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Essential Thrombocythemia only recently classed as a cancer

28 Apr 2017 17:38

Hi everyone,

I remember a lady saying on here that ET has only recently been classed as a cancer. Can anyone throw any light on this for me please.......  Also if you have ET can you list any side effects of this for me please.

My worst side effect seems to be tiredness and really not wanting to go out anywhere.. My home and my dogs feel like my safe place. Ive recently started some gentle exercises which have enabled me to go out a little but there doesnt seem much information on this condition. Also does everyone have to take oral chemotherapy to bring their platelet levels down. Mine at the moment are around the 400 mark. Thankyou in advance.

Essential Thrombocythemia only recently classed as a cancer

2 May 2017 12:01 in response to Angiemac

Hello AngieMac,

Thank you for posting a question. I am sorry to learn that you have essential thrombocythemia (ET).

ET belongs to a group of conditions called myeloproliferative neoplasms (MPNs). For many years there has been some discussion about whether or not these conditions were cancer. But MPNs are classed by the World Health Organisation as a blood cancers. This is because with these conditions blood cells are produced in an uncontrolled way. MPNs are uncommon.

There is not a ‘one size fits all' answer to your question about the treatment of ET. But not everyone needs to have treatment with chemotherapy.

As you probably know, people with ET have too many platelets in their blood. This causes the blood to be ‘sticky', which increases the risk of blood clots or bleeding problems. People with ET are put into groups depending on whether they are at a low or higher risk of blood clots. Those who are at a lower risk may not need any treatment other than perhaps Aspirin. While those who are at a higher risk may need to have drugs to lower the number of platelets. Different drugs can be used to do this. I am unsure which chemotherapy medication you are having, but probably the most commonly used drug is Hydroxycarbamide  .

You may find it useful to look at the website of MRN Voice and you can view it here.   They have quite detailed information about the treatment of ET and this should answer your questions. You may also be interested in knowing about the support services that they offer, such as the buddy programme.

I hope that the information in the links is useful for you. If you think that it might be helpful do get back to us. If you would like to telephone our freephone number is 0808 800 4040. We are here from Monday to Friday between the hours of 9am of 5pm.

Kind regards,

Jean

 

Essential Thrombocythemia only recently classed as a cancer

16 Nov 2018 13:59 in response to Angiemac

Hello .

My platelets have been rising for four years

 I was diagnosed two years ago. The Consultant told me I had blood cancer. Throbocythaemia. And would need to go on chemotherapy immediately.. My levels are now down to within normal limits. 241.

I do experience tiredness which makes me need to lie on the bed. And sickness. The docs have changed my chemo three times now. This last med I have as an injection every two weeks.

I think I've come to terms with it now. But sometimes get scared.

As your doc to review your chemo in the light of your symptoms..

Meanwhile enjoys the sun and smell the flowers, even thought they are a distant memory this time of year.

God Bless. Looby Loo

Essential Thrombocythemia only recently classed as a cancer

16 Nov 2018 20:50 in response to Looby Loo

Hi Looby Loo,

Thanks for your comments to Angiemac’s post. I too am diagnosed with ET, JAK2+ for about 2 years now... been on Hydroxycarbamide since diagnosis. Had some bumps along the way and spent some time in hospital, I’ve also got portal hypertension with varacies as a result of the ET which have compromised my liver, gall bladder, pancreas and spleen.  I’m also at increased risk of bleeds from the varacies and have been admitted to hospital several times to manage bleeding through OGDs with banding and glue (not nice). I also developed pulmonary embolisms as a result of the bleeds. I’ve had blood transfusions.  Oncology have said that they may move me onto interferon as the Hydroxycarbamide increases the risk of developing leukaemia is greater, so I’m just waiting for that little gem next.... keep your chin up and stay positive...

Essential Thrombocythemia only recently classed as a cancer

2 Dec 2018 11:24 in response to UKBeardo

Hi UKBeardo

Your ET experience has been much, much more drastic than mine - so far anyway, but my mutation is CALR, which may help to explain it.  I gather that CALR is a recent discovery and not as well understood as Jak2.  I seem to have had ET at least 2 years, when a bleeding symptom first attracted attention, and maybe much longer.  It was diagnosed this summer and I'm on hydroxycarbamide too.  I didn't think of trying to contact fellow ETers until the other day and no one's replied to my introductory post so far.  I've seen that most past posts have complained of fatigue but my energy level's quite good.  Crazy itching's the main issue at the moment for me.  I'll be thinking of you in hope that there's no more disasters.

