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Just been diagnosed
6 Answers
After 12 months of tests I have been diagnosed with essential thrombocythaemia and it is recommended I take hydroxycarbamide for the rest of my life.
I think I understand what this condition is but all the leaflets I have been given mention cancer and the drug seems to be a form of chemotherapy.
Does anyone have any personal experience of this condition and the drugs? What can I expect? Is it anything to worry about really?
I think I understand what this condition is but all the leaflets I have been given mention cancer and the drug seems to be a form of chemotherapy.
Does anyone have any personal experience of this condition and the drugs? What can I expect? Is it anything to worry about really?
Answers
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Chemotherapy drugs aren't just used for chemotherapy though, they have various uses in different doses. Drugs for rhumatoid arthritis are the same as some used for chemotherapy but in a much lower dose.
When I first read up about some of the drugs for arthritis I had a similar reaction until I read into it more thoroughly.
I think (only from what I've read quickly) it's usually a suppressant thing, stopping disease progression or maybe, in your condition, overproduction of cells (?) causing the problem - like in inflammatory arthritis as it's caused by an overreacting immune system it dampens the response.
Any strong drugs can have their problems but it's matter of balance, potential side effects v. beneficial effect on the condition.
I'm sure sqad will be along with a far more informed view.
When I first read up about some of the drugs for arthritis I had a similar reaction until I read into it more thoroughly.
I think (only from what I've read quickly) it's usually a suppressant thing, stopping disease progression or maybe, in your condition, overproduction of cells (?) causing the problem - like in inflammatory arthritis as it's caused by an overreacting immune system it dampens the response.
Any strong drugs can have their problems but it's matter of balance, potential side effects v. beneficial effect on the condition.
I'm sure sqad will be along with a far more informed view.
It is cancer drug but the first thing my consultant said to me in avery reassuring way is you don't have cancer. I have been taking the medication for me than 5 years without the slightest problem. After the initial period of getting the platelet count under control i was on a six monthly appointment except for the oe time my platlet count rose i was a more frequent rota, a soon as my count steadied off i was back on my normal rota. The only side effects i have had are i bruise more easily and red spots on my body.I was a postman until my retirement this month and did my walk as easily as before i was diagnosed the same as you.My advice to you is treat it for what it is an illness that is easily treated with simple medication once a day or as prescribed. I hope this helps and wish you well for the future and A HAPPY NEW YEAR to you and yours and to anyone else looking in.
Essential thrombocythaemia is a myeloproliferative disorder, as you can probably read in your leaflets; you are producing too many platelets.
Any such overproduction of cells can loosely be described as a type of cancer, although that is not a particularly helpful label in this condition which is only slowly progressive and relatively benign.
The hydroxycarbamide will keep everything in control, and you very likely will be attending the Haematology Department for many years/decades to have your blood tested, so I shouldn't worry too much.
You might find this link useful.
http://www.mpdvoice.org.uk/
Any such overproduction of cells can loosely be described as a type of cancer, although that is not a particularly helpful label in this condition which is only slowly progressive and relatively benign.
The hydroxycarbamide will keep everything in control, and you very likely will be attending the Haematology Department for many years/decades to have your blood tested, so I shouldn't worry too much.
You might find this link useful.
http://www.mpdvoice.org.uk/
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