Guest guest Posted June 12, 2008 Report Share Posted June 12, 2008 Thanks Tracey, I am panicking a little, but better now!!! Eva ( I go back next Wednesday to check my counts .) From: Tracey Sent: Wednesday, June 11, 2008 6:23 PM Subject: [ ] Neutropenia-Eva Hi Eva, Don't panic, this is very common in the early months of Gleevec treatment. Your neutrophils aren't really that low, many members have had lower than that. Ideally they want your count to be 1 or above so you see, you're just barely below that. Many of the top CML doctors will let the counts drop below the 1 without doing anything because they've found that it's not such a big deal afterall. It's a bigger problem when your count gets around 0.5. In the early days of treatment, the Gleevec is killing off many leukemic cells (which are mostly neutrophils) and it takes some time to generate a new population of good healthy cells so that's why your count is low. Give it some time and your count should bounce back up nicely. For a few patients who have problems with chronically low counts, there's a drug called Neupogen which can grow neutrophils so there are other options besides Sprycel if you happen to have an ongoing problem with low neutrophils but you're not even close to crossing that bridge yet so please try not to worry. Take care, Tracey > > Hi gang; I just got home from the doctors and my Gleevec is working too well or something. My wbc is 2.8 . The doctor says my Neutrophils are too low 0.9. She said this leaves me vulnerable to infection so just when I was settling in quite nicely I have to go off Gleevec for a week and if my counts don't improve I may have to switch to Sprycel. I know nothing about Sprycel and now I am very nervous about what will happen next. Anyone that has experienced the same thing , could you please help me understand what this is all about. My doc just kept on saying , I think it will be ok, or it should come back up!! Thanks Eva B > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 13, 2008 Report Share Posted June 13, 2008 Eva- Is your doc a CML specialist? I agree with Tracey- I dropped to 1- my doc wouldn't move me to 400 mg up from the 3 I started with until I reached 5. I told him 400 was the therapeutic dosage and that was where I wanted to be- so I chanted 5 everday and put a sign up at work " 5 " . I didn't even get a cold - I went to 5 and he increased to 400mg.. But everyone is different. Non- cml docs may not understand how our little gold works. We are not your average bears. Hang in there and I am sure soon Zavie will be assigning you your own number. I think I'm 1137 but then with Chemo brain---who knows-smile. Chi --- Tracey <traceyincanada@...> wrote: > Hi Eva, > > Don't panic, this is very common in the early months > of Gleevec > treatment. Your neutrophils aren't really that low, > many members > have had lower than that. > > Ideally they want your count to be 1 or above so you > see, you're just > barely below that. Many of the top CML doctors will > let the counts > drop below the 1 without doing anything because > they've found that > it's not such a big deal afterall. It's a bigger > problem when your > count gets around 0.5. > > In the early days of treatment, the Gleevec is > killing off many > leukemic cells (which are mostly neutrophils) and it > takes some time > to generate a new population of good healthy cells > so that's why your > count is low. Give it some time and your count > should bounce back up > nicely. > > For a few patients who have problems with > chronically low counts, > there's a drug called Neupogen which can grow > neutrophils so there > are other options besides Sprycel if you happen to > have an ongoing > problem with low neutrophils but you're not even > close to crossing > that bridge yet so please try not to worry. > > Take care, > Tracey > > > > > > Hi gang; I just got home from the doctors and my > Gleevec is working > too well or something. My wbc is 2.8 . The doctor > says my Neutrophils > are too low 0.9. She said this leaves me > vulnerable to infection so > just when I was settling in quite nicely I have to > go off Gleevec for > a week and if my counts don't improve I may have to > switch to > Sprycel. I know nothing about Sprycel and now I am > very nervous about > what will happen next. Anyone that has experienced > the same thing , > could you please help me understand what this is all > about. My doc > just kept on saying , I think it will be ok, or it > should come back > up!! Thanks Eva B > > > > [Non-text portions of this message have been > removed] > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 13, 2008 Report Share Posted June 13, 2008 Just to make things clear, what really counts for infections is the absolute neutrophil count (ANC), that you obtain by multiplying the total white cell count (WBC) by the percentage of neutrophils (divided by 100). So if the WBC is 3 and the neutrophils 60%, the ANC is 3*60/100=1.8 So you can have your WBC at 3 (or even 2) and still have the ANC above 1, what is the number the dr look for. Tracey is right, low WBC counts are common at the beginning of the remission, gleevec wipe out quickly pretty much any mature cml cell, and it take some time for the normal blood stem cells to recolonize the bone marrow and start producing enough normal mature white cells. Marcos. On Thu, Jun 12, 2008 at 6:11 PM, china neal <chimera46@...