Guest guest Posted May 21, 2009 Report Share Posted May 21, 2009 AH HA! LOTTIE, THAT MEANS YOU AND I ARE GOING TO LIVE, AND LIVE AND LIVE ETC. ETC. ETC. On Thu, May 21, 2009 at 11:47 AM, Cogan <ncogan@...> wrote: > > > > > The word remission has a nice ring to it, and the fact that it evades me no > longer bothers me. If I can live 13 years without it, then maybe I didn't > need it in the first place. > _______________________ > > Hi Lottie, my friend, > Time for a little attitude correction. You ARE in a remission of sorts. > Even if you are 100% ph+, if your white cell count is not increasing, you > are in a hematological remission (or response). Your disease is being > controlled by whatever cml drug you are taking....otherwise your white count > would be climbing, which is it now (but did in the beginning when your > disease was not controlled). > > Also, when people first went on Gleevec, I asked Dr. Druker how they would > know that the drug was preventing the progression of the disease (through > the various stages) and he said " we won't really know for 5 years until we > see what the death rate is of people on Gleevec. " At 5 years they expect a > certain (fairly large) % of people with cml to have died but because that is > not happening, they know that the progression of the disease is being halted > by the drug (ie that the drug is working). You are there, my friend! > > The problem with having more cml cells (a higher % that are ph+) is simply > that you have more cml cells that could mutate and be harder to > treat.....but the longer time that goes without this happening (per Dr. > Druker) the less likely that is to happen. So, your cml cells are probably > more stable or reliable than someone who is newly diagnosed (when the nature > of their cml is not known). > > And, here is where a great diet with lots of anti-oxidants is good for > you....mop up those free radicals so that they can't do more DNA damage to > your cml cells. > > So, my opinion is that you can say that your disease is in remission (it is > not progressing, your white count is not climbing) because of your drug. > Even being 100% ph+ as long as stable is a good thing. > > your cml buddy....Maui Nanc > > > -- a Doyle/dob 1929 DX 1995/Hydrea 2/00 - Gleevec Trial, OHSU, Dr. Druker 6/02 - Gleevec/Arsenic Trial, OHSU,Dr. Druker 6/03 - Gleeved/Zarnestra Trial, OHSU, " " " " 7/06 - Sprycel Trial, MDACC, Dr. Talpaz 4/08 - XL228 Trial, U. of Michigan, Dr. Talpaz 4/09 - Ariad Trial, U.of Michigan, Dr. Talpaz Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 21, 2009 Report Share Posted May 21, 2009 Hi , Well said. My pet peeve is all those doctors out there who think that it is important for a patient to achieve PCRU if you have CML. They will increase the dose to get the extra log reduction. You would think that if they were treating patients with CML that they would at least read up on what level of remission is appropriate for patients. You have explained that as long as the CML is kept in check over time (say 2 years) then it really doesn't matter what level of remission you are at. Any numbers that I have seen state that there is no difference in survival rates between a 3 log reduction and PCRU. Zavie Zavie (age 70) 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 e-mail: zmiller@... Tel: 613-726-1117 Fax: 309-296-0807 Cell: 613-282-0204 ID: zaviem YM: zaviemiller Skype: Zavie _____ From: [mailto: ] On Behalf Of Cogan Sent: May 21, 2009 11:47 AM Subject: [ ] for Lottie The word remission has a nice ring to it, and the fact that it evades me no longer bothers me. If I can live 13 years without it, then maybe I didn't need it in the first place. _______________________ Hi Lottie, my friend, Time for a little attitude correction. You ARE in a remission of sorts. Even if you are 100% ph+, if your white cell count is not increasing, you are in a hematological remission (or response). Your disease is being controlled by whatever cml drug you are taking....otherwise your white count would be climbing, which is it now (but did in the beginning when your disease was not controlled). Also, when people first went on Gleevec, I asked Dr. Druker how they would know that the drug was preventing the progression of the disease (through the various stages) and he said " we won't