Essential Thrombocythemia only recently classed as a cancer

3 Dec 2018 20:08 in response to Jdog

Hi Jdog,

hope you’re feeling well and the itching isn’t too debilitating... I’d not heard of the CALR mutation until you mentioned it, so did a little googling. It must be releaving that you’ve been correctly diagnosed. The JAK2 ET is quite a rare blood disorder and yours seems particularly so especially as it’s so new too. I’m glad you’re getting the right treatment. I believe my condition started around the time of my 40th birthday, about 8 years ago now. I just started feeling wrong inside... it was difficult to put my finger on it, but after 40 years of reasonably good health, I just felt wrong... GP told me to wait and see if things improved. After a month or so, I still didn’t feel right so they run a bunch of tests at the hospital, without really knowing what they were looking for... by about November 2010 I was losing weight and had terrible pain in my liver... after some more specific tests, including a celiac test as wheat had become a real problem, they discovered I had portal hypertension which had compromised my internal organs. I was put on betablockers to reduce the blood pressure in the vein as the portal vein had become blocked which resulted in damaging the liver etc. Frustratingly no one was really looking at the underlying cause of the portal hypertension... it was just put down as one of those things... looking back, there were some tail tail signs that might have pointed towards ET, but I think they were missed, my platelets counts were elevated but no action was taken... Anyway several years passed on the betablockers and in the September of 2016, a bit like yourself, I had an acute episode of bleeding. After spending a couple of weeks in hospital, they diagnosed me with JAK2 ET and started me on the chemo.

It’s strangly cathartic talking it through and kinda getting it off my chest.

I’m glad that the fatigue hasn’t affected you. You seem to be incredibly positive and I hope you have a good support network.

goodluck with the future Jdog ;o)

Essential Thrombocythemia only recently classed as a cancer

4 Dec 2018 01:15 in response to UKBeardo

Hallo, thanks so much for replying.

It's funny how the thing that gets you is the last thing you ever expected.  I don't suppose you had ever dreamt of portal hypertension, let alone ET, as a factor in life, any more than I ever imagined that my blood would be the thing that went wrong.

There's a lot in your post that i will be thinking about. What strikes me right away is the way you knew something was wrong before the signs were clear to the medics; that's what has happened with me.  First with the itching, which goes back a long way; there was never any explanation but I knew it wasn't right,  It was the same with the bleeding until the right blood test was done.  Now I've had a very peculiar recent experience when so many things were going wrong at once, including a mysterious high blood pressure episode, that the hematologist can only speculate that it was caused by a virus, since it abruptly cleared up.  At the time I felt seriously ill and yet I'm fine again now.  After reading your post and others I've found, I think it's probably a portent.

You are surprised that I'm positive;  I think that's partly down to simple ignorance on my part and the fact that I'm not far down this road of ET;  I haven't gone through anything like what you have and feel quite normal so much of the time.  It's also true that I now have limited demands of life anyway for reasons totally unconnected.  Walking out strongly today with my dogs in wonderful weather -  cold, clear air in the sun, in such a beautiful country - was everything I could possibly expect, and was time truly well-spent.

The internet is an amazing resource, in spite of the downside, e.g  I've now found an ET group with the itch problem too, although unfortunately their stories are not at all reassuring.   I am also wondering if my recent bad spell could have anything to do with portal hypertension.  Luckily I like research so much that it almost makes up for the reasons.

I'm very glad I wrote to you and hope for the best.  Please lets keep in touch. 

                                                              

 

 

Essential Thrombocythemia only recently classed as a cancer

5 Dec 2018 15:31 in response to UKBeardo

Dear Beardo

I can't get over how devastating ET has been for you and how much anxiety you have to live with.

Fingers crossed you'll now get good luck for a change.

Very best wishes from Jdog

Essential Thrombocythemia only recently classed as a cancer

5 Dec 2018 19:58 in response to Jdog

Hi Jdog,

apologies for the delay replying, work has been budy this week. I’d been over west London this week working on the Crossrail project.

after reading your post, I hadn’t really connected it, but I’d suffered with nose bleeds through most of my childhood, which may have been an indicator to the condition during those early days... indeed I may have lived with this condition all my life. I’ve always been tall and slim in my build and never been able to put on weight. Growing up, people would always say “you’ll fill out when you turn 21... 25... 30...” of course, much to their frustration I never did!!!

I was concerned after reading your first reply that a series of events have left you questioning your health expectations.  Please try to stay positive - it’s more important than you might think... You’re clearly well in the system now, with, I assume oncology monitoring your platelets.  Make sure that your haematologist and clinical nurse specialist know about the itching or indeed any other changes to your health while on the chemo. It wouldn’t hurt to mention the portal hypertension next time your at the hospital, I used to enjoy the odd drink after work, but I’ve been off the sauce for over 5 years now due to the liver problems associated with the PH. I miss a nice cold beer or a glass of wine but it’s not the end of the world. 

I’m glad that you have been enjoying the clear fresh weather while out with your dogs, I’m sure you’ll have plenty more enjoyable times to come.

Thanks for your thoughts and concern, it’s much appreciated but I can assure you that I’m feeling fine at the moment and I try not to think too much about the future. I’m a firm believer of what will be, will be.  Just enjoying a cup of hot green tea (small pleasures ehh). Work Christmas lunch on Friday, half day... another small win.

Have a great break over Christmas and enjoy time with loved ones (4 and 2 legged..)

best wishes

UK

 

Essential Thrombocythemia only recently classed as a cancer

12 Jan 2019 11:25 in response to UKBeardo

Hi all

 

i just wanted to add my mother had this condition and it weakens your immune system because of the chemo drugs. Please please be aware of changes to skin and early symptoms of lueukaemia as it was not very well documented that in some cases it can lead to skin cancer and Lukaemia. 

Any existing skin conditions such as scars, eczema should especially be observed for changes.