> wrote: > Eva- > > Is your doc a CML specialist? I agree with Tracey- I > dropped to 1- my doc wouldn't move me to 400 mg up > from the 3 I started with until I reached 5. I told > him 400 was the therapeutic dosage and that was where > I wanted to be- so I chanted 5 everday and put a sign > up at work " 5 " . I didn't even get a cold - I went to > 5 and he increased to 400mg.. But everyone is > different. Non- cml docs may not understand how our > little gold works. We are not your average bears. > > Hang in there and I am sure soon Zavie will be > assigning you your own number. I think I'm 1137 but > then with Chemo brain---who knows-smile. > > Chi > > > --- Tracey <traceyincanada@... <traceyincanada%40>> wrote: > > > Hi Eva, > > > > Don't panic, this is very common in the early months > > of Gleevec > > treatment. Your neutrophils aren't really that low, > > many members > > have had lower than that. > > > > Ideally they want your count to be 1 or above so you > > see, you're just > > barely below that. Many of the top CML doctors will > > let the counts > > drop below the 1 without doing anything because > > they've found that > > it's not such a big deal afterall. It's a bigger > > problem when your > > count gets around 0.5. > > > > In the early days of treatment, the Gleevec is > > killing off many > > leukemic cells (which are mostly neutrophils) and it > > takes some time > > to generate a new population of good healthy cells > > so that's why your > > count is low. Give it some time and your count > > should bounce back up > > nicely. > > > > For a few patients who have problems with > > chronically low counts, > > there's a drug called Neupogen which can grow > > neutrophils so there > > are other options besides Sprycel if you happen to > > have an ongoing > > problem with low neutrophils but you're not even > > close to crossing > > that bridge yet so please try not to worry. > > > > Take care, > > Tracey > > > > > > > > > > Hi gang; I just got home from the doctors and my > > Gleevec is working > > too well or something. My wbc is 2.8 . The doctor > > says my Neutrophils > > are too low 0.9. She said this leaves me > > vulnerable to infection so > > just when I was settling in quite nicely I have to > > go off Gleevec for > > a week and if my counts don't improve I may have to > > switch to > > Sprycel. I know nothing about Sprycel and now I am > > very nervous about > > what will happen next. Anyone that has experienced > > the same thing , > > could you please help me understand what this is all > > about. My doc > > just kept on saying , I think it will be ok, or it > > should come back > > up!! Thanks Eva B > > > > > > [Non-text portions of this message have been > > removed] > > > > > > > > > > > > -- Marcos Perreau Guimaraes Suppes Brain Lab Ventura Hall - CSLI Stanford University 220 Panama street Stanford CA 94305-4101 650 614 2305 650 630 5015 (cell) marcospg@... montereyunderwater@... www.stanford.edu/~marcospg/ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 13, 2008 Report Share Posted June 13, 2008 Thanks Marcos. My WBC is 2.8 and my Neutrophils are 0.9. I was never good at math. I just was starting to have only a little bone pain. My weight loss had slowed down ( 104) . I was foolish enough to think I was on my way to feeling better. This has just kind of scared me. I am still getting used to all this . I will keep you posted how things are going. Thank you sooo much. God Bless you all. Eva B From: Marcos Perreau Guimaraes Sent: Thursday, June 12, 2008 10:00 PM Subject: Re: [ ] Neutropenia-Eva Just to make things clear, what really counts for infections is the absolute neutrophil count (ANC), that you obtain by multiplying the total white cell count (WBC) by the percentage of neutrophils (divided by 100). So if the WBC is 3 and the neutrophils 60%, the ANC is 3*60/100=1.8 So you can have your WBC at 3 (or even 2) and still have the ANC above 1, what is the number the dr look for. Tracey is right, low WBC counts are common at the beginning of the remission, gleevec wipe out quickly pretty much any mature cml cell, and it take some time for the normal blood stem cells to recolonize the bone marrow and start producing enough normal mature white cells. Marcos. On Thu, Jun 12, 2008 at 6:11 PM, china neal <chimera46@...