Guest guest Posted August 20, 2009 Report Share Posted August 20, 2009 Congratulations, Anita. You did it yourself. You have been so helpful to newcomers, that what goes around comes around. I couldn't be happier for you, even though you have to put up with jerks. Stand tall, shorty. LOL Hands & hearts, Lottie Duthu Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 21, 2009 Report Share Posted December 21, 2009 Remission is overrated even outside of the cml community. I think " undetectible " would be a better terminology. I wince when I hear someone has been pronounced " cancer-free. " Cancer is sly. We need not forget. Sent from my iPhone On Dec 20, 2009, at 10:16 PM, " A " <suzzienovember@...> wrote: So glad to see your increased log reduction Zavie. I saw 's post, but I knew you would see it. You have a way of simply explaining things so everyone can understand the whole process. Hope you can give her some more advice after she gives you some numbers. > > Hi , > > It depends how one defines remission with CML. > > One can define it as being free of CML and not taking any medication. Very > few patients ever reach this level. > > Some will say that you are in remission if you achieve PCRU. But this means > that you must continue taking medication for the CML. If you stop the > medication then it becomes active again. > > Others will say that you are in remission as long as your CML is stable and > it doesn't matter if you are still at 100% CML positive, or at CCR, MMR, or > CMR. And as with PCRU you need to continue taking the drug. > > For myself I considered I was in remission when I reached CCR. Any deeper > response is just a bonus. > > Try and get a copy of all your results. Once you have them you can see how > well you are doing. > > Just look at my signature. My PCR result keeps getting better and better as > long as I am taking Gleevec. > > Decide for yourself what remission means for you. I have seen doctors > increase a patient's dose just to get them into PCRU. Personally I think > that is wrong especially when the top CML specialists believe that as long > as the patient is maintaining a consistent steady response over time. My > definition of remission is achieving CCR and maintaining it for at least 2 > years. > > I hope this helps. > > Zavie > > PS If you reach CCR you get a number in the Zero Club. > > > > > > Zavie (age 71) > 67 Shoreham Avenue > Ottawa, Canada, K2G 3X3 > dxd AUG/99 > INF OCT/99 to FEB/00, CHF > No meds FEB/00 to JAN/01 > Gleevec since MAR/27/01 (400 mg) > CCR SEP/01. #102 in Zero Club > 2.8 log reduction Sep/05 > 3.0 log reduction Jan/06 > 2.9 log reduction Feb/07 > 3.6 log reduction Apr/08 > 3.6 log reduction Sep/08 > 3.7 log reduction Jan/09 > 3.8 log reduction May/09 > 3.8 log reduction Aug/09 > 4.0 log reduction Dec/09 > e-mail: zmiller@... > Tel: 613-726-1117 > Fax: 613-482-4801 > Cell: 613-282-0204 > ID: zaviem > > _____ > > From: [mailto: ] On Behalf Of > wendyphillips54 > Sent: December 20, 2009 4:18 PM > > Subject: [ ] Remission > > > I called my oncologist a couple days ago to check on my blood work I had > done and I asked if I was in remission yet and she (PA) told me that there > is no remission for CML per say! I think I remember reading that we can go > into remission so please let me know what all has to be done to know if I am > in remission or not. My wbc has been normal for a few months now. > Thanks, > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 21, 2009 Report Share Posted December 21, 2009 Most of the top doctors don't use the word remission when it comes to CML. The word " response " is much more accurate. We can have a hematological response or a cytogenic response or a molecular response but the disease is always there at some level hence why the word remission would be deceptive to use. Tracey Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 21, 2009 Report Share Posted December 21, 2009 My Doctor said no active CML cells were detected (she wouldn't say remission)and if I can keep this status, after being on Sprycel for 5 years in (2012) then I can try being off the meds and see if I maintain. Anita ________________________________ From: traceyincanada <traceyincanada@...> Sent: Sun, December 20, 2009 10:00:57 PM Subject: Re: [ ] Remission Most of the top doctors don't use the word remission when it comes to CML. The word " response " is much more accurate. We can have a hematological response or a cytogenic response or a molecular response but the disease is always there at some level hence why the word remission would be deceptive to use. Tracey Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 21, 2009 Report Share Posted December 21, 2009 One of the many annoyances of CML is not being able to give simple answers to the 2 most common questions you get asked: " Are you in remission " and " Are you taking chemotherapy " . Most people asking aren't really ready for the 5 minute lecture needed to answer those! Maybe I should get some leaflets printed? Or a T-Shirt? Phil Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 21, 2009 Report Share Posted December 21, 2009 Hi , That would probably work for them, but it would give me a pain calling it chemotherapy when I knew it wasn't chemo in the accepted sense. If I don't want to give the full lecture I'm careful just to call it 'a drug' > > > > One of the many annoyances of CML is not being able to give simple answers to the 2 most common questions you get asked: " Are you in remission " and " Are you taking chemotherapy " . Most people asking aren't really ready for the 5 minute lecture needed to answer those! > > Maybe I should get some leaflets printed? Or a T-Shirt? > > Phil > __________________________ > > Hi Phil, > Here is a short, simple response that I think adequately answers both questions: > > I take a small dose of chemotherapy daily in pill form that keeps my cancer in check. > > C. > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 21, 2009 Report Share Posted December 21, 2009 > > Hi , > That would probably work for them, but it would give me a pain calling it chemotherapy when I knew it wasn't chemo in the accepted sense. If I don't want to give the full lecture I'm careful just to call it 'a drug' _______________________ Hi Phil, Dr. Druker considers it chemotherapy! Call it the 'magic pill'....a little missle of chemotherapy in a pill. Chemo is not always an IV....there are other drugs that are chemo also. When we have anemia related to Gleevec, Dr. Druker says to call it chemotherapy induced anemia (vs other causes). Before Gleevec, Jerry Mayfield used to say that he had a t-shirt that said..... No future plans. Maybe you need to run a contest to come up with the t-shirt slogan....but then you would probably not be wearing that t-shirt when you needed it. C. Quote Link to comment Share on other sites More sharing options...
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