Guest guest Posted June 18, 2008 Report Share Posted June 18, 2008 Hi Eva, One point I would like to make on this that my first Onc made to me, he stated: " you are the customer, we are here to serve and take care of you! " I took that to heart. I would like to think of the Onc's as partner's not some bossy parent, if you will. Like when we were all little kids, " mom, why? " " Because I said so! " No reason given, just because they, in their infinite wisdom decided so. I have a meeting with my Onc tomorrow. I already know he wants me to stop Gleevec and start Sprycell. The matter to me is this, I am not ready for the change. I am in my busy season with work, I cannot afford any stuff up's this time of year, or start feeling bad, etc. So, I am going to suggest as I have a 60 day supply of Gleevec, to stay the course for two more months and then let's see where we are. I do suffer fatigue and headache's, but just recently I am feeling as though I am turning the corner on them. So, we shall see. My point being, I feel he is there to advise and of course protect me, but I should have a say so in the treatment. Cheers, Chris **************Gas prices getting you down? Search AOL Autos for fuel-efficient used cars. (http://autos.aol.com/used?ncid=aolaut00050000000007) Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 18, 2008 Report Share Posted June 18, 2008 Hey Eva, I hope you investigate ALL your other options. Take your options to your oncologist and ask her to try the one YOU want to. Gleevec can tank some of your count... as do other meds. There are many who take litle breaks only to restart again in order to bring up your counts. - doctor supervised. There are medications like tasigna which I am on) and there are others like sprycel. My oncologist always wanted to save the other meds in case I became gleevec resistant. I am not sure but I think if you google gleevec you will find the medication protocol flow chart which would direct you both in the options for you. I had terrible side effects with gleevec. I took a 10 week break ( under the direction of Druker and my oncologist) and returned to the dosage of 300 mg. Unfortunately, te side effects returned. So I switched to tasigna. I just know there are options and I would not settle for an " I don't know " from ANY doctor. You also might write Druker to see what he would suggest. He answers ALL emails. I am gong on line now to see if I can find the flow chart for you. Best of luck Barb in AZ > > > > > From: Eva > Sent: Monday, June 16, 2008 10:42 PM > KTTWEETY@... > Subject: Re: ANC ! ! ! > > > Hi , I am 52 yrs old. My doc told me than my Neutrophils were 0.9 , told me to stop taking Gleevec and that I was to come back in one week and if my levels weren't better than I would probably have to go on Sprycel. I was alarmed. She was so matter of fact . My husband was with me for the first time and he was mad , there was no discussing any other options she just kept on saying , " I don't think so " We asked if I could just take half of my Gleevec and she said No , I don't think so . I was doing really well. I wasn't have any side effects anymore and I was starting to feel like myself again. I was finally feeling relaxed and was not feeling like I was going to die anymore. I go back this Wednesday we will see what she says. Thanks for your input. Eva > > LKCS 2.8 > HGB 123 > HCT 0.355 > > MCV 105.0 > Neutrophils 0.9 > Lymphocytes 1.5 > Monocytes 0.3 > Eosinophils 0.09 > Basophils 0.01 > LD 681 > > > > From: IAintFinishedYet > Sent: Monday, June 16, 2008 5:32 PM > Eva > Subject: ANC ! ! ! > > > Hey Sister Survivor. . . > I don't know your age off-hand, however; I do know that I had very low ANC counts after diagnosis. So low, that when my daughter took me to a hospital in another county, my boy~~Doctor; wanting access to the hospital; told me to be admitted or I would die if I didn't let them admit me from the low ANC count. > The fact that it was over 40+ miles away; I left against medical advise and went to my hospital. I ended up firing this doctor for not giving my pain medication to me while he was oncall for 2 days. Stating that my pain wasn't caused by my Cancer and he wasn't giving me narcotics. > Back to the subject, I didn't have a 2nd or 3rd generation medication to take then and I am now in my 5th year as a Survivor. I know that middle-age survivors with other Chronic health issues, like myself; aren't doing very well on Sprycel, etc. for longevity, our gold~~Gleevec is the medication for us. Sprycel causes Pleural Effusion, Heart issues, etc., It is for patients who fail or become intolerant to our Gold. . ..not as an either/or medication. Though