> wrote: > Eva- > > Is your doc a CML specialist? I agree with Tracey- I > dropped to 1- my doc wouldn't move me to 400 mg up > from the 3 I started with until I reached 5. I told > him 400 was the therapeutic dosage and that was where > I wanted to be- so I chanted 5 everday and put a sign > up at work " 5 " . I didn't even get a cold - I went to > 5 and he increased to 400mg.. But everyone is > different. Non- cml docs may not understand how our > little gold works. We are not your average bears. > > Hang in there and I am sure soon Zavie will be > assigning you your own number. I think I'm 1137 but > then with Chemo brain---who knows-smile. > > Chi > > > --- Tracey <traceyincanada@... <traceyincanada%40>> wrote: > > > Hi Eva, > > > > Don't panic, this is very common in the early months > > of Gleevec > > treatment. Your neutrophils aren't really that low, > > many members > > have had lower than that. > > > > Ideally they want your count to be 1 or above so you > > see, you're just > > barely below that. Many of the top CML doctors will > > let the counts > > drop below the 1 without doing anything because > > they've found that > > it's not such a big deal afterall. It's a bigger > > problem when your > > count gets around 0.5. > > > > In the early days of treatment, the Gleevec is > > killing off many > > leukemic cells (which are mostly neutrophils) and it > > takes some time > > to generate a new population of good healthy cells > > so that's why your > > count is low. Give it some time and your count > > should bounce back up > > nicely. > > > > For a few patients who have problems with > > chronically low counts, > > there's a drug called Neupogen which can grow > > neutrophils so there > > are other options besides Sprycel if you happen to > > have an ongoing > > problem with low neutrophils but you're not even > > close to crossing > > that bridge yet so please try not to worry. > > > > Take care, > > Tracey > > > > > > > > > > Hi gang; I just got home from the doctors and my > > Gleevec is working > > too well or something. My wbc is 2.8 . The doctor > > says my Neutrophils > > are too low 0.9. She said this leaves me > > vulnerable to infection so > > just when I was settling in quite nicely I have to > > go off Gleevec for > > a week and if my counts don't improve I may have to > > switch to > > Sprycel. I know nothing about Sprycel and now I am > > very nervous about > > what will happen next. Anyone that has experienced > > the same thing , > > could you please help me understand what this is all > > about. My doc > > just kept on saying , I think it will be ok, or it > > should come back > > up!! Thanks Eva B > > > > > > [Non-text portions of this message have been > > removed] > > > > > > > > > > > > -- Marcos Perreau Guimaraes Suppes Brain Lab Ventura Hall - CSLI Stanford University 220 Panama street Stanford CA 94305-4101 650 614 2305 650 630 5015 (cell) marcospg@... montereyunderwater@... www.stanford.edu/~marcospg/ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 13, 2008 Report Share Posted June 13, 2008 Thanks Chi, My doctor is a hematological oncologist. She says to stay off the Gleevec for a week and see what happens , I just thought I was doing really well. It is just strange being told not to miss a pill and now it is ok to take nothing for a week. God Bless Eva B From: china neal Sent: Thursday, June 12, 2008 9:11 PM Subject: Re: [ ] Neutropenia-Eva Eva- Is your doc a CML specialist? I agree with Tracey- I dropped to 1- my doc wouldn't move me to 400 mg up from the 3 I started with until I reached 5. I told him 400 was the therapeutic dosage and that was where I wanted to be- so I chanted 5 everday and put a sign up at work " 5 " . I didn't even get a cold - I went to 5 and he increased to 400mg.. But everyone is different. Non- cml docs may not understand how our little gold works. We are not your average bears. Hang in there and I am sure soon Zavie will be assigning you your own number. I think I'm 1137 but then with Chemo brain---who knows-smile. Chi --- Tracey <traceyincanada@...> wrote: > Hi Eva, > > Don't panic, this is very common in the early months > of Gleevec > treatment. Your neutrophils aren't really that low, > many members > have had lower than that. > > Ideally they want your count to be 1 or above so you > see, you're just > barely below that. Many of the top CML doctors will > let the counts > drop below the 1 without doing anything because > they've found that > it's not such a big deal afterall. It's a bigger > problem when your > count gets around 0.5. > > In the early days of treatment, the Gleevec is > killing off many > leukemic cells (which are mostly neutrophils) and it > takes some time > to generate a new population of good healthy cells > so that's why your > count is low. Give it some time and your count > should bounce back up > nicely. > > For a few patients who have problems with > chronically low counts, > there's a drug called Neupogen which can grow > neutrophils so there > are other options besides Sprycel if you happen to > have an ongoing > problem with low neutrophils but you're not even > close to crossing > that bridge yet so please try not to worry. > > Take care, > Tracey > > > > > > Hi gang; I just got home from the doctors and my > Gleevec is working > too well or something. My wbc is 2.8 . The doctor > says my