Essential thrombocythemia (ET)

Hi Leesa222 and welcome to this corner of the Community. I don’t have ET but was diagnosed way back in 1999 with a rather rare type of Lymphoma so understand in part the challenges of getting a clear diagnosis.

Some blood cancers especially the rare ones can be hard to get all the parts of the  jigsaw together to get the truth, but haematologists are the blood experts so let’s look for a clear answer soon.

Thanks Mike. His next appointment is mid November. Hopefully this will give us some answers.

He is having 'mini 3 gene panel' tests is that means anything to anyone! I've googled and not sure what this means.

Hi, 

My son just got diagnosed with ET and a genetic abnormality called CALR which occurs in about 20-25% of ET patients apparently have. He only found out due to the Blood Transfusion Service phoning him to tell him he had an unusually high platelet count and to get checked out. His only symptom is tiredness but as he’s been overworking for years that’s nothing new. 

He’s been told that although rare, it is manageable often with aspirin. 

It takes this family’s cancer count to a total 4/4. 

Hugs xxx

Hi Rob ET Rob so sorry to hear that you have ET. I am a fellow MDS sufferer and I know exactly where you are coming from regards tiredness. I see my good friend  has replied to you. He was one of the first to reply to me when I joined the community.

MDS has a number of named illnesses under its banner heading. I don't have ET, I had never heard of it before your post and to tell you the truth like probably millions of people who sees those initials, I thought of a little bug-eyed creature and I was curious. 

I have Refractory Anaemia which means I have a very low red cell count for which I have a weekly injection to encourage my bone marrow to produce more healthy red blood cells. I've had more than 300 so far, and counting. I heard the other day from someone who like you is, rather was, fearful of injections and has had so many now that they have overcome that fear. I hope the same happens to you, Rob.

As red cells carry oxygen around the body and I have a distinct lack of them, I am also frequently.  exhausted but, in a terrible, cruel, twist of fate, 4 months after my cancer diagnosis I was diagnosed with a spinal condition, spinal stenosis. Within 6 months of that, I became a wheelchair user. I had to pack in my job of 35 years and I had to seek out counselling for a few months because it felt like my world had collapsed. Consequently I am unable to do many jobs around the house which troubles me greatly and sometimes I feel more than useless. Tiredness and apathy probably because of high morphine intake and other medications for painkilling have been present in my life for much of the period post diagnosis. However, changing the kind of household tasks I tackle makes me feel more at ease. I know that I can't get back to the way I used to be, it has taken the better part of six years to realise that.

Rob, I hope that you soon get back that enthusiasm and also overcome your needle phobia. Take care and stay safe.

Tvman

Hello to you all, just joined the group today , it's nice to hear from people with the same symptoms as me ( not that I wish it on anybody) was beginning to think I was slowly but surely loosing my marbles, my GP was adamant it was the menapause, luckily for me a locum doctor came and referred me to haematology where I was diagnosed with ET, I have been on hydroxycarbamide now for almost a year, my platelets are slowly decreasing, was just wondering if I'm ever going to feel any better, and will the pain become more bareable. 

Son had a video call with his consultant today, his platelet levels are beginning to lower, not low or high enough for any treatment right now so he’s been advised on lifestyle (the only thing he will need to do is reduce the G&T intake a bit, otherwise he’s fine) and will be monitored every 6 weeks with blood tests and video consultations. So it’s ‘active monitoring’ or Watch and Wait…..

They think the blood transfusions donations  might just have aired this and that’s why the platelets shot up? Who knows? 

The only symptom he’s had was once a ‘silent’ migraine like visual disturbance and he’s normally tired but works long hours. 

He’s been told to avoid Ibuprofen.

Hugs xxx

Hope all goes well, I also have the visual disturbances, but luckily have my husband to drive me around as I don't feel safe behind the wheel now and my legs don't seem to be mine anymore,will have telephone consultation in 4 weeks after more blood tests fingers cross my count will have gone down. Take care

Hi everyone. My Dad was diagnosed with ET during the first lockdown. He had to go to all the appointments by himself, and was given his diagnoses alone, which was heartbreaking. I have lung sarcoma, so we both have had to be extra careful during the pandemic, and he has become very withdrawn.

He is taking Hydroxycarbamide which has reduced his platelets to an acceptable level, but he is so tired to the point of exhaustion. He is talking of stopping the Hydroxycarbamide because he says, he didn’t feel unwell before he started taking it! I have told him to speak to his Oncologist about changing medication, but he seems to think they wouldn’t be open to that because if costs. 

I am wondering if anyone else has managed to change from Hydroxycarbamide to interferon or how you cope with such severe fatigue. 

I've been on hydroxycarbamide for almost a year , I know how he feels the fatigue is terrible and I constantly feel unwell. However I was tired all the time before I started the medication so am not sure if the medication has made me worse, certainly not any better. I haven't been able to change my medication. But am optimistic that when my platelets reduce to an acceptable level I will feel better. The only thing I can suggest is to have a lay down now and then. Please tell him not to stop his medication. It's very hard to live life as before and I am beginning to accept that I can't really make any plans and have to take one day at a time. Hopefully he'll feel better soon, sorry couldn't give you any helpful answers. Take care.

Hi Chellesimo - I've had ET now for about 7 years - I was on Hydroxycarbamide until 14 months ago - I changed over to interferon as I was getting too many mouth ulcers - all went well (although interferon didn't lower plateletts as much as chemo tablets) until my interferon injection clashed with the Pfizer vaccination - last summer I became very ill - no energy- couldn't eat - joints swollen and worst of all my hair started falling out - it seems my immune system was boosted too much and it turned in on me- I rang my oncologist and asked to come off interferon and I'm now back on chemo - the dose is smaller than I was on before and my platelets aren't as low as they'd like but not dangerously high and no more hair loss (which is a common side effect of interferon)  so I'm prepared to live with that compromise - my doc also discovered that my illness had accelerated my heart beat to over 100 so she put me on beta blockers - the change in me was amazing I'm now almost back to normal (well normal for an ET patient lol)  she will review me in 2 months time to see if I can slowly come off the beta blockers - it's worth trying interferon if Hydroxycarbamide is causing problems - I hope his extreme tiredness gets better soon as it's an awful thing to live with