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.
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.
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.
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.
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.
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.
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!
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
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.