Mrs

My name is Tracey Wilkins 54 years old from Nth Queenslad Australia. I had bowel cancer 5 years ago so have been doing everything right blood tests every 6 weeks scans colonoscopys so cant figure out how i got from one end to this. Trying to be positive just swallowed 4 raw garlic peices with water. Someone said it lowers your platelet levels. Oh well all you can do is try. If anyone has any suggestions i would really appreciate it. I have pv and hct

Thanks Tracey

4 Replies

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  • Hi Tracey, I am a former cancer patient also, had all necessary scans for the last three years and so far NED. Then this, I have ET a little different then PV, as it is high platelets and is basically a disease of exclusion meaning the exclude everything else. They tell me I'm Jak2+. I do believe I had too many xrays, CTscans, pet scans etc and the change (as the MPN expert said to me it is a change in your DNA) could have been from too much radiation, but the research is still out on that, so who knows. My mistake was not seeing an MPN expert right away and just going to a regular hematologist which don't get me wrong they are blood doctors but these MPN's are rare and mine is not up on the latest greatest things. Handed me a pamphlet from the Mayo Clinic, said I'm at risk over 60, gave me a script for a Chemo pill and said see you back in a month!

    Now the downside to the MPN's is they are rare so I'm told and I find a lot of disagreement between the experts, treat with just aspirin, chemo, non-chemo, pegasy etc, where does the risk fall, age, thrombosis etc. Some treat just with aspirin, some treat with HU, some don't like HU, some don't use angrylide and some are now using pegasy (peglated interferon) which seems to have a lot of promising results.

    So please see an MPN expert this forum is full of wonderful people and you can asked Maz any and all questions you have. She might be able to direct you to an MPN expert in Australia. Best of Luck.

    Mickey

  • Thanks for that i will try and find one in australia

  • Thank you for that my mind is totally obsessed with this disease. I have been seriously thinking about getting a second opinion so after what you said i will. Im also got an appointment to see the luekamia representative for mt area maybe she can help

    Thanks so much hope your feeling well

  • Hi, Tracey! I am a 49 yo PV patient in the US. Was diagnosed almost 9 years ago. I still have a lot of questions; this forum has been wonderful! I see my Hem/onc in a couple weeks, taking with me a list of questions. I'm sorry to say that I didn't become my own advocate until last year. I took everything my doctors told me as absolute truth. Now I am finding that not all docs agree on treatment. I am Jak2 +, and the PV affects my rbc, wbc, as well as platelets. I take a full-strength aspirin twice a day and am on HU. Right now my wbc is normal, rbc is low, and platelets are high! I've learned to expect the unexpected when I go for my visits.

    Good luck to you, and welcome to our community!

    Becky

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