Guest guest Posted February 27, 2006 Report Share Posted February 27, 2006 Hi , The majority of us are PCR positive so that's not something to worry about. What you want to know, is what kind of log reduction you've achived and what is the trend over time. Ideally, you want to achive a three log reduction from your baseline value which is a 1000 fold decrease (or three decimal spots to the left of your original PCR). If you didn't have a PCR on diagnosis then your lab should have a general number that they attribute to average newly diagnosed patients. Some people waffle back and forth between positive and negative on their PCR's, as long as the change is less than 1 log, then it's usually not significant. The bottom line is that you want to track your PCR trend to see if it's going up, going down or remaining stable. This will take a few tests at the same lab to do. Take care, Tracey --- In , " Finsand " <chrisfinsand2@...> wrote: > > Hello everyone! it's been a while but I have been reading and learning from all of you. Thanks for all your insights and sharing. I was wondering if anyone else is having scalp pain. It seems that the longer my hair gets, the more scalp pain and sensitivity I have. Some days it hurts to have even the slightest touch to my head. > > Also, I have been ccr neg since last June (2005) and was pcr neg as of last nov (2005). I started gleevec (400) dec 3rd 2003 immediately upon diagnosis of cml. this past month I had another pcr and it is now no longer neg. How serious is that. the numbers weren't high, but it wasn't zero. My doc will do another pcr on Wed and then we'll see where to go from there. > > any thoughts on any/all of this?? > > chris in minn > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 28, 2006 Report Share Posted February 28, 2006 PCR'S do jump a little. I have been in the same situation for a couple of years now. Dr. Mauro tells me not to worry. You can always e mail him your results and he wil give you his opinion. As for the sensitivity, I notice it on many parts of my skin. It is only uncomfortable when I put some pressure on my skin, so I just ignore it. I just contribute most of my aches and pains to age or posssible Gleevec. I can't help getting older, and Gleevec gets me there. Just to let others know, please do not " ignore " a cold with coughing, especially if you run a temp. I had taken 2 rounds of antibiotics, and then ran a fever. When I finally got to the doctor 24 hours later, he was upset that I had waited so long. He stuck me in the hospital for IV antibiotics and breathing treatments. Finsand <chrisfinsand2@...> wrote: Hello everyone! it's been a while but I have been reading and learning from all of you. Thanks for all your insights and sharing. I was wondering if anyone else is having scalp pain. It seems that the longer my hair gets, the more scalp pain and sensitivity I have. Some days it hurts to have even the slightest touch to my head. Also, I have been ccr neg since last June (2005) and was pcr neg as of last nov (2005). I started gleevec (400) dec 3rd 2003 immediately upon diagnosis of cml. this past month I had another pcr and it is now no longer neg. How serious is that. the numbers weren't high, but it wasn't zero. My doc will do another pcr on Wed and then we'll see where to go from there. any thoughts on any/all of this?? chris in minn Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 28, 2006 Report Share Posted February 28, 2006 Am not sure what is causing your scalp pain, But I know friends that have had very sensitive scalps that were Dx with Shingles of the head or head & eye. In 2002 I did have a Gleevec face rash which worked its way down the neck then to my back. There will be other opinions I am sure. Halff Finsand <chrisfinsand2@...> wrote: Hello everyone! it's been a while but I have been reading and learning from all of you. Thanks for all your insights and sharing. I was wondering if anyone else is having scalp pain. It seems that the longer my hair gets, the more scalp pain and sensitivity I have. Some days it hurts to have even the slightest touch to my head. Also, I have been ccr neg since last June (2005) and was pcr neg as of last nov (2005). I started gleevec (400) dec 3rd 2003 immediately upon diagnosis of cml. this past month I had another pcr and it is now no longer neg. How serious is that. the numbers weren't high, but it wasn't zero. My doc will do another pcr on Wed and then we'll see where to go from there. any thoughts on any/all of this?? chris in minn Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 2, 2006 Report Share Posted March 2, 2006 thanks halff. I'll keep an eye on it. chris Re: [ ] sensitive scalp pain Am not sure what is causing your scalp pain, But I know friends that have had very sensitive scalps that were Dx with Shingles of the head or head & eye. In 2002 I did have a Gleevec face rash which worked its way down the neck then to my back. There will be other opinions I am sure. Halff Finsand <chrisfinsand2@...> wrote: Hello everyone! it's been a while but I have been reading and learning from all of you. Thanks for all your insights and sharing. I was wondering if anyone else is having scalp pain. It seems that the longer my hair gets, the more scalp pain and sensitivity I have. Some days it hurts to have even the slightest touch to my head. Also, I have been ccr neg since last June (2005) and was pcr neg as of last nov (2005). I started gleevec (400) dec 3rd 2003 immediately upon diagnosis of cml. this past month I had another pcr and it is now no longer neg. How serious is that. the numbers weren't high, but it wasn't zero. My doc will do another pcr on Wed and then we'll see where to go from there. any thoughts on any/all of this?? chris in minn Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 2, 2006 Report Share Posted March 2, 2006 Thanks shelley. chris Re: [ ] sensitive scalp pain PCR'S do jump a little. I have been in the same situation for a couple of years now. Dr. Mauro tells me not to worry. You can always e mail him your results and he wil give you his opinion. As for the sensitivity, I notice it on many parts of my skin. It is only uncomfortable when I put some pressure on my skin, so I just ignore it. I just contribute most of my aches and pains to age or posssible Gleevec. I can't help getting older, and Gleevec gets me there. Just to let others know, please do not " ignore " a cold with coughing, especially if you run a temp. I had taken 2 rounds of antibiotics, and then ran a fever. When I finally got to the doctor 24 hours later, he was upset that I had waited so long. He stuck me in the hospital for IV antibiotics and breathing treatments. Finsand <chrisfinsand2@...