really know for 5 years until we see what the death rate is of people on Gleevec. " At 5 years they expect a certain (fairly large) % of people with cml to have died but because that is not happening, they know that the progression of the disease is being halted by the drug (ie that the drug is working). You are there, my friend! The problem with having more cml cells (a higher % that are ph+) is simply that you have more cml cells that could mutate and be harder to treat.....but the longer time that goes without this happening (per Dr. Druker) the less likely that is to happen. So, your cml cells are probably more stable or reliable than someone who is newly diagnosed (when the nature of their cml is not known). And, here is where a great diet with lots of anti-oxidants is good for you....mop up those free radicals so that they can't do more DNA damage to your cml cells. So, my opinion is that you can say that your disease is in remission (it is not progressing, your white count is not climbing) because of your drug. Even being 100% ph+ as long as stable is a good thing. your cml buddy....Maui Nanc Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 5, 2009 Report Share Posted October 5, 2009 Hi , when I had the procedure done, the tall handsome doctor walked in, put in the needle, walked out and two nurses finished the job, I never saw him again. You are most likely quite right, it was drawn in a very short amount of time. B obby a (Bobby) Doyle Brecksville, Ohio, USA DX 05/1995 Interferon/9 weeks/hydroxyurea/5 years 02/2000 - Gleevec Trial/OHSU 06/2002 - Gleevec/Trisenox Trial/OHSU 06/2003 - Gleevec/Zarnestra Trial/OHSU 04/2004 - Sprycel Trial/MDACC, CCR in 10 months #840 - Zavie's Zero Club 09/2006 - out of CCR 04/29/08 - XL228 trial/U of Michigan 01/09/ - PCR 5.69 02/13/09 - XL228 trial ended due to side effects o4/13/09 - Ariad Trial U of Michigan 09/09/09 - PCR 0.017 04/13/09 - Ariad trial at U. of Michigan 09/09/09 - PCR 0.017 04/13/09 - Ariad trial, U. of Michigan 09/08/09 - PCR 0.017 From: hey00nanc <ncogan@...> Subject: [ ] for Lottie Date: Monday, October 5, 2009, 2:30 PM My pulmonologist is already talking about draining my lungs, but I want him to confer with MDACC first, as he is not aware that the SKI could be the culprit. I remember Bobby talking about how painful the procedsuyre was. ____________ _________ _ Hi Lottie, I had this procedure years ago in my onc's office.....sat on the table, leaned forward against a support and he numbed between the ribs, made a cut and stuck the needle in and took off about 800mg of fluid. Like a bmb, I think it depends on the experience of the person doing the procedure... ..mine was not bad at all. Even Bobby wrote that the procedure itself did not hurt. Bobby, I think that maybe they drew off the fluid too quickly for you, ?? creating a vacuum and that caused all the pain (just like doing a bmb aspiration too quickly hurts, but it is briefer). Another point is that if the drug is causing the pleural effusion, then drawing the fluid off will not resolve the problem and it usually comes right back. Also, going off drug may help get rid of it....but if it is a large amount then they might want to get rid of it faster. I recently had a small PE on Sprycel and OHSU said that most people don't bother to have it removed. Glad you are back on the list. You are always so welcoming to our new cml friends. C. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 6, 2009 Report Share Posted October 6, 2009 > > Hi , when I had the procedure done, the tall handsome doctor walked in, put in the needle, walked out and two nurses finished the job, I never saw him again. You are most likely quite right, it was drawn in a very short amount of time. B obby ___________________ Hi Bobby, You were probably annoyed that the good looking doc did not stick around! tee hee My doctor did the entire procedure, and he wanted to see my face (to monitor my reaction) while he did it. There is one risk...it is possible to puncture the lung. I asked him what happens it that happens....and he said 'you go to the hospital'. I really had no pain during or after the procedure....but I am sure it varies for people. C. Quote Link to comment Share on other sites More sharing options...
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