Hi all! I’m a bit new to all this, having been diagnosed with Essential thrombocythemia (ET) CalR a couple of years ago and have been refusing to go onto treatment other than aspirin. My platelet count is around 500-550, which I don’t think is too bad? I really do not want to go onto any chemotherapy drug as I already take MTX for RA. All the side effects that are mentioned are pretty awful, I know you maybe don’t get them all but even so! I do a lot of travelling to the less popular destinations , mostly hot ones. So covering up and staying out of the sun could be a problem, not right now, obviously. I have seen that 32-P can reduce platelets and has virtually no side effects. Just one injection could last a year.
Has anyone had experience of this? Did it work?
Thanks for reading this, hope you are all making the best of the current situation xx
Hi @Quercus, a great big welcome to our forum. I am sorry I cannot help you, but I hope others might be able to share their experiences. If you would like to talk to someone you can contact our Support Services Team on 0808 2080 888 (10am-7pm Monday-Friday, and 10am-1pm Saturday and Sunday) or via email at support@bloodcancer.org.uk
Please keep posting and take lots of care of yourself.
Quercus, I too have thought about unusual treatments for ET. I am not a doctor but if you look up side effects of radioactive phosphorus on Google the you find several are listed as possibilities. If you take a very long lasting dose it will take a long time to stop any adverse effects. I have found very few symptoms with hydroxycarbamide, although after five years it is eating away at my capacity to make red blood cells. P32 could do the same rather more quickly, your haematologist will surely know. Jumbo
Thank you for your reply. Still not sure what to do
Hi @Quercus, perhaps write down all your questions, fears, thoughts and practicalities and go back to your medical team with them. I think it is OK to even question their thinking and let us know when you do make a decision.
thanks Erica, will do.
Hi @Quercus. How are things with you?
Hi Quercus. Did you ever come to a conclusion on radioactive phosphorus? My sister has Essential thrombocythemia (ET) and has tried Hydroxycarbamamide but has experienced the symptoms you feared without any positive effect on her platelet count. I hope you are managing okay anyway and would be interested to hear how you are getting on with or without phosphorus.