Just diagnosed with Essential Thrombocythemia

[Beachchik]

Hi everyone, I'm new here. I cannot tell you how happy I am that I found this site and how much reading all of your responses to others have helped me to remain calm. I was told today that I am being referred to a hematologist and that I have Essential Thrombocythemia. I'm so anxious and afraid of what is to come, guess the unknown is more forboding to me than knowing. Unfortunately, I googled this to start and it scared me to death. I will visit the sites that you guy's suggested and try to remain positive. It's nice knowing it's not a death sentence.

[WileyFrench]

I was diagnosed over a year ago, and have been on hydroxyurea since July 2018. Like you, I unfortunately Googled information at the start, and it's enough to make you want to give up - it's contradictory, and a lot of it is out of date. This site has been SO helpful for me; there are loads of people on it who've had ET or another MPN for decades, and are doing just fine. A death sentence? No. A bloody inconvenience? Yes.

[Beachchik in reply to WileyFrench]

Thank you for your response, I feel better already just knowing your there.

[Nickthedevil]

Welcome to the forum. When I was diagnosed with ET 6 years ago I was terrified like you. Finding this site was the best thing that could have happened. Ask as many questions as you can, there is always someone here to help you or point you in the right direction. Good luck with your haematology appointment.

Karen

[Beachchik in reply to Nickthedevil]

Thank you for your kindness and your support. All the information that's available seems a bit overwhelming at first. My platelet count was 493 which isn't horrible so I'm hoping I am starting out with ET and not an MPN right off. Either way, It's a blessing knowing you guy's are out there. Take care

[mlkirchoff in reply to Beachchik]

ET is an MPN, but the "best" of a nuisance lot.

[Doggy1903]

Welcome to this wonderful forum. I was diagnosed last year and pleased to say, I am settled and very well looked after. Started Hydroxycarbamide and all well. The hospital team are excellent and there is also a specialist nurse you can phone anytime for advice. With good support, it seems we can lead a normal life and risk is much reduced.

Please feel welcome to ask anything.

[Beachchik in reply to Doggy1903]

Thank you, I am so glad your doing well. It's an inspiration.

[Cja1956]

I’ve had ET now for 11 years and the first thing my hemo told me was not to go onto Google. I just found this site a few months ago and it is the best thing I ever did. Everyone is very supportive because they know what you’re going through and you can ask anything. Good Luck on your journey.

[Doggy1903 in reply to Cja1956]

So pleased you are managing after 11 yrs. Yes google is a blessing and a disaster!! At least one of the doctors directed me to MPN and I am so pleased. We are all a team of unusual people.

I have been fortunate to have a buddy in my own home town , fantastic support.

[Cja1956 in reply to Doggy1903]

Yes, it’s not a team we want to be on, but I am so grateful for the support.

[lizzziep]

Yes, I too made the mistake of Googling ET when I was diagnosed around 8 years ago. I thought I'd be dead within the week, fortunately 99.9% of what I read was complete rubbish! I've been on Hydroxy and now on Anagrelide, both can have side effects, and it differs between everybody who has it! There are loads of questions that I needed to ask and most of them have been asked on here. I needed to know if I could still dye my hair on hydroxy - yes you can! No questions are too silly - ask on here, someone will know the answer.

Best wishes for the future

Lizzie

[Beachchik in reply to lizzziep]

The hair dying is of definate importance! I hadn't even thought of that one yet. Thanks for the input, nice to know that any question isn't a dumb one.

[Helena303 in reply to Beachchik]

When I started Hydroxy the they put it up to 1000 a day. I though oh no!!! My hairs going to thin and may fall out in clumps. I’ve been on it 5 months now. I usually tint my roots every 6 weeks. But I started to worry it was to much. So I leave it for about two months now. Let the roots show. I really look after my hair more now. I use gentle shampoo. I big comb as not to tug on it. I stopped using straighteners much unless I’m going out. I put leave in conditioner on. My hairs thin anyway. But I do find this works for me. I think the Et has aged me though. Think my face is looking more gaunt since having Et. But they don’t do Botox with Et. So just keep moisturising my face as I’ve been doing this since I was 15. Plus I’m granny Et now. Just having a joke.

[Beachchik in reply to Helena303]

Thank you for the information. Enjoyed your sense of humor.

[Wychwoodbabe]

Diagnosed with ET 35 years ago and am now 68 and still here and fine; progressed to MF 3 years ago but that’s ok too! Had all treatments under the sun but led a fairly normal life. Please try not to worry🥰🥰

[Cja1956 in reply to Wychwoodbabe]

Wow! Your story really gives people hope that this is a manageable disease and that you can live many years with ET. How are you doing now with your MF?

[hunter5582]

I am 63 and have had an MPN for over 30 years. Progressed from ET to Polycythemia about 6 years ago. Don't let Google scare you needlessly. Most of us face more quality of life issues than length of life issues. Sure there can be issues, but it can be successfully managed. There is lots of new research and emerging hopeful approaches. Be sure to find a knowledgeable hematologist with MPN experience. Not all docs are have the expertise you need. You can check here for some patient-recommended docs mpnforum.com/list-hem/ . All the best.

[Beachchik in reply to hunter5582]

Thank you for the tip's. Fortunately, we have a wonderful hematologist that my family has used in the past and who is going to see me. That in itself feels like a blessing.

[hunter5582 in reply to Beachchik]

Finding a great doc is truly a blessing. I recently changed docs (at his recc) as the old hemo I was using did not feel up to managing my case. I liked the old doc, but the new one is more hemo than onco and a better match for me with an MPN. I also involved an MPN Specialist from the list as a consultant. The "Specialists" know way more than the standard hemo-doc about MPNs. Most hematologist only see a handful of MPNs in their career. The consulting hemo-doc ihas been a real asset as he is much more up-to-date on emerging practices and my every-day hemo-doc is willing to work with the consultant. Hope you find and keep a great doc.

[Cja1956 in reply to hunter5582]

I agree with you, hunter. Life expectancy is not a big issue, but quality of life is definitely affected. We are all trying to find our way in that regard. I got diagnosed with ET at age 52 about 11 years ago, but Now that I look back on my life, I wonder if I had it earlier because I was a teacher and I had to leave teaching because of the fatigue and brain fog I felt every day. I now sell insurance where I can make my own hours and I can work out of my home. Similar to you, I got diagnosed with PV in 2016. I take 1000 mg hydroxy, 20 mg Ruxolitinib, and 1 baby aspirin per day.

Take care.

Cindy

[Beachchik in reply to Cja1956]

I also have fatigue and brain fog and wondered if that had to do with this diagnosis. Glad to hear your doing good and that you have a job with flexible hours.

[Cja1956 in reply to Beachchik]

Thank you.

[Mazcd Partner MPNVoice]

Hi Beachchik, welcome to our forum, glad that you have found us. I can't add much other than to say, read as much as you can on our website mpnvoice.org.uk and ask any questions you have, we will do our very best to answer them for you. Best wishes, Maz

[Beachchik in reply to Mazcd]

Thank you for the welcome, I will be sure to keep up with the mpnvoice website.