some Physicians are prescribing it initially. Please get all information before you switch, because some Survivors haven't been able to go back to Gleevec after being on Sprycel., and are having Lung & Heart issues. I am not saying this to alarm you, I want you to educate yourself, before proceeding to Sprycel. A low ANC count doesn't mean you have failed Gleevec therapy . . . I was hospitalied 3xs with low ANC after diagnosis . . . > I AM A SURVIVOR. . .I AIN'T FINISHED YET ! ! ! > Remember also, that the H/O~~Hematologists/Oncologists are learning about our disease through us, we are the 1st Survivors~~Pioneers of our disease. We cannot let them make Guinea Pigs out of us. . .we must remain informed and educated Pioneers/Warriors for future Survivors. They look at each of us as a Statistic. . .I consider each of us an Individual and we must be active, informed, and educated in our treatment for our Survival. I personally don't want to lose another Brother or Sister Survivor who has let his/her Doctor use as a Guinea Pig without knowing ALL the pros and cons. I have seen enough of that since my diagnosis in 2003 and the morbid mortality I was given at that time. > This is FYI~~my 2 cents only. I am not Doctor, never portrayed one on TV, nor do I aspire to be a Physician in another life. > Take care, I have you in my prayers. . . " K " > > > > " K " > " I AIN'T FINISHED YET " !!! > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 18, 2008 Report Share Posted June 18, 2008 Hi Eva, Are these numbers your test results ? I thought the differential numbers : Neutrophils 0.9 Lymphocytes 1.5 Monocytes 0.3 Eosinophils 0.09 Basophils 0.01 should sum to 1 (or close), are you sure you typed it right ? I am guessing the 1.5 is 0.15, but still it doesn't add up to 1. From what I am reading you white cell count is 2.8 and the Neutrophils 90%, that's more Absolute Neutrophil Count (ANC) than what I have ! It is way above 1, it's 2.9*0.9 = 2.52. My other guess is that you Neutrophils are around 45% (0.45) and then the ANC is about 1.3. Tracey, can you take a look at these numbers ? Marcos. LKCS 2.8 HGB 123 HCT 0.355 MCV 105.0 Neutrophils 0.9 On Wed, Jun 18, 2008 at 6:19 AM, Eva <evaob365@...> wrote: > > > From: Eva > Sent: Monday, June 16, 2008 10:42 PM > KTTWEETY@... <KTTWEETY%40sbcglobal.net> > Subject: Re: ANC ! ! ! > > Hi , I am 52 yrs old. My doc told me than my Neutrophils were 0.9 , told me > to stop taking Gleevec and that I was to come back in one week and if my > levels weren't better than I would probably have to go on Sprycel. I was > alarmed. She was so matter of fact . My husband was with me for the first > time and he was mad , there was no discussing any other options she just > kept on saying , " I don't think so " We asked if I could just take half of my > Gleevec and she said No , I don't think so . I was doing really well. I > wasn't have any side effects anymore and I was starting to feel like myself > again. I was finally feeling relaxed and was not feeling like I was going to > die anymore. I go back this Wednesday we will see what she says. Thanks for > your input. Eva > > LKCS 2.8 > HGB 123 > HCT 0.355 > > MCV 105.0 > Neutrophils 0.9 > Lymphocytes 1.5 > Monocytes 0.3 > Eosinophils 0.09 > Basophils 0.01 > LD 681 > > From: IAintFinishedYet > Sent: Monday, June 16, 2008 5:32 PM > Eva > Subject: ANC ! ! ! > > Hey Sister Survivor. . . > I don't know your age off-hand, however; I do know that I had very low ANC > counts after diagnosis. So low, that when my daughter took me to a hospital > in another county, my boy~~Doctor; wanting access to the hospital; told me > to be admitted or I would die if I didn't let them admit me from the low ANC > count. > The fact that it was over 40+ miles away; I left against medical advise and > went to my hospital. I ended up firing this doctor for not giving my pain > medication to me while he was oncall for 2 days. Stating that my pain wasn't > caused by my Cancer and he wasn't giving me narcotics. > Back to the subject, I didn't have a 2nd or 3rd generation medication to > take then and I am now in my 5th year as a Survivor. I know that middle-age > survivors with other Chronic health issues, like myself; aren't doing very > well on Sprycel, etc. for longevity, our gold~~Gleevec is the medication for > us. Sprycel causes Pleural Effusion, Heart issues, etc., It is for patients > who fail or become intolerant to our Gold. . .not as an either/or > medication. Though some Physicians are prescribing it initially. Please get > all information before you switch, because some Survivors haven't been able > to go back to Gleevec after being on Sprycel., and are having Lung & Heart > issues. I am not saying this to alarm you, I want you to educate yourself, > before proceeding to Sprycel. A low ANC count doesn't mean you have failed > Gleevec therapy . . . I was hospitalied 3xs with low ANC after diagnosis . . > . > I AM A SURVIVOR. . .I AIN'T FINISHED YET ! ! ! > Remember also, that the H/O~~Hematologists/Oncologists are learning about > our disease through us, we are the 1st Survivors~~Pioneers of our disease. > We cannot let them make Guinea Pigs out of us. . .we must remain informed > and educated Pioneers/Warriors for future Survivors. They look at each of us > as a Statistic. . .I consider each of us an Individual and we must be > active, informed, and educated in our treatment for our Survival. I > personally don't want to lose another Brother or Sister Survivor who has let > his/her Doctor use as a Guinea Pig without knowing ALL the pros and cons. I > have seen enough of that since my diagnosis in 2003 and the morbid mortality > I was given at that time. > This is FYI~~my 2 cents only. I am not Doctor, never portrayed one on TV, > nor do I aspire to be a Physician in another life. > Take care, I have you in my prayers. . . " K " > > " K " > " I AIN'T FINISHED YET " !!! > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 18, 2008 Report Share Posted June 18, 2008 > > Hi Eva, > Are these numbers your test results ? I thought the differential numbers : > Neutrophils 0.9 > Lymphocytes 1.5 > Monocytes 0.3 > Eosinophils 0.09 > Basophils 0.01 > > should sum to 1 (or close), are you sure you typed it right ? I am guessing > the 1.5 is 0.15, but still it doesn't add up to 1. From what I am reading > you white cell count is 2.8 and the Neutrophils 90%, that's more Absolute > Neutrophil Count (ANC) than what I have ! It is way above 1, it's 2.9*0.9 = > 2.52. My other guess is that you Neutrophils are around 45% (0.45) and then > the ANC is about 1.3. Tracey, can you take a look at these numbers ? > Marcos. > Eva. Marcos is on the right track. This is from the automated lab report combining the frequency of the cells (a %) with the total white blood cell count. Your WBC is 2.8 (x10e3/ul) or 2,800 WBC per microliter of blood. Normal range is 5-11 (5,000 - 11,000). The key number is the ANC (Absolute Neutrophil Count) is 0.9 which equals 900 per microliter. Any number below 1000 calls for holding the drug. The ANC should start to rise and the drug can be restarted at a later date. Available options are hold Gleevec until the ANC count rises. The drug can be restarted at a later date at the orignal dose or even a lower one. Another option is to switch to the second generation drugs like Sprycel or Tasigna. However, there is a chance that the ANC may drop again with any of these options. I have noted that low ANC or platelets can be often managed by holding and restarting drug (even several times) until the marrow begins to convert to producing normal cells. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 18, 2008 Report Share Posted June 18, 2008 Hi Eva and Marcos, The white count consists of the total number of white cells in the differential (neutrophils, lymphocytes, monocytes, eosinophils and basophils) all added together. So given the differential numbers listed below, they add up to 2.8 which is consistent with the 2.8 listed as the WBC. In this case, the differential is listed in absolute numbers (as opposed to percentages which I think is what threw you off Marcos?). Since the ANC here is already calculated by the lab (0.9) there's no need to do any further calculations but on some lab reports, they only list the neutrophil percentage so you need to do the math to figure out what the absolute count is. The formula is WBC x Neutrophil percentage = ANC Ideally, they want to see your ANC above 1.0 so 0.9 is barely below that. Most doctors are much more willing to see the ANC drop slightly below that though, more so than they were in previous years because they realize that low counts are pretty much to be expected in the early days of treatment and it doesn't pose as much of a risk as they once feared. I don't see how Sprycel would be any different in terms of inducing neutropenia (low ANC) so I'm not sure why that option is even being discussed at this early point. Incidentally, it is far better to interrupt treatment and wait for counts to recover than to reduce the dosage because there is a chance that you could induce resistance if a sub-optimal dose is given so don't worry about taking a Gleevec break Eva, this is the standard way of treating low counts. Tracey > > > > > > > From: Eva > > Sent: Monday, June 16, 2008 10:42 PM > > KTTWEETY@... <KTTWEETY%40sbcglobal.net> > > Subject: