ET

[Jody00]

hi 41 years old ive had ET since 2016 but only found out when had my bloods done march 2020 when I got diagnosed my platelets count been down up last few months was on 497 then 596 then 679 now back down to 597 am tested for jak2 take 75mg asprin a day to live a,healthy lifestyle and a diet a have my bloods done every 3 months and check up over phone at moment with my haematologist,long terms complications are rare and can include progression to myelofibrosis or acute myeloid lumkemia this is all a know so far but am not too bad in myself at moment just have check ups every 3 months.

[hunter5582]

I was diagnosed with ET about 30 years ago when in my early 30s. It progressed to PV about 7 years ago, maybe earlier. At age 65 still alive and kicking! Sounds like you have adopted a wait and see attitude with minimal intervention since you are mostly symptom free. There are plenty of great resource like Voices of MPN where you can get accurate information, as opposed to the gloom-and-doom stuff you sometimes see. If you are interested, here a couple of links to some great presentations.

Several presentation worth watching (Molecular Biology, ET, and others)

mpninfo.org/conferences/201...

From my old consultant Dr. Spivak. Short and worth watching

vjhemonc.com/video/9rf073wi...

While about PV - can apply yo PV too.

vjhemonc.com/video/4kie_7r9...

All the best to you.

[Pat032018 in reply to hunter5582]

Thank you very much Hunter5582. You have been providing me (and I am sure many others) excellent references/resources for me to evaluate my PV/ET. Hope all goes well in journey! God Bless.

[Pat032018 in reply to Pat032018]

Hi Hunter5582, I figured that you had tried HU three times in the past but withdrew from using it; and this is not aligned to the "spontaneous" reaction/response from my hematologist who said that once a patient gets receptive to using HU, then a subsequent withdrawal from this medication is not not "good" (not sure of the medical consequences). I imagine it is reasonable to think that someone responding well to HU should not withdraw from it.

However, like you and many others, I am also concerned over the long-term effects of a "light duty chemotherapy".

Did you have difficulty or bad reactions from withdrawal of using HU?

I think that I will start my HU for the first time after my PV diagnosis from 3 years ago because my platelets hit 1,100 based on the results today.

Thank you very much for your anticipated response.

[Doggy1903]

Thank you for your post. Welcome! I am sorry you have had this strike your path in your 40 s. However you will find fantastic help and advice here. Sounds as if you are very well looked after. I am older 62yrs and diagnosed aged 60 with ET. Also running on Hydroxycarbimide. I find the haem teams very friendly and supportive. Good that blood tests are 3 monthly. I have sent questions to a forum asking how likely is our condition to change into PV or progress and can this be predicted from changes in the bone marrow.

Hope you keep well eating and exercising well ,lots of water seem a safe starting point.

[Cja1956]

Hi, Jody00, I was diagnosed with ET Jak 2 positive in 2008 at age 52. My platelets were about 600. I think my hematologist rushed to treat me with Hydroxyurea at the time, because the side effects seemed to be worse than the disease. Three month appointments seemed to be the norm unless I had an incident. Around 2016 he told me I had PV, and put me on Jakafi. In 2018, my hmg started to drop and my platelets were in the 700’s. I was feeling really sluggish and my brain fog and fatigue were terrible. I found this sight and in 2019, I finally went to an mpn specialist, who told me I had progressed to MF. I guess, to summarize, because you’re young and seem fairly healthy otherwise, you seem to be on the right path. There’s also been tons of research since my diagnosis and you will benefit from that.

Take care and wishing you all the best.

[Mazcd Partner MPNVoice]

Hi Jody and welcome to our forum. I would advise that you read the information we have on our website mpnvoice.org.uk about MPNs, I am sure it will answer many of your questions, I would also advise that you read the real stories, these can be very helpful and informative. And ask us questions, we are all here to help and support you, we understand how you are feeling about the possible progression from ET to either PV or MF, we all think about it and know how you are feeling. Best wishes, Maz

[Jody00]

thankyou everyone for all your information il will check out,I do get quite tired myself and brain frog sounds bit like me now a days to say am 41 but yes my haematologist told me wouldn't be starting me on treatments tell my platelets count gets over 1,200 so at moment am on 75mg asprin and if a get any symptoms inbetween appointments then to let them know and to keep on with a healthy lifestyle and diet but thankyou to all for the information xx