Hello I’m Kiki64: I was diagnosed with ET in... - Leukaemia CARE

Leukaemia CARE

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Hello I’m Kiki64

Kiki64
Kiki64

I was diagnosed with ET in 2019. Two weeks ago the haematologist told me that I have a masked PV . I have had two venesections and have my last one Monday, before I see the haematologist in two weeks. My PCV has reduced so has the symptoms that went along with it, burning hands and feet. I’m still getting numbness in my toes. I’m very anxious about the diagnosis , has anyone else experienced all of this

10 Replies

Hi there,It's not unusual for the two diagnoses to go together and PV can often be managed very well by venesection and I'm glad that it has reduced your symptoms significantly already.

Both ET ad PV are part of a spectrum of myeloproliferative disorders and LC has some very good information about these. The link is here:

leukaemiacare.org.uk/suppor...

I hope this helps

Jackie

BluMts
BluMts in reply to Jm954

Jackie, it's great you have the ability to understand the abbreviations this poster used. I and many members will not. Do wish that posters spelt out medical terms unless they were very very very common abbreviations. I'm now just skimming past posts that dont

Jm954
Jm954 in reply to BluMts

Apologies, ET is essential thrombocythaemia which affects platelets and PV is polycythyaemia vera which affects red cells. Most patients only have one condition but, it's not unusual for several to arise in the same patient as they are part of a group of myeloproliferative diseases (MPDs). In both cases, too many of each is produced which causes a wide range of clinical symptoms which in extreme cases, if it's not picked up and managed, can be life threatening.Jackie

Kiki64
Kiki64 in reply to Jm954

Hi jm954,

Thank you for replying to my post. I have my last venesection tomorrow morning then see my haematologist a week later.Thanks for the link to leukaemia care .

2003UK
2003UKChampion

Hi and a great big welcome and I cannot help medically but what I can relate to is your feelings of anxiety, the not knowing is always the worst. I often find no matter what our diagnosis is that we seem to share similar thoughts, feelings and practicalities. That is what I find supportive and if you would like to talk to someone the Leukaemia Care Charity helpline is open Monday - Friday 8.30am until 5.30 pm and they have a special evening service on a Thursday and Friday 7pm - 10pm. The number is freephone 08088 010 444. Take care, stay safe and let us know how you get on.

Kiki64
Kiki64 in reply to 2003UK

Hi 2003uk ,

Thank you for replying to my post . And thank you for the big welcome . I will bear in mind about Leukaemia care , it’s very good to know. Take care

Kiki64

Sorry can't understand your abbreviations. You'll get better responses if you spell out words. Best wishes.

Kiki64
Kiki64 in reply to BluMts

Apologies to you BluMts.

BluMts
BluMts in reply to Kiki64

Thanks, no apology needed Kiki. It was only a hint that you'd be understood best if spell out things, as some readers will not understand abbreviations of conditions they may not have.

Kiki64
Kiki64 in reply to BluMts

Ok Blumts .

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