Neutrophils > are too low 0.9. She said this leaves me > vulnerable to infection so > just when I was settling in quite nicely I have to > go off Gleevec for > a week and if my counts don't improve I may have to > switch to > Sprycel. I know nothing about Sprycel and now I am > very nervous about > what will happen next. Anyone that has experienced > the same thing , > could you please help me understand what this is all > about. My doc > just kept on saying , I think it will be ok, or it > should come back > up!! Thanks Eva B > > > > [Non-text portions of this message have been > removed] > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 13, 2008 Report Share Posted June 13, 2008 I also lost a lot of weight at the beginning. It actually started a while before dx, I wasn't doing so good for at least a year. My health had been going up and down since I left the army in 93, so I didn't pay that much attention to it until the side pain and I started melting away. I kept loosing weight until 3-4 weeks after dx, I got down to about 135lbs (I am 6'2, my normal weight is 185, and I am pretty lean at that weight). It was really spooky. But as soon as I was in blood remission I got very quickly back to 170-180lbs. Now 3 1/2 after I am 180. I am trying to keep light as I am climbing quite a bit this last year (I am just back from the wall). Now I am not 25 any more but I am in the best shape I have been in the last 15 years. Keep you spirits, it will get better. Cheers, Marcos. On Thu, Jun 12, 2008 at 7:48 PM, Eva <evaob365@...> wrote: > Thanks Marcos. My WBC is 2.8 and my Neutrophils are 0.9. I was never > good at math. I just was starting to have only a little bone pain. My weight > loss had slowed down ( 104) . I was foolish enough to think I was on my way > to feeling better. This has just kind of scared me. I am still getting used > to all this . I will keep you posted how things are going. Thank you sooo > much. God Bless you all. Eva B > > From: Marcos Perreau Guimaraes > Sent: Thursday, June 12, 2008 10:00 PM > <%40> > Subject: Re: [ ] Neutropenia-Eva > > > Just to make things clear, what really counts for infections is the > absolute > neutrophil count (ANC), that you obtain by multiplying the total white cell > count (WBC) by the percentage of neutrophils (divided by 100). So if the > WBC > is 3 and the neutrophils 60%, the ANC is 3*60/100=1.8 > So you can have your WBC at 3 (or even 2) and still have the ANC above 1, > what is the number the dr look for. > Tracey is right, low WBC counts are common at the beginning of the > remission, gleevec wipe out quickly pretty much any mature cml cell, and it > take some time for the normal blood stem cells to recolonize the bone > marrow > and start producing enough normal mature white cells. > Marcos. > > On Thu, Jun 12, 2008 at 6:11 PM, china neal <chimera46@...<chimera46%40>> > wrote: > > > Eva- > > > > Is your doc a CML specialist? I agree with Tracey- I > > dropped to 1- my doc wouldn't move me to 400 mg up > > from the 3 I started with until I reached 5. I told > > him 400 was the therapeutic dosage and that was where > > I wanted to be- so I chanted 5 everday and put a sign > > up at work " 5 " . I didn't even get a cold - I went to > > 5 and he increased to 400mg.. But everyone is > > different. Non- cml docs may not understand how our > > little gold works. We are not your average bears. > > > > Hang in there and I am sure soon Zavie will be > > assigning you your own number. I think I'm 1137 but > > then with Chemo brain---who knows-smile. > > > > Chi > > > > > > --- Tracey <traceyincanada@... <traceyincanada%40><traceyincanada% > 40>> wrote: > > > > > Hi Eva, > > > > > > Don't panic, this is very common in the early months > > > of Gleevec > > > treatment. Your neutrophils aren't really that low, > > > many members > > > have had lower than that. > > > > > > Ideally they want your count to be 1 or above so you > > > see, you're just > > > barely below that. Many of the top CML doctors will > > > let the counts > > > drop below the 1 without doing anything because > > > they've found that > > > it's not such a big deal afterall. It's a bigger > > > problem when your > > > count gets around 0.5. > > > > > > In the early days of treatment, the Gleevec is > > > killing off many > > > leukemic cells (which are mostly neutrophils) and it > > > takes some time > > > to generate a new population of good healthy cells > > > so that's why your > > > count is low. Give it some time and your count > > > should bounce back up > > > nicely. > > > > > > For a few patients who have problems with > > > chronically low counts, > > > there's a drug called Neupogen which can grow > > > neutrophils so there > > > are other options besides Sprycel if you happen to > > > have an ongoing > > > problem with low neutrophils but you're not even > > > close to crossing > > > that bridge yet so please try not to worry. > > > > > > Take care, > > > Tracey > > > > > > > > > > > > > > Hi gang; I just got home from the doctors