Together we will beat cancer

Donate

Essential thrombocythemia

30 Jan 2017 14:03

Not sure if I'm posting in the right forum but have been taking oral chemotherapy for over 3 years now - thinking it was to reduce my high platelets to avoid  Strokes etc. Have only just found out that this is a type of blood cancer... I see my haematologist every 3 months for a check up - cancer was never mentioned, my own gp thinks it's possible that I couldn't have taken it in when I was told overv3 years ago. There have been 4 different haematologists at the hospital in the time I've been there. I'm seeing her in 2 weeks, hopefully she can explain more to me. All I know is I'm very frightened - can anyone help me please. Thankyou so much.

Essential thrombocythemia

31 Jan 2017 21:56 in response to Angiemac

My haematology Nurse told me today that it is only recently that ET has been classed as cancer. My own doctor called it a benign cancer. Cancer is just a word - the treatment is the same whatever the name and the reduction of platelets is still the aim.

Yes, it is scary, but it is no more scary now than it was this time last year and I imagine you are still receiving the same treatment. If it makes you happier to talk about it as having your over production of blood platelets controled then continue to think of it that way. As I said - cancer is just a word.

Essential thrombocythemia

11 Mar 2017 12:48 in response to Angiemac
Thankyou ChrisAnnSen, Very interested to hear that ET has only recently been classed as cancer.... how long ago would this be. I found out this week that my platelets have been high for 9 years... What you've said makes total sense, yes im having the same treatment. I think hearing cancer frightened the life out of me.... after going through similar with bowels when I was 32.... Im so fatigued with this, if I could walk my retrievers without having to stop to sit down every 10 minutes then I would feel so much better. Thanks for your reply and ive probably posted in the wrong place again as on a new laptop.

Essential thrombocythemia

28 Apr 2017 11:46 in response to Angiemac

Hi Angiemac, I have the same but with only 5 others in this country with the same kind. I take oral chemo as well to control platelets also take asprin to prevent a clot.Tiredness can get to you along with bruising. I try to be positive but it is difficult sometimes as no-one locally has any idea what I'm talking about so its great to find this forum. Wishing you all the best. 

Essential thrombocythemia

28 Apr 2017 17:24 in response to Sandiel

Hi Sandiel

Thankyou for your reply... I was just wondering where you live if you only have 5 others in your country with the same.... I thought it was something that a lot of people suffered from.

My doctor has just sent me to have light excercise to try to build up my energy levels which were non existent before I started. Im now able to go for short walks without getting out of breath.... Im also taking a blood thinner along with the chemo.  I wish you well, its a horrid thing to have but since my exercising things are feeling a little better. Thankyou for replying.

Essential thrombocythemia

28 Apr 2017 19:53 in response to Angiemac
Have you found the forum here? https://healthunlocked.com/ Although it is a UK site it has people from all over the world on it. And there is an excellent associated site called MPN Voice here: http://www.mpnvoice.org.uk/ which has lots of helpful information and stories of people who are experiencing the same as us. I am fortunate in that I don't really suffer from exhaustion but there are many people on that site who do and who can suggest ways of coping. I think ET has been classified as a Cancer for about 10 years but my memory may be faulty. It does mean though, in the UK, sufferers are able to get their prescription free of charge - assuming they aren't already doing so.

Essential thrombocythemia

2 May 2017 09:12 in response to Angiemac

Hi Angiemac

Really pleased for you on the energy levels with fingures crossed it continues.

 I take chemo and asprin with a gastro-resistant capsule due to Hiatus Hernia. 

I live i England but the strain I have is rare...caused by the way my bones are structured. Been having blood injections to try to raise Haemoglobin levels. Get the results tomorrow. I'm trying to learn to ride a bike again after 50yrs in the hope this will increase my energy levels. 

I keep getting told that I look so well when I feel like death but thats the nature of the thing. So nice to chat with peole who understand what its about. 

