Guest guest Posted February 8, 2007 Report Share Posted February 8, 2007 A dear friend of mine had radiation chemo and BMT. After 7.5 years it returned. She takes gleevac and is in remission again. That's why I joined this group for any new infomation. Good luck, Dyana Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 9, 2007 Report Share Posted February 9, 2007 Hi Efrem, There really isn't such a thing in CML as " remission " . The doctors like to refer to it as a " response " . The first level of response is a " haematological response " . This is when your blood counts return to normal. Most people will achieve this in a month but it's not unusual to see it take up to 3 months. The second level of response is a " cytogenetic response " . This is when the number of Philadelphia chromosomes is reduced. If the number of ph+ cells is above 35% but below 95% it is considered a cytogenetic response. If the number of ph+ cells is between 5% and 35% then it is considered a major cytogenetic response (MCR). If the number of ph+ cells is 0% it is considered a complete cytogenetic response (CCR). CCR usually happens within 6 months but some have seen it as early as 3 months and others have taken a year or more. The ultimate goal in CML is to achieve a " 3 log reduction " which is a 1000 fold decrease in cancer cells. This is measured using a PCR test and can take a year or more to achieve. Some patients do even better than this but with a 3 log reduction, the chances of relapse are infinitesimal so this is the milestone you want to reach. Anything more than this is just gravy. Current information indicates that we'll have to remain on Gleevec for the rest of our lives. Those who have stopped taking it, have almost all relapsed and some even became resistant when trying to restart it. Take care, Tracey --- In , " efrem_fischer " <efrem_fischer@...> wrote: > > Has anyone here, with CML, gone into remission? > If so, how long did it take, from the time you started the Gleevec? > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 9, 2007 Report Share Posted February 9, 2007 Tracey well explained especially for the newbies. I personally reached Hematologic response by the end of 1 month(600mg), cytogenic within 5 months and I FINALLY just recently reached my 3 log reduction.(800mg last 3 months), 19 months after diagnosis. 19 months was when I had the biopsy and the PCR which showed the 3 log reduction. Everyone is definately differant. I feel blessed to get the news of the 3 log as I was beginning to wonder if I would ever get there. Hopw that helps- Jen CML 5/13/05 34, married mother of 3 (11,8,6) Gleevec 800mg S. RN [ ] CML Remission ? Has anyone here, with CML, gone into remission? If so, how long did it take, from the time you started the Gleevec? ________________________________________________________________________ Check out the new AOL. Most comprehensive set of free safety and security tools, free access to millions of high-quality videos from across the web, free AOL Mail and more. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 9, 2007 Report Share Posted February 9, 2007 Efram: Someone else has probably already answered your question by now, but as I understand it, you really do not go into remission, as most cancer patients understand it. You can go into Hematological Remission, when your white count returns to normal levels and you can go into Cytogenic Remission, when your cytogenics come back clean. And while your PCR may come back clean, my medical team has stated that it does not mean that the cancer has left your body. More likely it is just suppressed and still lurking out there somewhere and if you go off medication, it will return at some future point. In fact, I took a three week break in December and my WBC doubled in that short amount of time. So while technically, we do not really achieve " remission " , by taking Gleevec or Sprycel or other medications, we actually can control our infirmity and live long healthy lives. We just have to watch out and be ever vigilant to insure we are continuing to respond to medication. My wife loves to tell people that I am in remission and if it makes her feel better about things, then she can go right ahead. We all deal with it in different ways. But that is not that different from Breast Cancer survivors or other forms of cancer. They too have to always be aware, in case their type of cancer can come back. Just know that there are many people out there that will give you support on this journey. Do not be afraid to ask for help. You will be amazed at the people who will be willing to help you in your own community. Seek them out and don't be a ashamed to take what people are offering. They genuinely want to help you on this journey. With warm regards, Matt ville, FL DX January of 2005 Gleevec Since May 2005 Father of 3 In a message dated 2/8/2007 5:17:08 P.M. Eastern Standard Time, efrem_fischer@... writes: Has anyone here, with CML, gone into remission? If so, how long did it take, from the time you started the Gleevec? Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 9, 2007 Report Share Posted February 9, 2007 Hi , It's not at all unusual to take 18 months or even longer to achieve the famous " 3 log reduction " . Some have taken 2 and 3 years to get there and some still aren't there after 4 and 5 years. The difference in relapse rates between the 3 log reduction people and the plain old CCR people are negligible anyway. Of course, having said that, we all want to get to the safest zone possible. Tracey > > Tracey well explained especially for the newbies. > I personally reached Hematologic response by the end of 1 month (600mg), cytogenic within 5 months and I FINALLY just recently reached my 3 log reduction.(800mg last 3 months), 19 months after diagnosis. 