin; she has not Von Villebrandt diseases.

Can i ask you,

- as you have having ET for 13 years, assuming only aspirina( as my wife), during these 13 years, how has been the maximum Number of platelets you have had?

- during these 13 years, have you done only 1 BOM i suppose, is it so?

- Assuming Pegasys, have you had any side effect?

Thank you

Gian Piero

[AndyT in reply to Fandango_1]

Hi Gian Piero,

My maximum platelets while on aspirin only, were about 1.1 million. Like your wife I was told that was OK while under 60 years old but as I approached 60 the limit was reduced from 1.5m to 1m and I started treatment.

I had one bone marrow biopsy shortly after my initial diagnosis, mainly as there was no genetic testing in those days. My doctors say no need to repeat it unless my blood counts all start to drop and they suspect a transition to MF - thankfully no sign of that yet!

I have had very few side effects from Pegasys - some dry skin and itching but I manage those with simple creams and antihistamines when needed. I’m also a bit tired a few days after I inject - lasting 24-48 hours. I now only inject once every 6 to 8 weeks, so that is easy to manage too.

Best wishes

Andy

[Fandango_1 in reply to AndyT]

Ah ok AndyThank you very much

Best wishes 🤗

[katiewalsh]

Hi Johnnymitts. Welcome to our community. You'll find lots of friendly people here and good ideas. And no question is too dumb to ask. CancerUK (I hope someone will correct this if I have it wrong) is a good source of info. As is Patient Powet. Katie

[Jonnymitts in reply to katiewalsh]

Hi Katie

Thanks for your reply and info I will check them out. Best of luck with your treatment.

Many thanks

Jonny

[katiewalsh]

PS. I should add that I have ET and am JAK positive. I'm on a baby aspirin, Eliquis (similar to warfarin but protects me better) and Hydroxyurea. I've had many blood clots which is why I'm on these meds. I'm 65 and was diagnosed a few years ago. And this forum provides a wonderful feeling of support and kinship. Katie

[Nickthedevil]

Hi Johnymitts and welcome to the forum. I too have ET, jak2+, diagnosed 3.5 years ago. I have found this site a huge help and am sure you will too. Good luck and keep well. Karen

[Jonnymitts in reply to Nickthedevil]

Hi thank for your reply & seeing so many other replies so quickly has really cheered me up and it helps knowing others are out there as once I've told a few people they seem to forget and carry on as normal. Many thanks and good luck to you as well!

Jonny

[heathermc]

I'm same as yourself but still on asprin. I go every 3 months tats routine I believe for this condition. Just ask on here if something bothers or concerns you.

[Jonnymitts in reply to heathermc]

Hi we sound similar at the moment as it look like i will be going every 3 months though I have high blood BP so my GP seems a bit more keen to see me more often now. How long have you been on aspirin?

Jonny

[Steph_1976]

Hi Johny, I'm post et, stage 1 mf and calr positive. I'm in the uk just started on jakavi but on a few other meds too. There is lots of information on mpn's, lots of scary stuff too but the Macmillan site is awesome for information and not too clinical either, mpn website is also a good source of info but please ask if I can help x

[Jonnymitts in reply to Steph_1976]

Hi Steph

Thanks for your reply! I am in the UK in north west London. Yes quite scary when you first googling it especially when you see the C word but once you get past that and they explain it a bit more so not so bad i guess? Im not sure what your stage is yet compared to mine so please forgive my lack of knowledge as I'm still learning about MPNS. Though thanks again for your reply.

Best of luck Jonny

[conno61]

Hi there. Like yourself I am recently diagnosed with ET and calr positive. Like yourself I find family and friends have never heard of this condition so don't really understand it which is frustrating as it's hidden people don't realise there's anything wrong with you. Not easy to explain either as it's hard enough for us to get our heads round it. This is a great site foron sufferers with lots of info so you don't feel alone. You didn't say how old you are ? I'm 54 and have a platelet count of around 900. I'm also only on aspirin. You don't get any medication it seems in the UK till you hit 60, or are unlucky to have a stroke or heart attack. Best wishes, Ian.

[Mazcd Partner MPNVoice in reply to conno61]

Hi Ian, there are many people under the age of 60 who are receiving medication other than aspirin for their MPNs who may not necessarily have suffered a stroke or heart attack, they may have been prescribed medication due to symptoms they may be experiencing, for example I have ET, I am now 56 and when I was first diagnosed in 2003 I was prescribed only aspirin, but because of the symptoms affecting my quality of life I was prescribed Hydroxycarbamide 7 years ago, and I have not suffered a heart attack or stroke. Maz

[conno61 in reply to Mazcd]

Hi maz, so far I have only experienced dizziness and headaches and I can cope with this. I'm back in September to the hospital where I will want to know what my clotting percentage is. Not very happy with my haemotologist to be fair as he seems very non plussed to say the least and has basically told me very little. I seen the nurse last time who told me more than he ever has. My family history is poor in relation to coronary heart disease and I have never been asked about this. With a count of 900+ I kind of feel this should have been factored in.

