Platelets on health program radio 4 yesterday

[Melaniem59]

Did anyone hear the health program on radio 4 yesterday about high platelets. It is now being used as a test by GPs as there is a high percentage if platelets are raised of having a cancer, more than a lump in the breast. It is s better indicator that you will go on to have a cancer of some sort.

Does that mean us as well?

I have been diagnosed with ET for 1 year now, just wondering if we already have the cancer or would there be another one?

Hope this doesn't upset anyone, just wanted to share & get some more info if possible

Thankyou

Melanie

[mhos61]

Hi Melaniem59, I didn't hear the radio 4 discussion, would liked to have though.

I think in regards to the cancer question (only my opinion) this would relate to secondary thrombocythemia only. Would be interesting to hear more opinions though.

Mary x

[Inca]

I missed it ,the wifi signal disappeared ( not unusual in our area,rural S W Fr.) !!! So annoying when there is an interesting programme,wondered if anyone else heard it..My platelets are below norm,today have gone up for first time,not yet normal criteria....seems odd that platelets are are cancer warning....so much we do not know.I am P V 7yrs,Hydrea etc,,wonder if we will hear more.Best all,keep well.

[Coradelphine]

Hi there. I only joined the forum yesterday but have already felt the benefit

I was diagnosed with et 13 yrs ago. My haematologist told me if I took the tablets I would be ok and my life expectancy would be as anyone else. If I didn't take the tablets I would have a stroke - needless to say I take the tablets!!! He also told me that this is not a cancer.

I have now been diagnosed with myelofibrosis which is a cancer and does considerably reduce life expectancy.

Ask your haematologist about anagrelide this brought my platelets down and keeps them stable.

Hope this helps xx

[sjdard in reply to Coradelphine]

Hi, I have just started taking Anagrelide, did you get any side effect, struggling big time with headaches.

[jillydabrat in reply to Coradelphine]

Cannot believe your Haematologist said ET was not a cancer. Another case of a consultant/doctor not knowing what it is. It was classified as a cancer by the World Health Organisation in 2011. I find it so annoying that your Haemotologist was not fully informed about a blood disorder. Hope you keep keep fit and well Cora xx

[Coradelphine in reply to jillydabrat]

I've had it since 2003 perhaps it never occurred to him to tell me when it was reclassified!!!!!

Anyway he's retired and I now have 2 haematologists who I see in turn. They have told me just what I have and referred me to the specialist nurse who told me from the needle to the thread!

Thanks for your reply x

[martcar]

Does anyone have a link to the programme so we can catch up on i-player?

[Melaniem59 in reply to martcar]

I just looked it up its called inside health & that program is available on iplayer, was Tuesday 5th. it's also about aspirin so quite good

I've tried to add a photo but can't

[martcar]

Thanks very much - will check it out.

[tessa46]

Hi Melanie, thanks for this. I thought I had replied already on my phone, but it doesn't seem to have been posted. Just to say that I agree with Mary. My understanding is that if you have had a positive test for one of the gene mutations (JAK2, CALR etc), then what you have is essential thrombocythaemia, but if the gene test is negative, it is worth investigating further to find out the cause, as it might be secondary thrombocythaemia. i was diagnosed with ET following a minor stroke in 2015, but this diagnosis only came after other extensive investigations because it was thought likely the raised platelets could be due to a tumour somewhere. Eventually I tested positive for the JAK2 gene mutation, so they decided it was ET. My sister died from pancreatic cancer and while she was ill, her platelet level was raised and she was put on anticlotting medication. Perhaps someone on this site who is better medically qualified than me would be able to tell us whether all cancers present with a raised platelet level?

[catwoman2015]

Hi all , you can listen to bbc radio 4 on ipad etc catch up ,programe was on wed 5 th at 15 30 , Dr mark porter . its worth a listen , i heard it yesterday after Melanie posted info ,so thank you for this Melanie . all the best Holly

[Mazcd Partner MPNVoice]

Hi Melanie, Prof Harrison has said: We exclude cancer in diagnosing ET… They can be reassured.

Best wishes, Maz