Take care

Essential thrombocythemia

4 May 2017 17:26 in response to Sandiel
That's the trouble with an illness that's almost invisible.. My main side effect is exhaustion and if im out shopping and have to sit down, if someone I know stops to say hello the first thing is "oh you look so well", if only they knew. How were your results? I hope you are getting on ok with the bike too.... As I said previously, im on a GP referral for exercise, the bike is one of the things, along with the treadmill. I find the bike easier as im sitting down. I try so hard but its difficult as its in a gym with fantastically fit people around me all the time. They have a line of treadmills, around 6 I think, I always try to get on the end one as above it there is a TV screen, not that I can hear much as there is so much noise in the room. I hate being in the middle as having people either side of me tends to put me off, theres me walking quite slowly when all of a sudden the people either side of me are running! Years ago (about 50) I could have competed with them all. That's the hard part. I know I shouldn't be worrying about other people and the gym instructor tells me that all the time but I cant help it. Ive been out walking with my 2 Golden retrievers too, not far but its good to be out in the fresh air. I hope the blood injections have raised your haemoglobin levels. Let me know how you are getting on.... keep going with the bike, just managing to get yourself on one will boost you... Lovely to meet you on here You take care too.

Essential thrombocythemia

22 May 2017 09:15 in response to Angiemac

How is it going for you. I understand how it is when you can't seem to keep up so feel for you. 

The blood injections didn't do the trick, in fact Haemoglobin is even lower (around 70 I'm told) so I have had a another bone marrow biopsy (not nice). Get the results last day of the month.Think they are testing for Myelofibrosis.

Still going with the bike but I do fall off and run out of breath but have had lots of encouragement. Also do a lot of walking with my boyfriend which helps. 

Hope the gym work is getting easier for you. This thing is not nice and so difficult to explain to others. Really lovely to have you to chat with on here. 

Essential thrombocythemia

22 May 2017 13:12 in response to Sandiel
I can't say this from personal experience but I have read lots of people saying how much better they feel after exercise even though they were completely exhausted when they start to do it. I don't know but imagine it is because exercise makes the heart work harder which in turn pumps the blood round the body faster thereby 'feeding' the muscles. (I'm not a medical person, as you may realise!).

Essential thrombocythemia

17 Oct 2018 00:34 in response to Angiemac

Hello  Just seen your comment and want to reassure you.  I have had Essential T for 18 years.and am now nearly 81.  I expect to live for another 10 to 15 years as my mother died at 91 and my maternal grandmother died at 97.

I did have a bit of a rocky start in 2000 as one drug I was given affected my heart, but that has now recovered, providing obviously that I continue to take pills to help it along.  I still go to Keep Fit and enjoy my grandchildren and expect to see some greatgrandchildren, before I fall off my perch.  Keep smiling - cheers!

Essential thrombocythemia

25 Oct 2018 18:07 in response to MaureenV

Like wise I got diagnosed 7 years with relatively normal lifestyle as long as I continue oral treatment. I am proactive with my consultant team and MPN support really helps explain pros and cons regarding treatments lifestyle changes and future clinical studies, trials. On relatively young at 40 and know side affects from anagrelide may impact over next decade but remaining positive and enjoying family life helps immensely 

Essential thrombocythemia

29 Jan 2019 11:27 in response to NM9309

Hi I am 42 ET 700plt still on aspirinHappy

Essential thrombocythemia

11 Mar 2019 21:27 in response to Angiemac

I was diagnosed with essential thrombocythemia in 2004, I take 500mg of hydroxycarbomide each day, along with aspirin and a gastro-resistant medication. I  see my haematolgist every 3 months, for a blood test and a check-up. My blood count is stable and controlled. I was just told that my body (bone marrow) overproduced platelets, a rare condition. This is the fist time I have found this forum, so nice to find other people with this condition. Your posts explain the tiredness I feel sometimes.

Essential thrombocythemia

13 Mar 2019 19:51 in response to Roma

I know it's hard to explain to people how you feel. I also found this forum recently.it has helped reading people journeys.