[Jonnymitts in reply to conno61]

Hi Ian, I am 50 and was on holiday when i got the call from my GP on my 50th birthday saying he had spoken to the haematologist and thought it would be a good idea to start me on aspirin which was a great birthday present! I also have high BP which needs to be controlled so having a great year so far! Thanks for your support and hope they come up with something before we hit 60!

[socrates_8]

Hey Jonnymitts...

Welcome to our rather exclusive club...

I was only recently diagnosed as well (May 27/2016), with Post ET (pre-fibrotic) Myelofibrosis. I turned 57 a day after confirmation of my condition, although I did suffer from a TIA (minor stroke) in August 2015. Hence, I am considered high risk and was started on Hydroxyurea (HU) 500mg with a BPT count of c.1700. The HU was knocking me around a tad and after an initial increase to 1000mg per day, I have now commenced on Interferon injections x3 per week.

I do seem to have a range of side-effects, however, whether they are all due to the drugs or to my condition is a bit of a mystery at the present, as it seems to be a little of both, in my view...

Fatigue, nausea and sleep deprivation are possibly the worst of it... oh and my enlarged spleen. The change to the Interferon is supposed help reduce that discomfit, but nothing much happening yet...

I am also CALR+ and my last bloods were down to 981. I have also been experiencing some chest pain, especially of a night, and I undergo a stress test tomorrow to see if everything is alright. Most of the time I am more than a little concerned that I am a bit of a walking 'time-bomb' meaning a stroke waiting to happen etc...

I am from Sydney, Australia but I have found the benefits of talking to others here extremely beneficial.

Best of health to you Jonny.

Steve

[Jonnymitts in reply to socrates_8]

Hi Steve,

Thanks for your reply! I am still coming to terms & learning all the acronyms and you seemed to have mastered them already! i was nearly started on the Hydroxy but they have decided to wait until i am 60 so probably hedging their bet a bit Good luck with your treatment! Have you tried any relaxation or yoga for the fatigue & sleeplessness. Someone has suggested Yin yoga for me and i am definitely not a yoga type buy I will give anything a go once so will try that in September.

Best of health right back at you & thanks again!

Jonny

[Hidden in reply to Jonnymitts]

Hi Jonny, it's been very interesting reading everyone's comments to you. It seems I am one of the lucky ones. I am 64, diagnosed last September! I was put on aspirin as soon as the GP noted my platelets were elevated. 747 approx. I am from NZ. I do not know of anyone here with ET, so this site as been great for information. 65 is the age for HU over here. My platelets have actually decreased. I have no side affects at all. Long may it stay like this!!! Good luck with your research. Lyn

[jillydabrat]

As everyone has said, welcome to the MPN family. You will find all the answers you have from somebody or multiple somebodies on this site as we are always eager to help anyone with this disease. Hope you find what you are looking for, keep in touch, Jill x

[Jonnymitts in reply to jillydabrat]

Thanks for the welcome much appreciated, feel like I'm part of the family already!

Jonny

[Mazcd Partner MPNVoice]

Hi Jonnymitts, welcome to our forum, as you can see we are a very supportive group of people, so please ask any questions that you have or share any concerns. I would advise you to read the information on our website mpnvoice.org.uk, it can be a very scary time when you are first diagnosed, it is a lot to try and understand and as MPNs are very rare not many people know about them or understand them fully, but please try not to panic or worry too much, I know that's easy to say, but I do know how you feel, but in general people with ET without severe clotting or bleeding complications have an excellent chance of living out a near-normal life span if properly monitored and treated as necessary. And other than aspirin many people with ET don't need treatment for many years, but eventually most do need some kind of further treatment, your treatment plan will depend on your own unique situation taking into account symptoms you may be experiencing as well as any lifestyle risk factors like high blood pressure and whether or not you smoke. Best wishes, Maz

[Jonnymitts in reply to Mazcd]

Hi Maz, Thanks for the warm welcome and info. It look like i will be having 3 monthly blood tests for now and I am being seen at the Catherine Lewis centre in Hammersmith who so far have been great! I do have high BP which my GP has taken a bit more of an interest in recently since being copied in from the haemetologist so I will be working on that with exercise and watching what I eat before next appointment, fortunately I don't smoke!

Many thanks

Jonny

[mhos61]

Hi jonnymitts and welcome. I was recently diagnosed with ET (jak2+). I am 60 so considered high risk and as such have commenced oh hydroxy which is bringing my platelets down. Everyone here is helpful and understanding.

Good Luck

Mary