I had a very large unprovoked DVT in my groin which spanned the length of my leg, that was over 7 months ago, Im still getting daily pains in my hip/groin/leg, along with tiredness, just doing some daily driving which has never bothered me before exhausts me and hurts my leg along with almost anything I do just tires me out. I also get more pains in my left arm and just generally feel weaker on that side, my left arm/leg gets tingly and goes dead alot quicker. Its kind of a running joke in my family that Im always tired.
Im under the Haematology team and recently had a CT theres no obvious cause for the pains im still getting, they are doing some tests for Myeloproliferative neoplasms ('MPN'), Jak2 mutation, CALR and Essential thrombocythemia ('ET'). I havenāt told my family about these tests as I donāt want them to worry as we lost my dad 3 years ago to Multiple Myeloma which progressed into Leukemia.
I feel like my life is kind of on hold at the minute aswell, Iām trying to muddle through but its the waiting that sets off the anxiety, I try to tell my self that no news is good news, but then every blood test Iāve had my platelets are still rising, they are currently sitting around mid 500s and they seem to be the only āabnormalā result currently.
Has anyone else experienced this, or have any suggestions.
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Hello @AnxiousAnnie
Welcome to the forum, and thank you for taking time to send in your post.
It must be a very stressful and worrying time for you and my heart goes out to you. I hope the test results come back okay, and do feel free to let us know how you get on.
Waiting for tests results is not a nice time, all sorts go through our minds, all the what ifs etc.
I can relate to your circumstance a little, I am a Chronic lymphocytic leukaemia ('CLL') patient on active monitoring and my next blood test is Monday the 9th of March, so I too will be in that waiting period until I hear back, so please do not feel that you are alone, we are always hear to engage with you.
Always remember, if you prefer, you can always speak confidentially with our support services team for information and support on 0808 2080 888
Please take good care
Kind regards
Mike
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Hello @AnxiousAnnie and welcome to the forum.
It sounds like youāre having a really difficult time.
The waiting for test results is really hard and Iām sure everyone on the forum will agree.
Itās good that you are under the care of Haematology. I personally think from my own experience that they do an amazing job.
I was diagnosed with an Myeloproliferative neoplasms ('MPN') Myelofibrosis in October 2023.
There are others on the forum with Myeloproliferative neoplasms ('MPN') diagnosis so once you have test results youāre bound to find people who can share experiences
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Hello @AnxiousAnnie
Iām sure you are feeling very anxious right now.
I was diagnosed 2 years ago with Essential thrombocythemia ('Essential thrombocythemia ('ET')') jak2 and was told itās a good one to have 
Fingers crossed for a good result for you. Hopefully youāll hear very soon.
Please keep us updated
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Thank you everyone for taking the time to respond, I hope you are all keeping well.
I had a GP phone call today in which unfortunately he said he doesnāt have the results. They do not go direct to the GP and will need the Haematology consultant to read and send them over first.
I have a Haematology appointment in April so until then its just a waiting game.
Iām tempted to ring them and see if they have the results and to check if a further scan has been booked.
I was hoping the results would just go straight onto my NHS App but no such luck.
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Hello there @AnxiousAnnie, welcome to the forum. Iām really sorry to read of that DVT and its aftermath, that must have been terrifying! Apologies for not greeting you already but I see youāve had some lovely helpful support. Having survived a heart attack caused by a blood clot I can empathise with how worrying this has been, but I am so glad you found us here.
I think that sense of being on hold is spot-on and very understandable as all the testing and awaiting results can feel like such a weird place to be stuck. In 2023 I went through lots of similar testing and was diagnosed with Polycythaemia vera ('PV') which you may know is a closely related type of Myeloproliferative neoplasms ('MPN') to Essential thrombocythemia ('ET') as they tend to have similar symptoms and treatments. It sounds like your doctors are checking thoroughly, and so my advice would be to find some healthy distractions while youāre in this in-between place.
I would share the great Blood Cancer UK information about Essential thrombocythemia ('ET') and other Myeloproliferative neoplasms ('MPN') but please hold out hope that you are free of Myeloproliferative neoplasms ('MPN'). From my non-medical point of view, Iād say it might be helpful to bear in mind that there are all sorts of blood disorders and other conditions that can cause similarly raised platelets and other blood cells, including infections. Thereās even a condition called erythrocytosis or sometimes, confusingly, polycythaemia (not Polycythaemia vera ('PV')) which can share similar symptoms with Myeloproliferative neoplasms ('MPN') but is not blood cancer. So, please hold out hope that your overall diagnosis is not necessarily Essential thrombocythemia ('ET').
Personally, I would be tempted to contact your haematology folks sooner than April, especially as they have shared that theyāre testing for Essential thrombocythemia ('ET'). You could point out that the waiting is very concerning and you would appreciate knowing more, sooner. You could also explain that losing your dad to blood cancer means you are holding a lot of worry about your own eventual diagnosis.
I see @GenesisDevice has shared the 0808 2080 888 number for the lovely Blood Cancer UK nurses and I would urge you to call them for any medical queries or support as they really know their stuff.
Do please let us know how the testing and appointments go @AnxiousAnnie, and try not to let that anxiety take overāif I may be so bold, Iād say youāre channelling it well into finding answers and your self-care. Iāll keep an eye out for how you get on.
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Wouldnāt do any harm to ask Haematology if have results @AnxiousAnnie as its still a few weeks until April.
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Thank you for your kind response.
Iām trying to keep positive and I try to be rational about these things and seek appropriate answers without going straight to ādoomā but then I am also a massive overthinker and cant help sometimes spiralling or making links to my dad.
I think when you go through something like a blood clot or a heart attack you suddenly become very aware of your body, and all the aches and pains that youve never really noticed before come to the forefront. I think I will take your advice though and try to reach out a bit sooner just for my own peace of mind.
Thanks again and I wish you all the best with your health journey.
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Aw youāre very welcome @AnxiousAnnie, your worries really are understood here. I know what you mean about overthinking, and would say if you have tricks and techniques to keep it from being overwhelming then now is a good time to be really kind to yourself. What could be more anxiety-provoking than a cancer scare?!
Something my haematologist has told me, which may be of interest, is that Myeloproliferative neoplasms ('MPN') are usually not hereditary and thus are unlikely to be passed on. When there are clusters of blood cancers within a family or localised area I was told itās more likely to be due to an environmental carcinogen causing the gene mutations (the ācancerā). I have a close family member with another blood cancer to me and sadly we were probably both exposed to the same carcinogens which triggered our gene mutations, likely in childhood.
You are so right about how a blood clot can make us aware of our bodies in new ways. For a long time after my heart attack I could feel the left side of my body more, somehow, like it was more sensitive after its blood flow was affected. I try to use this somatic wisdom to alert me of how my body is getting on. Perhaps your sensitivity will also help you keep alert of any new symptoms that may emergeāsometimes I think being sensitive to how our bodies feel can help nip issues in the bud before they can grow too big.
Iād be interested to know how it goes reaching out to your haematologist if youād like to share @AnxiousAnnie, but please know the forum is here for you whenever you need it.
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