Mines been almost 6 weeks now an not back the waiting is awful
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Hi Chris1
I had same experience as you re delayed results for Polycythaemia vera (PV) Jak 2.
Blood samples were taken on 5July 21 when I was admitted through A&E with clot in my lung. Was told results would be back in 4-5 weeks. It was the following October when I got the results & what a shock when I discovered I had Blood cancer. Probably just as well I wasnāt told what the actual test was for. Dr only mentioned that this extra test was because I had a clot at back of my leg almost 9 months prior to the lung clot, so having presented twice with clots, they decided to check if Polycythaemia vera (PV) was the cause. I can well imagine how you felt, but better to know than not to know in order to tackle the issue with treatment for it.
Good luck all the way, there is lots of help out there & this Forum is excellent for guidance.
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Yes, I agree with you @PVMags that this forum is a helpful place to be. It was my go to place when I was first diagnosed, as my haematologist was not very forthcoming with information and still isnāt. It is good to compare with other sufferers, as it gives me an idea of not only what to expect in the future, but also how I am doing in the great scheme of things. Saw my haematologist last week and my platelets have gone up by 59 to 659. The last two times they had gone down a bit so it seemed hopeful, but now with them going up again my hope of remaining on just aspirin has been dashed. The next drug he will try is Anagrelide which I am worried about trying, as I react badly to several drugs including the hydroxycarbamide which he had to take me off after trying it for two weeks last year. It took me nearly five months to recover from that. It has been a hard journey so far, but without this forum it would be even harder and isolating. I hope you are doing well and not getting any more clots. Itās good to have a diagnosis, even if it does come as a shock, as at least it makes sense of all the random symptoms that have been happening over a period of time.
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Hi again Small lymphocytic lymphoma (SLL) mi bloods are normal it came back today but my gp say hes asking hemotologist wot the next step is so dies that nean rgas still sumat qrong
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Hi @Maria123 great news that your bloods are normal.
Perhaps ask your GP why he is asking the haematologist about the next step.
Please do let us know how you get on.
Really look after yourself
Hi again i rang hemology and my jak2 an carl are neg but still waiting for mpl or mtl i cant remember an advised my gp to maje a routine appointment not sure uf my mpl can be pisitive tho
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Thanks @Maria123 for the update, please do keep updating us how you get on.
Look after yourself
Hello, sorry to bother you. I am being tested for polycythaemia Vera. I was wondering if anyone knew where my bloods are sent to test for JAK2? My bloods were taken at University hospital Coventry and Warwickshire. Do they have a lab in house or sent to another hospital/lab? Sorry again for the questions. Just very anxious waiting. The waiting and not knowing is horrible.
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Hello Chrispy, what is the 'patient knows best website?
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Hello @Walton1979
Welcome to the Forum.
Thank you for posting your questions on here. I hope you are doing okay. Sorry to read that waiting for your results is worrying.
JAK2 and other tests are usually done at the West Midlands Regional Genetics Laboratory in Edgbaston. On their website it says they are the largest genomics facility in the UK.
Do contact your haematology team at Coventry if you have been waiting more than 4 weeks to ask if they have received the results, and they can contact the Laboratory for you. Hopefully it wonāt been too long to wait for you.
Keep us posted on how you are. Take care, Heidi.
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Hi @Walton1979 I am so glad that you have found us.
You have had a far better response from @Heidi_BloodCancerUK than I could have given you.
As you say the waiting and not knowiing are horrible feelings.
Please let us know how you get on and I look forward to hearing more about you.
Look after yourself
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Hello Heidi, thank you so much for taking the time to reply and advise. It means a lot. Thank you
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Hey there folks, so sorry to hear about these delays with JAK2 and other test results.
I wonder if I could jump on and ask @Heidi_BloodCancerUK if JAK2 tests are also usually so slow when done at University Hospital Wales (Heath Hospital Cardiff)? Since my own diagnosis with Polycythaemia vera (PV) my dad was testedā¦ and has heard nothing for months. He nags his GP and gets fobbed off. Thankfully heās had no symptoms, but then neither did I. Could he contact the lab directly or is it better for his GP to do the follow-up?
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Hello @Duncan
Youāve asked a great question, thanks for posting.
The genetics testing for Haematology patients in South Wales is done at the All Wales Genomics Laboratory within the University of Wales Hospital in Cardiff.
I found out that the genetics testing āturn around timeā for JAK2 and other tests for Myeloproliferative neoplasms (MPN) is 21 days.
I would suggest your Father call his GP surgery again if the blood tests were sent more than 6 weeks ago. Explain that youāve been waiting for X-amount of weeks and are anxious to know the results, if they arenāt able to help then do ask to speak to the Practice Manager and see if they can contact the Lab on your Fatherās behalf.
I hope this is helpful.
Keep us posted, take care, Heidi.
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This is such excellent advice, thank you so much @Heidi_BloodCancerUK. Iāve passed on your suggestions to my dad. I think he may need to take it straight to the practice manager as heās been nagging his GP for months now. Itās incredible to me how dismissive of such a potentially serious test result theyāve been, especially considering 2 of his children have already been diagnosed with MPNs! Letās hope this helps chivvy them into action.
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Thatās good to know. I had my test done 10 weeks ago. Was worried that they had lost it
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Hi @tighfiodh61 welcome to our forum.
Perhaps it is reasonable to pleasantly just ask if your test results are back after 10 weeks.
The Blood Cancer UK support line is there if you would like to talk to someone on 0808 2080 888
Please do let us know how you get on, I always think waiting and not knowing is horrible.
Be very kind to yourself
Thank you. Did ask the Doctor. Sheās going to give it another 2 weeks. Staffing problems in the hospital apparently 
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