Essential Thrombocythaemia

[cassie1010]

Hi my husband has just been told he has ET.When is put on the Chemo tablet and blood thiners is it likely he can return to being a bricklayer. many thanks

[Aime]

Hi Cassie, the best person to answer that question is his haematologist but, as far as I’m aware most people who have ET or PV can lead relatively normal lives. As long as their condition is monitored and treated as necessary, I believe a normal life span is also expected.

If you go onto the MPN Voice website you will be able to find trustworthy information about ET plus I’m sure you will get replies from other folks on the forum very soon.

Kindest regards Aime xx😺😺

[cassie1010 in reply to Aime]

Thank you so much Aime very helpful x

[katiewalsh]

Hi Cassie, I agree that your husbands doctor must answer that question. I have a history of blood clots so even though I’m on blood thinners, chemo & my ET is controlled, I need to avoid activities that could lead to hard impact on my body. Actually, I’m not even allowed to have a deep tissue massage. I was told these things can cause internal bleeding & clots. I’ve read that the two major causes of death for those with ET is internal hemorrhaging and blood clots. It doesn’t sound like your husband has had blood clots so his doctors advice may be different. Hope all goes well for you both!! Katie

[cassie1010 in reply to katiewalsh]

Thank you Katie thats great advice xx

[dgk70]

Hi Cassie

I was diagnosed with ET 2 years ago I am on 2 x 500mg of hydroxycarbamide and aspirin daily , I’m a plasterer and it hasn’t stopped me working, the only thing is i really suffer from fatigue, but try to work through it , tell ur husband to make sure he wears a sun hat and sun cream as we’re prone to skin cancer being on the chemo, make sure he drinks plenty of water, good luck 👍

[cassie1010 in reply to dgk70]

Thank you dgk70 for the kind advice xx

[Lori_jones in reply to dgk70]

My husband was diagnosed with ET in 2003 after a clot on the brain and silnutanous bleeding in his kidneys. Was treated at Mayo Clinic for 12 yrs then suddenly psssed away from skin cancer caused by the drug hydroxyurea. Keep your husband out of any sun

A death sentence on that drug. My life has been misery since his death

[Wyebird]

Hi Cassie, we all react differently to the drugs. Some people manage to work as normal. I know that once my platelets dropped( I’m Calr ET) I felt much better. Although fatigue remains an issue. It maybe that he might have to reduce his hours a little.

I do wish him well.

[cassie1010 in reply to Wyebird]

Thank you Wyebird most helpful very kind x

[ccsial]

We all react differently. As for me I lived with ET for about 14 years, age 60-74, taking 2 500mg hydra daily. I lived a perfectly normal life with lots of energy. I now have MF, on Jakafi, and still feeling pretty good.

[cassie1010]

Thank you Ccsial thats very encouraging x

[Hidden]

Hi Cassie

I have just turned 67 and only take 100mg aspirin daily. I work almost full time as a nurse and are pretty active, which I like to continue. It seems I am on of the lucky ones because I don't suffer from Fatigue and never have. I have had ET since 2015. CALR. My platelets at present are 701. I have six monthly bloods and now visit my Haem 18monthly. I did visit him yearly which I like but he didn't think it was now necessary.

Good luck with your research.

Lyn

[Doggy1903]

Hello, yes I too was diagnosed with ET last year. I too understand we can continue with a normal pattern of living and do not think there is any restriction to working life.

The hospital care has been excellent with regular checks and very helpful information.

Hope all goes well for your husband.

Exercise seems very good for us.

[Lori_jones in reply to Doggy1903]

Stay out of the sun

It’s a death sentence