and my > > > Gleevec is working > > > too well or something. My wbc is 2.8 . The doctor > > > says my Neutrophils > > > are too low 0.9. She said this leaves me > > > vulnerable to infection so > > > just when I was settling in quite nicely I have to > > > go off Gleevec for > > > a week and if my counts don't improve I may have to > > > switch to > > > Sprycel. I know nothing about Sprycel and now I am > > > very nervous about > > > what will happen next. Anyone that has experienced > > > the same thing , > > > could you please help me understand what this is all > > > about. My doc > > > just kept on saying , I think it will be ok, or it > > > should come back > > > up!! Thanks Eva B > > > > > > > > [Non-text portions of this message have been > > > removed] > > > > > > > > > > > > > > > > > > > > > -- > Marcos Perreau Guimaraes > Suppes Brain Lab > Ventura Hall - CSLI > Stanford University > 220 Panama street > Stanford CA 94305-4101 > 650 614 2305 > 650 630 5015 (cell) > marcospg@... <marcospg%40csli.stanford.edu> > montereyunderwater@... <montereyunderwater%40gmail.com> > www.stanford.edu/~marcospg/ > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 14, 2008 Report Share Posted June 14, 2008 Marcos, My labs don't have the Nuetrophils or ANC listed.Is it listed as something else or do i need some other test than the ones I posted about 10 days ago? I would like to calculate like you just did but don't have either of those listed on my labs.. Thanks for the help(my labs say WBC is 19.8 SharonS In , " Marcos Perreau Guimaraes " <montereyunderwater@...> wrote: > > Just to make things clear, what really counts for infections is the absolute > neutrophil count (ANC), that you obtain by multiplying the total white cell > count (WBC) by the percentage of neutrophils (divided by 100). So if the WBC > is 3 and the neutrophils 60%, the ANC is 3*60/100=1.8 > So you can have your WBC at 3 (or even 2) and still have the ANC above 1, > what is the number the dr look for. > Tracey is right, low WBC counts are common at the beginning of the > remission, gleevec wipe out quickly pretty much any mature cml cell, and it > take some time for the normal blood stem cells to recolonize the bone marrow > and start producing enough normal mature white cells. > Marcos. > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 14, 2008 Report Share Posted June 14, 2008 There's two automated blood count tests (CBC) : non differential and differential. More counting manual tests but those are not routine. The neutrophil count is in my CBC differential test (with % monocytes, lymphocytes, eisonophils, basophils, etc). The CBC non differential has the total WBC, RBC, hemoglobin, RDW, platelets, etc. I have both test every month. Marcos. On Fri, Jun 13, 2008 at 4:52 PM, serenitywon <serenitywon@...> wrote: > Marcos, > My labs don't have the Nuetrophils or ANC listed.Is it listed as > something else or do i need some other test than the ones I posted > about 10 days ago? I would like to calculate like you just did but > don't have either of those listed on my labs.. > Thanks > for the help(my labs say WBC is 19.8 > SharonS > > In <%40>, " Marcos Perreau > Guimaraes " > <montereyunderwater@...> wrote: > > > > Just to make things clear, what really counts for infections is the > absolute > > neutrophil count (ANC), that you obtain by multiplying the total > white cell > > count (WBC) by the percentage of neutrophils (divided by 100). So > if the WBC > > is 3 and the neutrophils 60%, the ANC is 3*60/100=1.8 > > So you can have your WBC at 3 (or even 2) and still have the ANC > above 1, > > what is the number the dr look for. > > Tracey is right, low WBC counts are common at the beginning of the > > remission, gleevec wipe out quickly pretty much any mature cml > cell, and it > > take some time for the normal blood stem cells to recolonize the > bone marrow > > and start producing enough normal mature white cells. > > Marcos. > > > > > > > -- Marcos Perreau Guimaraes Suppes Brain Lab Ventura Hall - CSLI Stanford University 220 Panama street Stanford CA 94305-4101 650 614 2305 650 630 5015 (cell) marcospg@... montereyunderwater@... www.stanford.edu/~marcospg/ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 14, 2008 Report Share Posted June 14, 2008 Marcos, Thanks for explaining that to me..My labs don't have it listed in the Differential or the non-differential.I will ask for that to be added next time. Thanks SharonS In , " Marcos Perreau Guimaraes " <montereyunderwater@...> wrote: > > There's two automated blood count tests (CBC) : non differential and > differential. More counting manual tests but those are not routine. > The neutrophil count is in my CBC differential test (with % monocytes, > lymphocytes, eisonophils, basophils, etc). The CBC non differential has the > total WBC, RBC, hemoglobin, RDW, platelets, etc. > I have both test every month. > Marcos. > > Quote Link to comment Share on other sites More sharing options...
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