> wrote: Hello everyone! it's been a while but I have been reading and learning from all of you. Thanks for all your insights and sharing. I was wondering if anyone else is having scalp pain. It seems that the longer my hair gets, the more scalp pain and sensitivity I have. Some days it hurts to have even the slightest touch to my head. Also, I have been ccr neg since last June (2005) and was pcr neg as of last nov (2005). I started gleevec (400) dec 3rd 2003 immediately upon diagnosis of cml. this past month I had another pcr and it is now no longer neg. How serious is that. the numbers weren't high, but it wasn't zero. My doc will do another pcr on Wed and then we'll see where to go from there. any thoughts on any/all of this?? chris in minn Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 2, 2006 Report Share Posted March 2, 2006 That makes a lot of sense, Tracey. thanks, chris [ ] Re: sensitive scalp pain Hi , The majority of us are PCR positive so that's not something to worry about. What you want to know, is what kind of log reduction you've achived and what is the trend over time. Ideally, you want to achive a three log reduction from your baseline value which is a 1000 fold decrease (or three decimal spots to the left of your original PCR). If you didn't have a PCR on diagnosis then your lab should have a general number that they attribute to average newly diagnosed patients. Some people waffle back and forth between positive and negative on their PCR's, as long as the change is less than 1 log, then it's usually not significant. The bottom line is that you want to track your PCR trend to see if it's going up, going down or remaining stable. This will take a few tests at the same lab to do. Take care, Tracey > > Hello everyone! it's been a while but I have been reading and learning from all of you. Thanks for all your insights and sharing. I was wondering if anyone else is having scalp pain. It seems that the longer my hair gets, the more scalp pain and sensitivity I have. Some days it hurts to have even the slightest touch to my head. > > Also, I have been ccr neg since last June (2005) and was pcr neg as of last nov (2005). I started gleevec (400) dec 3rd 2003 immediately upon diagnosis of cml. this past month I had another pcr and it is now no longer neg. How serious is that. the numbers weren't high, but it wasn't zero. My doc will do another pcr on Wed and then we'll see where to go from there. > > any thoughts on any/all of this?? > > chris in minn > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 2, 2006 Report Share Posted March 2, 2006 Hi : I get the sensitive scalp pain every once in awhile. It cycles like all the other Gleevec side effects. Is your hair thinning out at all? I usually notice it when mine is starting to thin. I use Nioxin products and that has helped. I even talked to a dermatologist because it was driving me crazy. She gave me something called Cormax to help with the pain. It is a prescription drug. A friend of mine who went through chemo for breast cancer said that her scalp hurt when her hair was falling out. That is why I associate it with my hair thinning. K > Hello everyone! it's been a while but I have been reading and learning from all of you. Thanks for all your insights and sharing. I was wondering if anyone else is having scalp pain. It seems that the longer my hair gets, the more scalp pain and sensitivity I have. Some days it hurts to have even the slightest touch to my head. > > Also, I have been ccr neg since last June (2005) and was pcr neg as of last nov (2005). I started gleevec (400) dec 3rd 2003 immediately upon diagnosis of cml. this past month I had another pcr and it is now no longer neg. How serious is that. the numbers weren't high, but it wasn't zero. My doc will do another pcr on Wed and then we'll see where to go from there. > > any thoughts on any/all of this?? > > chris in minn > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 3, 2006 Report Share Posted March 3, 2006 Hi , thanks so much for telling me this. Truthfully, I have wondered if I'm just going nuts. I too have a friend with breast cancer who said the same about scalp pain when her hair fell out. I was also struck by your mention of the cyclic aspect of Gleevec side effects. That is something I was wondering if others have noticed as well. I certainly do. My hair texture has really changed quite a lot and I am now a true salt and pepper gray -- used to have black, black hair. I have cut my hair very short and that seems to have helped with the pain. I'll ask about the cormax, though. thanks again, chris [ ] Re: sensitive scalp pain Hi : I get the sensitive scalp pain every once in awhile. It cycles like all the other Gleevec side effects. Is your hair thinning out at all? I usually notice it when mine is starting to thin. I use Nioxin products and that has helped. I even talked to a dermatologist because it was driving me crazy. She gave me something called Cormax to help with the pain. It is a prescription drug. A friend of mine who went through chemo for breast cancer said that her scalp hurt when her hair was falling out. That is why I associate it with my hair thinning. K > Hello everyone! it's been a while but I have been reading and learning from all of you. Thanks for all your insights and sharing. I was wondering if anyone else is having scalp pain. It seems that the longer my hair gets, the more scalp pain and sensitivity I have. Some days it hurts to have even the slightest touch to my head. > > Also, I have been ccr neg since last June (2005) and was pcr neg as of last nov (2005). I started gleevec (400) dec 3rd 2003 immediately upon diagnosis of cml. this past month I had another pcr and it is now no longer neg. How serious is that. the numbers weren't high, but it wasn't zero. My doc will do another pcr on Wed and then we'll see where to go from there. > > any thoughts on any/all of this?? > > chris in minn > > > Quote Link to comment Share on other sites More sharing options...
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