Hello there @SBgsy, welcome to the forum. I’m glad you found it, it’s great to share our experiences here. Sounds like the original poster @Jules17 had the BMB and was okay, hope it’s still going well now Julia? You too @Radius.
I’m intrigued by your mention of a “chill pill,” sounds very 2001: A Space Odyssey to me! We forum members can’t advise on medical matters, although maybe you’re referring to gas and air? Apologies for my misunderstanding!
Many people around the forum have talked about our experiences of BMBs, I’m sure you could use the search box above or Related Topics below to find more. My own BMB thankfully passed uneventfully due to the surgeon being very slow and steady and also the very strong anaesthetic I was given in my back!
May I ask how you’re getting on since diagnosis? I can direct you to information related to your specific diagnosis if you’d like to share, but no pressure. Do keep us posted about how you get on @SBgsy.
Hi all, yes I had the bmb back in November last year. It seems that people’s experiences of it vary. I found it very invasive and quite upsetting but that was the first time and until you’ve had it, you don’t know what to expect, you can only go by what you read. However, I’m glad I had it as it confirmed that nothing more sinister was going on and the Consultant was happy with the outcome so I just continue on the aspirin until I hit 60 in 2 years.
Hi @Mandylee73 ,welcome to the Essential thrombocythemia ('ET') club. It can be quite emotive when you first find out you have it, you’ve never heard of it and wonder how you got it.
I’m coming up to a year in and I have to be honest it’s not changed my life at all. Like you, I take 75mg aspirin a day and that’s it.
I’m followed up every 3 months, so it’s very positive for you that after your follow-up in August, your Consultant has suggested you go back yearly for a check up.
Hopefully you feel well in yourself and haven’t been negatively impacted by this diagnosis. I wish you all the best in your journey x
I was recently diagnosed with Essential thrombocythemia ('ET') CALR+ and am taking aspirin and a daily hydroxycarbamide 500mg capsule. So far so good and I haven’t noticed any side effects. I’m not sure how strong my dose is or as yet what the effect on my platelet count is - I should find out fairly soon.
I’m being treated at Leicester Royal Infirmary, maybe alongside others on here?
My arm is a bit like a pin cushion with all the blood tests - hopefully these will become less frequent in time. I had a bone marrow extraction which I found quite painless with the added benefit of puffing gas and air - like having a drink without a hangover as the nurse described it!
Welcome to the forum @Mandylee73 and @daveinleics and hello again @SBgsy, really sorry to read of your Essential thrombocythemia ('ET') diagnoses. I’ll just add the Blood Cancer UK information about Essential thrombocythemia ('ET') here for you, should you fancy a read: Essential thrombocythaemia | Blood Cancer UK
Isn’t it interesting how varied the treatments can be even with a similar diagnosis? In 2023 I was diagnosed with Polycythaemia vera ('PV') which is very closely related to Essential thrombocythemia ('ET') as they’re types of Myeloproliferative neoplasms ('MPN'), and funnily enough @daveinleics I also take aspirin and hydroxyurea and have occasional phlebotomy.
I know exactly what you mean about pin cushion skin! If it’s any comfort my haematologist likes to remind me that he’s trying to free me from phlebotomy. Perhaps it’ll be the same for you. I found that once my medicine slowed down the blood cell overproduction I needed phlebotomy far less. Perhaps you’d like to read about Myeloproliferative neoplasms ('MPN'): What are myeloproliferative neoplasms (MPN)? | Blood Cancer UK
If any of you would like to find others living with Essential thrombocythemia ('ET') just use the search box at the top or Related Topics below. I know there’s a lovely thread of folks who share their experiences here: ET diagnosis finally sinking in
Really sorry to read yours was so upsetting @Jules17, I can empathise as any kind of operation for me feels invasive. Have to really psych myself up to go in, but my imagination has usually been worse than the reality of the surgery. Glad I had the BMB done like you, don’t have to think about that again! I hope your treatment continues to go well and minimally as it is, thanks for checking back in!
Hi @Jules17 , I have literally been meaning for months to check in with you to see how you are getting on? I’m conscious we are both 14 months in now to our diagnoses, seems mad really how quickly it becomes the new norm. I’m still on interferon, tolerating the treatment well but pretty slow to work in terms of impact on bloods but I’ve got wriggle room as my levels aren’t that high. I had a bone marrow biopsy earlier in the year, it was bloody painful! took 3 attempts and ended up on morphine for a few days after but at least I’ve got a baseline of everything from the the BMB for the future. There were no nasty surprises from the BMB, just confirmed the Essential thrombocythemia ('ET') really and allele burden etc. Anyhow, please do let me know how you’ve been getting on? Take care Elaine
Hi @LadyB , Lovely to hear from you – I know, time flies and you do find yourself just getting on with it. It’s good to hear that you’re tolerating the Interferon, I’m guessing the platelets are coming down albeit slowly? I’m still just taking the 75mg aspirin and at my last appointment at the end of June my platelets had come down, so I’m still classed as very low risk which sits fine with me. They also said I could go to 4 monthly appointments instead of 3 so I’m taking that as good news and I’m not going to argue with that!
So you went for the BMB, sounds like you had a bit of a rough time, 3 x attempts and then having to go on Morphine – I can’t think of the pain you must have been in. I hated every minute of it and hope to god I never have to go through it again. If I do, I’m going to insist that I’m put out. The good thing is though, like yours, it confirmed the diagnosis of Essential thrombocythemia ('ET') and fortunately nothing else so it does put your mind at ease from that perspective.
How are you finding daily life - are you still suffering from the fatigue? The only things I seem to experience is some dizziness every now and again and getting really hot at night, which I also put down to my age and time of life! The Essential thrombocythemia ('ET') hasn’t had an impact at all really on my life and I’m hoping it stays that way. It’s always there at the back of my mind and there’s constant reminders like taking the Aspirin every day but I’m just thankful that at the moment it’s stable and I’m OK.
I hope you continue to tolerate the Interferon and you stay well.