Essential Thrombocythemia (ET)

Hi i have recently been diagnosed with a rare blood cancer Essential Thrombocythemia (ET). The exact causes of this type of cancer are unknown. Some researchers believe this could be caused by past exposure to ionising radiation like medical x-rays or nuclear fallout or some chemical substances such as Benzene & Toluene. I have worked for over 25 years in the protective coatings industry using all types of substances related to the ones mentioned therefore putting my illness down to this. I was just wondering if anyone else is suffering with the same illness on this forum.

  • My goodness, where did your cruise  go?

    You are all so  up-and -going!  (Just see what Rocco is up to!)

    Wonderful.

    Lots of Love

    Jdog

    PS sorry about the covid though.  Please let me know how that goes.  Presumably you have all the new reatments.  I've had several letters from NHS Scotland about what to do if I get it.

  • Hi Jdog - yes, I'm still around. Recently had my 5th vaccine, and as yet haven't had Covid (the only one in my family who hasn't). Still being careful and wearing a mask inside crowded areas. I think it's inevitable that I will catch it at some point, but my nurse has said to let her know if I test positive on lft and she'll get anti-virals courriered to me. The results from my recent blood test showed that my bloods are stable, so things are fine all round really. Hope that you and your family are all well and happy.  

  • I ve only just got back. The cruise was round the Med. I haven't done a Pcr test yet  only a lateral flow,not sure if  Im supposed to contact anyone to have those drugs mentioned. Or if it applies to the Omigrom variant and if you've had 4jabs now?...

    I ll phone 111 and see what happens?.. Of course it's bank holiday?.

    Take care all

    Sabie

  • Hi Sabie - this recent article from the MPN site might help you when you phone 111 to get meds. The important thing seems to be to tell them you have a blood cancer, then they'll get a doctor to phone you for more information. Have a list of your medication and details from your initial ET diagnosis ready.  Wishing you better soon

    www.mpnvoice.org.uk/.../

     

  • Thanks Chorister

      Doctor says get in touch if I get worse.Thinks my 4th jab is keeping it in check as I m not breathless.

    Keep in touch

    Sabie

  • Hi Sabie

    How was the med?  I've never been on a cruise and I love spring here so much that I wouldn't want to be anywhere else, but l would like to see the med again.  Maybe.

    I'd had 4 jabs by last Christmas.  Now I have a spring booster jab scheduled for 13th May.

    Hope you stay not breathless.

    Love

  • Hallo Chorister,

    Very glad to hear from you.

    My bloods are stable too and I haven't had covid either in spite of my daughter's having it.  It was very mild for her and she is testing negative now.  I seem to be fine.

    Like you, I think I'm bound to get it in the end - but I'm really surprised that I haven't.  After all, I live with my daughter who works at a famous visitor attraction with huge foreign interest.  She also rehearses with orchestras and plays and sings in groups . . .All the music lthings have been extremely careful, with proof of negative test required before each rehearsal and her workplace has been the same, although several people there have had covid and stayed away till better. 

    However she got it in the end. after a public performance last weekend. Now she is testing negative again, had it very mildly and seems to be fine and isolating here at home.  However, in 2 weeks time she is due to play 2 performances of a cencerto (Finzi, clarinet); she should be up for it, but the conductor presently has covid too!  Goodness knows what will become of this.

    Best of luck.

  • Evening Jdog - so glad that you're fine, and that your daughter's bout of Covid was mild. We've been very careful in our choir too - all taking a lateral flow test before we rehearse or perform together. Sadly not all musicians take the same precautions. We were performing with others at a large local event recently and three of our members developed Covid a few days later. Fortunately they recovered fairly quickly, even the lady who is immunocompromised (she was given anti-virals). I do hope that the conductor of the orchestra your daughter plays in recovers in time for the performance. Not being able to perform after all their hard work at rehearsals would be awful for them. 
     

    Take care. 

  • This is me right now. I'm so confused as Dr said it wasn't cancer. That's why I'm now in here reading all these chats and freaking out :-(

  • I went through this around 18 or so years ago, but with Polycythemia, which is in the same group of disorders as ET.

    I'll try to explain it from the little i remember of that time. These conditions are myeloproliferative neoplasms, which are a type of blood cancer. There was once upon a time they weren't classed as cancers, but they were re classed a good few years ago, maybe, a handful of decades ago.

    I get cancer is a scary word, and nothing anyone can say will remove that far. However, not all cancers are equal.  These cancers are very slow growing, and with treatment, the vast majority with these conditions live a normal life as they would in the absence of the condition. Treatment ranges from monitoring, medication, to simply getting excess blood removed depending on your type.

    Something that stuck in my head when going through testing for polycythemia was something the haemotologist sad, and it put everything in perspective. As much as you wouldn't choose to have it, how would you react if you were diagnosed with type 2 diabetes? Would you be freaking out or just get on with the treatment? I opted for the latter. Diabetes type 2 is so prevalent nowadays, a lot of folk think it's a nothing condition. The truth is, the haematologist said, if i was diagnosed with Polycythemia on that day, and someone in the next room was diagnosed with diabetes next door at the same time, the odds of me outliving that other person were a lot higher.