Hello Desmum and welcome to our forum,

We have a wealth of information on this page on financial support which might be of interest to you. Our coping practically section may also provide some answers to questions you may have. Macmillan also has a very helpful financial support tool and you can find out more about this here.

Our nurses might be able to tell you more about all this or I am sure they would be able to point you in the right direction. They are available on this free number 0808 800 4040 - their line is open Monday to Friday from 9am to 5pm so don't hesitate to give them a call.

As you rightly point out, every cloud has a silver lining and it's good that the JAK2 was discovered because of the blood monitoring as a result of the bowel cancer.

I hope others who have found themselves in a similar situation will pop by and share their own experience with you and their own financial tips and suggestions to what you may be entitled to and how you can dig out more information about all this.

Best wishes,

Lucie, Cancer Chat Moderator

Hello Desmum

Hello, I'm Russell

I've been on hydrox for around thirteen years and cope well with it.

I do have my moments in terms of been shattered, at the moment I'm on 1.5grms per day

plus 75mg of Aspirin which is quite a high dose but hey ho what's the alternative? Anegralide is deffo a no no,heart beat doing an F1 race.

So keep going we'll all be fine

Thanks Russell that's good to hear - I'm 5 yrs in now and am coping well with not many hiccups.- I do get a lot of mouth ulcers but coping with them so far and like you get tired sometimes - but overall I'm pretty healthy and bizarrely don't seem to go down with bugs like I used to (however think being retired helps) - I feel lucky that it was discovered before it could do any lasting damage - I'm on clodopogrel  too as had a TIA which they could find no reason for before they discoverd JAK2 and ET 

Hello everybody,

Is there anybody who has the CALR gene rather than the JAK2? I've been on hydrocarbamide for 10 days, just changed from aspirin to clopidogrel and about to start ferrous sulphate, mild anaemia. I feel ok though am i imagining some numbness in my hands? The  leaflet in the hydro scarily says to see the dr about this but really, is it not a side effect of the drug? 

I so want to be proactive, to control what I can, not what I can't. i've upped my walking and water intake. Is there a specific diet sheet that's just for us?

I see my haematologist next week, the day after a blood test; I will have lots more questions to ask him. This site is wonderful to have. Thank you!

Sue

Hi Sue - have only just joined this chat line, but yes, I have just been diagnosed with the CALR gene version of ET.

I am 67 years old and was always in good health until I had a TIA out if the blue back in January. Subsequent blood tests picked up a high platelet count which eventually led to my diagnosis.
I am due to start on 500gm hydroxycarbamide tablets next week. However, although my consultant tells me that the ET should be asymptomatic, for some weeks I have been suffering heart palpitations (normal heart rate, but it seems to be pounding) and a weird jittery feeling throughout my body.
Just wondered if you have ever experienced anything similar, or if this is another problem completely unrelated to the ET.

Can you advise please??

Lynn x

I have been on 1000gm daily but was taking 1500gm until very recently when it was discovered I am anemic - I havent really had any bad symptoms apart from mouth ulcers which i think is probably caused by the chemo - I think I am more tired than when I started on it 4 yrs or so ago but not easy to prove unless I came off it which of course I can't as the risk of a heart attack or stroke is way too high with a high platelet count - but my bone marrow mutation is Jak2 so not sure if your diagnosis brings different symptoms?  best thing to do is to ask when you go to see your oncologist/haemotologist as they will be able to put you more at ease - to be honest I have carried on with my life as normal and barely think about it now as its been with me for several years and not had a huge impact on my life - well until now of course as corona is a real threat to anyone on chemo - at 68 I try to stay as fit as possible and keep a positive mind - this is the 3rd type of cancer I have had so perhaps why it hasnt fazed me as much this time - but if you are worried do seek advice - you may be anxious about the diagnosis and thats understandable but be reassured most people live with ET with no real problems and like your consultant said many forget they have it as asymptomatic - take care

Jenni

Thank you so much Jenni - your post was very reassuring for me and I am really happy your treatment has been so successful.

My consultant has written to my GP asking her to investigate my symptoms further. Am just hoping that doesn't delay the start of my chemo as my platelet level is currently quite high!

Fingers crossed!

Lynn x

I shouldn't think it would as the risk to your heart is more with raised platelets? I too had an unexplained TIA so for me I'm just glad my JAK2 was discovered as it was more worrying thinking I'd had a blood clot but not knowing why - try to relax- ET isnt that common but many living with it are leading normal lives

Jenni 

Thanks Jenni.

Can I just ask, did you experience any side effects to the medication?