Guest guest Posted October 5, 2002 Report Share Posted October 5, 2002 Dear Holly, The disease can come and go. Unfortunately if the disease is left untreated or can't be adequately controlled you can have damage including the damage your talking about. I have been trying for some time to get my disease under better control. My latest damage is moderate to severe Disk Degeneration. As you probably know this disease affects us all differently. I will be praying that the Doc's can get your disease in a remission or better yet it goes away again. Let us know what happens. Love, jatw@... Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 20, 2010 Report Share Posted March 20, 2010 hello folks i monitor your advice everyday and have found some really good clues on how to live with CML. my question is what happens when your on gleevec the dose has been doubled and you are no longer in remission. i feel awful. my wbc are 280,000 and my platelets are at about 300,000. i'm tired and feel worthless. please don't suggest interferon, i am deathly allergic to it. it had been tried however my throat swelled shut after the first few minutes of the infusion. any ideas are welcome. thanks so much!!! mel Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 20, 2010 Report Share Posted March 20, 2010 Hi Mel: You said your Gleevec is no longer working. What is your Oncologist doing about switching you to another drug? I can understand your fear of the Interferon, as that is why I am on Gleevec now. The Interferon was causing toxicity to my liver when I first started my CML treatment. I assume you are not just waiting, but searching out further care. Has your Oncologist put you on Hydrea until they can find another treatment for you? When I had to go off the Interferon, I was on Hydrea for 5 months until we could figure out next course of treatment. A. > > hello folks > i monitor your advice everyday and have found some really good clues on how to live with CML. my question is what happens when your on gleevec the dose has been doubled and you are no longer in remission. i feel awful. my wbc are 280,000 and my platelets are at about 300,000. i'm tired and feel worthless. please don't suggest interferon, i am deathly allergic to it. it had been tried however my throat swelled shut after the first few minutes of the infusion. any ideas are welcome. thanks so much!!! > mel > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 21, 2010 Report Share Posted March 21, 2010 Hi Mel, Get yourself on a strong brew of green tea 3 to 4 times a day. Brew from leaves in boiled and slightly cooled water (around 80 - 90 degrees celsius, NOT boiling hot ). It will bring your WBC and platelets count down to a healthy level and then docs can decide what to do next. You need to top up on your iron levels at the same time with some iron supplements, folic acid to help absorb iron and vitamin C otherwise you may end up anemic as too much green tea will stop iron from absorbing in your body. Read my story here: http://onephotographaday.wordpress.com/pregnancy-and-cml/ to find out more. Any questions e-mail me darajek@... All the Best > > hello folks > i monitor your advice everyday and have found some really good clues on how to live with CML. my question is what happens when your on gleevec the dose has been doubled and you are no longer in remission. i feel awful. my wbc are 280,000 and my platelets are at about 300,000. i'm tired and feel worthless. please don't suggest interferon, i am deathly allergic to it. it had been tried however my throat swelled shut after the first few minutes of the infusion. any ideas are welcome. thanks so much!!! > mel > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 3, 2010 Report Share Posted April 3, 2010 hi anna i want to thank you for responding to my posting. i have been using the green tea as you suggested and am willing to try anything else you can think of. my doctor has said (not in so many words) that im screwed and therapy may just not work for me. i recieved massive amounts of radiatiom on a job site and he says that it is more than likely the cause of my cml and if so wont respond to any therapy. well.......i'm not that negative. i will go down fighting. i have to much to live for, wife kids and grand kids. again. thanks so much mel ________________________________ From: d'Araille <darajek@...> Sent: Sun, March 21, 2010 6:58:17 PM Subject: Re: [ ] Re: out of remission  Hi Mel, Get yourself on a strong brew of green tea 3 to 4 times a day. Brew from leaves in boiled and slightly cooled water (around 80 - 90 degrees celsius, NOT boiling hot ). It will bring your WBC and platelets count down to a healthy level and then docs can decide what to do next. You need to top up on your iron levels at the same time with some iron supplements, folic acid to help absorb iron and vitamin C otherwise you may end up anemic as too much green tea will stop iron from absorbing in your body. Read my story here: http://onephotograp haday.wordpress. com/pregnancy- and-cml/ to find out more. Any questions e-mail me darajekgo2 (DOT) pl All the Best > > hello folks > i monitor your advice everyday and have found some really good clues on how to live with CML. my question is what happens when your on gleevec the dose has been doubled and you are no longer in remission. i feel awful. my wbc are 280,000 and my platelets are at about 300,000. i'm tired and feel worthless. please don't suggest interferon, i am deathly allergic to it. it had been tried however my throat swelled shut after the first few minutes of the infusion. any ideas are welcome. thanks so much!!! > mel > > > > > Quote Link to comment Share on other sites More sharing options...
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