Re: ANC ! ! ! > > > > Hi , I am 52 yrs old. My doc told me than my Neutrophils were 0.9 , told me > > to stop taking Gleevec and that I was to come back in one week and if my > > levels weren't better than I would probably have to go on Sprycel. I was > > alarmed. She was so matter of fact . My husband was with me for the first > > time and he was mad , there was no discussing any other options she just > > kept on saying , " I don't think so " We asked if I could just take half of my > > Gleevec and she said No , I don't think so . I was doing really well. I > > wasn't have any side effects anymore and I was starting to feel like myself > > again. I was finally feeling relaxed and was not feeling like I was going to > > die anymore. I go back this Wednesday we will see what she says. Thanks for > > your input. Eva > > > > LKCS 2.8 > > HGB 123 > > HCT 0.355 > > > > MCV 105.0 > > Neutrophils 0.9 > > Lymphocytes 1.5 > > Monocytes 0.3 > > Eosinophils 0.09 > > Basophils 0.01 > > LD 681 > > > > From: IAintFinishedYet > > Sent: Monday, June 16, 2008 5:32 PM > > Eva > > Subject: ANC ! ! ! > > > > Hey Sister Survivor. . . > > I don't know your age off-hand, however; I do know that I had very low ANC > > counts after diagnosis. So low, that when my daughter took me to a hospital > > in another county, my boy~~Doctor; wanting access to the hospital; told me > > to be admitted or I would die if I didn't let them admit me from the low ANC > > count. > > The fact that it was over 40+ miles away; I left against medical advise and > > went to my hospital. I ended up firing this doctor for not giving my pain > > medication to me while he was oncall for 2 days. Stating that my pain wasn't > > caused by my Cancer and he wasn't giving me narcotics. > > Back to the subject, I didn't have a 2nd or 3rd generation medication to > > take then and I am now in my 5th year as a Survivor. I know that middle-age > > survivors with other Chronic health issues, like myself; aren't doing very > > well on Sprycel, etc. for longevity, our gold~~Gleevec is the medication for > > us. Sprycel causes Pleural Effusion, Heart issues, etc., It is for patients > > who fail or become intolerant to our Gold. . .not as an either/or > > medication. Though some Physicians are prescribing it initially. Please get > > all information before you switch, because some Survivors haven't been able > > to go back to Gleevec after being on Sprycel., and are having Lung & Heart > > issues. I am not saying this to alarm you, I want you to educate yourself, > > before proceeding to Sprycel. A low ANC count doesn't mean you have failed > > Gleevec therapy . . . I was hospitalied 3xs with low ANC after diagnosis . . > > . > > I AM A SURVIVOR. . .I AIN'T FINISHED YET ! ! ! > > Remember also, that the H/O~~Hematologists/Oncologists are learning about > > our disease through us, we are the 1st Survivors~~Pioneers of our disease. > > We cannot let them make Guinea Pigs out of us. . .we must remain informed > > and educated Pioneers/Warriors for future Survivors. They look at each of us > > as a Statistic. . .I consider each of us an Individual and we must be > > active, informed, and educated in our treatment for our Survival. I > > personally don't want to lose another Brother or Sister Survivor who has let > > his/her Doctor use as a Guinea Pig without knowing ALL the pros and cons. I > > have seen enough of that since my diagnosis in 2003 and the morbid mortality > > I was given at that time. > > This is FYI~~my 2 cents only. I am not Doctor, never portrayed one on TV, > > nor do I aspire to be a Physician in another life. > > Take care, I have you in my prayers. . . " K " > > > > " K " > > " I AIN'T FINISHED YET " !!! > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 18, 2008 Report Share Posted June 18, 2008 Hello im dante! just need to ask you guys qustion i got similiar result like his.. can u find out if mine is good or bad? heres the result: WBC: 6.69Â Â RBC:4.99Â Hgb: 13.9*LÂ Hct: 41.1Â MCV: 82.4Â MCH: 27.9*LÂ Â MCHC: 33.8Â RDW: 15.2*HÂ Platelets: 185 MVP: 9.9Â Neut %: 56.4Â Lymph %: 36.6Â Mono %: 5.7Â Eo %:1.2Â Baso %: 0.1Â Neut #-ABS: 3.77Â Lymph #-ABS: 2.45Â Mono #-ABS: 0.38Â Â Eo # -ABS:0.08Â Baso #-ABS: 0.01Â Please let me know if should worry.. Thanks! From: <timothyfarley16@...