19 months was when I had the biopsy and the PCR which showed the 3 log reduction. > Everyone is definately differant. I feel blessed to get the news of the 3 log as I was beginning to wonder if I would ever get there. > Hopw that helps- > Jen > > CML 5/13/05 > 34, married mother of 3 (11,8,6) > Gleevec 800mg > > > > > > > S. RN > > > [ ] CML Remission ? > > > Has anyone here, with CML, gone into remission? > If so, how long did it take, from the time you started the Gleevec? > > > > ______________________________________________________________________ __ > Check out the new AOL. Most comprehensive set of free safety and security tools, free access to millions of high-quality videos from across the web, free AOL Mail and more. > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 9, 2007 Report Share Posted February 9, 2007 Thank you for this great summary and explanation. Tracey <traceyincanada@...> wrote: Hi Efrem, There really isn't such a thing in CML as " remission " . The doctors like to refer to it as a " response " . The first level of response is a " haematological response " . This is when your blood counts return to normal. Most people will achieve this in a month but it's not unusual to see it take up to 3 months. The second level of response is a " cytogenetic response " . This is when the number of Philadelphia chromosomes is reduced. If the number of ph+ cells is above 35% but below 95% it is considered a cytogenetic response. If the number of ph+ cells is between 5% and 35% then it is considered a major cytogenetic response (MCR). If the number of ph+ cells is 0% it is considered a complete cytogenetic response (CCR). CCR usually happens within 6 months but some have seen it as early as 3 months and others have taken a year or more. The ultimate goal in CML is to achieve a " 3 log reduction " which is a 1000 fold decrease in cancer cells. This is measured using a PCR test and can take a year or more to achieve. Some patients do even better than this but with a 3 log reduction, the chances of relapse are infinitesimal so this is the milestone you want to reach. Anything more than this is just gravy. Current information indicates that we'll have to remain on Gleevec for the rest of our lives. Those who have stopped taking it, have almost all relapsed and some even became resistant when trying to restart it. Take care, Tracey --- In , " efrem_fischer " <efrem_fischer@...> wrote: > > Has anyone here, with CML, gone into remission? > If so, how long did it take, from the time you started the Gleevec? > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 10, 2007 Report Share Posted February 10, 2007 -- As always, thanks so much for your explanation on the 3-log reduction, CCR, etc. My husband goes in next Friday for testing (the first we have done), to see just where he sits in all of this. He has been on Gleevec for 7 months (has had CML for 8 months, but had to take a 1-month Gleevec break due to severe neutropenia fo which he was hospitalized for 1 month). We are very hopeful and pray we get good news, but all in all--since he was diagnosed with a 449,000 WBC and it currently sits at 3700 (all platelets, red blood cell count, everything else all within normal range)....I know that means he is showing a haematological response, but that doesnt necessarily imply that he also is achieving cytogenic or major cytogenic response? We know weekly what his numbers are because he still does weekly blood work, but soon will go to bi-weekly, then monthly. His onc wants to stay on top of this since his numbers plummeted last Oct., within 2 days which put him in the hosp--he had developed an infection, too. His onc has a couple CML patients and we really trust her, although she is not considered a " CML specialist " , but often she is in contact with a CML expert out of City of Hope Cancer Center in Los Angeles. Thanks again, you are always so helpful and put things in such clean english, it is much appreciated! Regards, >From: " Tracey " <traceyincanada@...> >Reply- > >Subject: [ ] Re: CML Remission ? >Date: Fri, 09 Feb 2007 00:58:56 -0000 > >Hi Efrem, > >There really isn't such a thing in CML as " remission " . The doctors >like to refer to it as a " response " . > >The first level of response is a " haematological response " . This is >when your blood counts return to normal. Most people will achieve >this in a month but it's not unusual to see it take up to 3 months. > >The second level of response is a " cytogenetic response " . This is >when the number of Philadelphia chromosomes is reduced. If the >number of ph+ cells is above 35% but below 95% it is considered a >cytogenetic response. If the number of ph+ cells is between 5% and >35% then it is considered a major cytogenetic response (MCR). If the >number of ph+ cells is 0% it is considered a complete cytogenetic >response (CCR). CCR usually happens within 6 months but some have >seen it as early as 3 months and others have taken a year or more. > >The ultimate goal in CML is to achieve a " 3 log reduction " which is a >1000 fold decrease in cancer cells. This is measured using a PCR >test and can take a year or more to achieve. Some patients do even >better than this but with a 3 log reduction, the chances of relapse >are infinitesimal so this is the milestone you want to reach. >Anything more than this is just gravy. > >Current information indicates that we'll have to remain on Gleevec >for the rest of our lives. Those who have stopped taking it, have >almost all relapsed and some even became resistant when trying to >restart it. > >Take care, >Tracey > > > >--- In , " efrem_fischer " <efrem_fischer@...> >wrote: > > > > Has anyone here, with CML, gone into remission? > > If so, how long did it take, from the time you started the Gleevec? > > > > _________________________________________________________________ Check out all that glitters with the MSN Entertainment Guide to the Academy Awards® http://movies.msn.com/movies/oscars2007/?icid=ncoscartagline2 Quote Link to comment Share on other sites More sharing options...
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