Hi I don’t post much but I read daily. I was diagnosed with ET JAK2 almost two years ago. I take six Hydroxycarbamide capsules weekly, and an aspirin. I noticed this small bruise on my neck about six weeks ago, but didn’t bother about. I got a photograph taken and on the photo the bruise looks like a lump. Has anyone any idea about this, when I visit docs with anything they don’t know anything about ET. I see haematology in two months for bloods. I did see privately an MPN specialist and he agreed with haematology, about the treatment . I live in Scotland and there us only on MPN Specialist. I will be 80 years next month and I am generally quite well but get very tired.
Thanks to everyone on this forum for all the support and kindness.
Happy Easter to everyone 🌼🙏
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Hannah2308
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It is hard to say what kind of lump this might be. It sounds like a possible hematoma but it is impossible for us to know that. It could be something totally unrelated. This is something you should have checked out with your care team for a proper assessment. Hemorrhagic events are something your MPN specialist would need to be made aware of. If it is something else, that will be for another doctor to address.
HI, if you have had a "lump" on your neck for 6 weeks it should be checked by a physician, especially at our age and with a known blood disease. The first sign of some other cancers can be an enlarged lymph node in the neck. So if this spot is not going away after 6 wks or it is continuing to enlarge then I would have it checked out. Hopefully it is nothing unusual. Best to you.
Either your primary care physician or your hematologist should be able to advise you.
yes you definitely need to get that checked. I was on Hydroxy for a few months and yes I used to get bruises but not lumps. It’s probably fine but not worth waiting 2 months. It needs checking, hope you get sorted xxx
I’m sorry that you are worried. Perhaps you could telephone the secretary of your haematologist. There is usually a specialist nurse linked to the oncologist/haematologist and ask their advice.
I had bruising and bleeds under the skin but it appears it was caused by the long term use of aspirin. The lump I would be concerned about so one telephone call might ease your mind.
There are options to aspirin (clopidogrel being one), if this is found to be the cause. However, if you take omerprezole for stomach acid you would have to change that too as it is not compatible. Lansoprazole is an option.
Thank you Mardigras, I’m going to get checked soon, hopefully within the next two days. I don’t have a specialist nurse and the doctors in my GP surgery don’t know anything about MPN. I’ll let you know how I get on.
hi there. I am 68 and was diagnosed just over one year ago with ET. Yes, I have had numerous bruises for no reason which disappear eventually. I too am on hydroxycarbimide and aspirin, similar dose to yourself. If your bruise feels like a lump I would get that investigated. My main problem is sore joints and tendons but sure the medication is doing its job. Best of luck and take care🤞😁
Thank you Fairydust. I do appreciate the support from the forum. You are on the same medication as me, which I think is quite a low dose. I had sore joints etc and I use Ibuprofen gel at night and it works well. My platelets are quite steady.
Hi Hannah. I’d mention it to haematologist & it’s ifs really bothering you, phone & see if you can get seen sooner. No point worrying unnecessarily. All the best x
Hi DoubkeF79, thank you for getting in touch. I couldn’t get a GP appointment so I called hospital haematology and they kindly took my details and we’re going to pass onto theConsultant . So hopefully I will hear soon. I’ll let you know how I get on. Thanks again for your care.
Hi Hannah - sorry you are having to worry about this - but same as other people have suggested, you should definitely not wait the two months to get this checked - if nothing else because hopefully it is nothing and you can then minimise any anxiety. I was living in Scotland (Glasgow) when I was first diagnosed with ET 16 years ago (2007) and also for the first 13 years of my treatment. I was treated at the Beatson Centre - and as well as a number of consultants who had good expertise wit ET / MPNs they aalso had some great specialist nurses. I wonder if you could potentially reach out to them for addtional support - not least to help with some extra infor for your GP? Best wishes
Thank you Eileen for your support and information, hope you are keeping well after. having ET for 16 years. I live in Paisley and wasn’t referred to the Beatson. I did go privately to Dr Mark Drummond in Edinburgh and he just said the treatment I was getting in Paisley was what he would have given. There is no specialist nurse or no one to go for any worries. I hope haematology will come back to me with an earlier appointment. I will ask the consultant if I can contact the Beatson to speak to one of their nurses. Thanks again, I will let you know how I get on x
Mark Drummond was the doctor I had who diagnosed my condition. He is very good - just sorry you had to go privately. Sigh.
Asking about contacting the Beatson sounds a good plan - and as Mark Drummond still works there you could also maybe ask him for a good point of contact.
And yes thank you, I am keeping very well after 16 years. And definitely much better than before my diagnosis! After diagnosis it took a while to get my platelets down, my iron up, the right balance of meds etc - but very rarely now do they need adjusting. I am now in North London and am lucky enough to have another good and supportive Consultant and team at the local hospital here. My new local GP did need some extra info when I first signed up - they tried telling me why I had got things wrong, including the name of the condition etc 🙄... but are now also very supportive.
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