Hi everyone, hope everyone is doing ok. Unfortunately I am still battling with my chest and it seems that a neurological problem is going on and I have been referred to a specialist. My Essential thrombocythemia (ET) has somewhat settled with my platelets now at 685 from 821. I had a CT scan on my chest and lower abdomen and it seems now that my spleen is enlarged, near to 19 in measurement. Doctor said that I probably will need a bone marrow biopsy. A little worried now not only about the procedure, but the result. I remain positive though and I will start to think about it when the time comes. Just wondered about other folks experiences with Bone marrow biopsy, enlarged spleen with Essential thrombocythemia (ET).
I’m Ceri, one of the newer Blood Cancer UK staff here. I’m sorry your post has waited a little while for a reply - but noticed you’ve been talking about fatigue on another thread, so I hope the community support there has been useful in the meantime.
You might have already had the biopsy - if so, how did it go, and how are you doing after it?
If it’s still ahead of you, I’m happy to share my own experience (having had one for Hodgkin lymphoma) and to share a couple of relevant resources. I know many others in the Forum community might be able to offer first-hand perspectives too, if they feel willing/able to do so.
Take care,
Ceri - Blood Cancer UK Support Services Team
Thanks for your reply, I haven’t had the biopsy has yet because my bloods were stable when my consultant got back to me. My platelets had lowered slightly, my consultant has now requested another scan on my spleen, I suppose a decision will be made after that. I have read different things about the biopsy and it seems people have different experiences. Yes any info on this would be much appreciated.
Hello there @Fleming97, I’m so sorry to read of that nasty fatigue and the chest pains you’ve been tolerating, and of course living with Essential thrombocythemia (ET). While I’m not a doctor I do live with Polycythaemia vera (PV), which you likely know is closely related to Essential thrombocythemia (ET), and have experienced disabling fatigue and other aches and pains since my own diagnosis. I really feel for you.
Just wanted to say well done bringing down your platelets, that’s got to put less strain on your body and reduce any risks you might have. Perhaps your haematologist mentioned this—mine asked if I felt any pain in my sternum or spleen as apparently they can both start producing blood cells with Myeloproliferative neoplasms (MPN) like Essential thrombocythemia (ET) and Polycythaemia vera (PV). An enlarged spleen can mean it’s swelling from producing blood cells, but this is reversible once the blood disorder comes under control.
However, our lower backs produce most blood cells, hence why bone marrow biopsies (BMB) are taken from there. I had a BMB to check how my blood cells looked at their source and I was apprehensive as I’d read some horror stories on here about how painful they can be. Fortunately mine passed painlessly, I think due to being anaesthetised well and the surgeon was slow and careful. Do ask for anaesthetic as most people around the forum who say their BMBs were fine also mention having had gas and air. I felt a little bruised for a week after but nothing of note.
Funnily enough I saw my haematologist recently and was asking about the results from my BMB as I couldn’t take it all in at the time in 2023. The results show how different blood cells look close up, if they show any differences or deformities, how many cells there are, and also how your bone marrow looks.
Personally, I find the finer details and information in test results comforting. Their realness as opposed to the anxiety of my imagination makes Polycythaemia vera (PV) more tolerable. Perhaps you might find your results a slight relief too? I think you’re wise to remain positive. Something else my lovely haematologist reminds me is that we are more likely to pass away from something other than our Myeloproliferative neoplasms (MPN) than the disorder itself as treatments these days are so successful.
Do let us know how you get on @Fleming97, I hope the fatigue and pains fade soon and your BMB goes really well.
Thanks so much for your message, lots of information there that I really appreciate. At the moment I have lots of eyes on my condition. I am due to be scanned again soon, likely before Christmas. My iron deficiency seems to have appeared again, so i am back on iron meds. My platelets are back at 865 last bloods. This Fatigue is being a nuisance, iron levels low though which is a contributing factor. I will let you know how I get on, another meeting with my consultant on Jan 7th.
Oh you’re most welcome @Fleming97, it’s made my day to have offered useful information. I’m glad you’ve got further checks coming up, I find it’s better for my anxiety to rule stuff out rather than grin and bear it these days. I’ll keep my fingers crossed that the iron medicine will boost your energy too.
Don’t know if this seems feasible, but I found when my fatigue was worst that making sure to get some daylight into my eyes early in the day would help me sleep a little better at least, which improves my energy the next day. I read up on some meta-analyses of what helps with cancer-related fatigue (CRF) and got that tip there.
Keeping as flexible as your body allows can also boost energy, rather counterintuitively. I got into slow yoga after my Polycythaemia vera (PV) diagnosis and do little sessions at home in front of the TV when energy permits. I’m sure you know what gives you a boost—sometimes only coffee gets me going!
I’ll look forward to hearing how your appointment goes in the new year, stay well @Fleming97.
Just following up as I said I’d share my expereince if you felt it would be useful to hear it. I had a bone marrow biopsy taken from my hip under local anaesthetic, and it was much easier than I’d expected (and I’ve always been a wimp when it comes to needles). No pain during the procedure - just pressure and a very odd “popcorn/rice crispies” crackling feeling when they took the sample (strange, but not at all unpleasant). I was a bit sore for a couple of days afterwards, then fine.
I hope the upcoming checks bring some clarity and that the fatigue eases soon, and please do keep us posted when you feel up to it, and if you’d like to.
Thanks so much for your message and information. It’s really reassuring and helpful to receive such information on something I may need further down the line. I am still currently waiting for scan appointments and my fatigue differs day to day. I do get pain almost every day and my abdomen seems to feel uncomfortable pretty frequently these days. I will know more after scans but my consultant did inform me that my spleen will not shrink and it’s more likely to increase in size. I have been told to get flu vaccines has my immune system will be pretty weak. I am on iron meds again now because my levels are low again. Still get out walking my dog though most days and I remain positive and upbeat, it’s the only way right!! I will give you updates when any progress is made.