> Subject: Re: [ ] Fw: ANC ! ! ! Date: Wednesday, June 18, 2008, 11:46 AM > > Hi Eva, > Are these numbers your test results ? I thought the differential numbers : > Neutrophils 0.9 > Lymphocytes 1.5 > Monocytes 0.3 > Eosinophils 0.09 > Basophils 0.01 > > should sum to 1 (or close), are you sure you typed it right ? I am guessing > the 1.5 is 0.15, but still it doesn't add up to 1. From what I am reading > you white cell count is 2.8 and the Neutrophils 90%, that's more Absolute > Neutrophil Count (ANC) than what I have ! It is way above 1, it's 2.9*0.9 = > 2.52. My other guess is that you Neutrophils are around 45% (0.45) and then > the ANC is about 1.3. Tracey, can you take a look at these numbers ? > Marcos. > Eva. Marcos is on the right track. This is from the automated lab report combining the frequency of the cells (a %) with the total white blood cell count. Your WBC is 2.8 (x10e3/ul) or 2,800 WBC per microliter of blood. Normal range is 5-11 (5,000 - 11,000). The key number is the ANC (Absolute Neutrophil Count) is 0.9 which equals 900 per microliter. Any number below 1000 calls for holding the drug. The ANC should start to rise and the drug can be restarted at a later date. Available options are hold Gleevec until the ANC count rises. The drug can be restarted at a later date at the orignal dose or even a lower one. Another option is to switch to the second generation drugs like Sprycel or Tasigna. However, there is a chance that the ANC may drop again with any of these options. I have noted that low ANC or platelets can be often managed by holding and restarting drug (even several times) until the marrow begins to convert to producing normal cells. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 18, 2008 Report Share Posted June 18, 2008 Hi Dante, You have absolultely perfect counts. Looking at these counts, no one would know you ever had CML so please don't worry about anything, everything here is fine. Tracey > > > > Hi Eva, > > Are these numbers your test results ? I thought the differential > numbers : > > Neutrophils 0.9 > > Lymphocytes 1.5 > > Monocytes 0.3 > > Eosinophils 0.09 > > Basophils 0.01 > > > > should sum to 1 (or close), are you sure you typed it right ? I am > guessing > > the 1.5 is 0.15, but still it doesn't add up to 1. From what I am > reading > > you white cell count is 2.8 and the Neutrophils 90%, that's more > Absolute > > Neutrophil Count (ANC) than what I have ! It is way above 1, it's > 2.9*0.9 = > > 2.52. My other guess is that you Neutrophils are around 45% (0.45) > and then > > the ANC is about 1.3. Tracey, can you take a look at these numbers ? > > Marcos. > > > > Eva. > > Marcos is on the right track. This is from the automated lab report > combining the frequency of the cells (a %) with the total white blood > cell count. > > Your WBC is 2.8 (x10e3/ul) or 2,800 WBC per microliter of blood. > Normal range is 5-11 (5,000 - 11,000). The key number is the ANC > (Absolute Neutrophil Count) is 0.9 which equals 900 per microliter. > Any number below 1000 calls for holding the drug. The ANC should > start to rise and the drug can be restarted at a later date. > > Available options are hold Gleevec until the ANC count rises. The > drug can be restarted at a later date at the orignal dose or even a > lower one. Another option is to switch to the second generation > drugs like Sprycel or Tasigna. However, there is a chance that the > ANC may drop again with any of these options. > > I have noted that low ANC or platelets can be often managed by > holding and restarting drug (even several times) until the marrow > begins to convert to producing normal cells. > > > > > > > > > > > > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 18, 2008 Report Share Posted June 18, 2008 Hi Eva, I just want to let you know how Dr. Kantarjian of MD handled this situation with me many years ago when I started Gleevec. I too quickly became neutropenic with an anc of .9. I was on a trial so all my labs were being sent to MDACC. When they got the result of .9 they called me and told me I would need to stop the drug. I did that but just a couple days later I went to Houston for my checkup with Dr. K. My anc was still low. He told me that since I was in an extended Phase II trial I was not critical to the statistics and he said-- " go back on the drug and don't get a cbc for 6 week--that way you won't have to go off the drug and you will do better in the long run. " He was sure my anc would recover and he was right. You can't make progress when you're not on treatment. I never took another break from Gleevec. I also didn't get sick even though at one point my anc did go to .6 and I was around a lot of sick people. It never goes that low anymore so this is usually a temporary thing and means you are responding well to Gleevec. I don't see how going on Sprycel would be a solution--I'm sure that drug would knock your anc just as low if not lower. I just felt I should let you know how one cml expert handled this situation. He felt it more important to get into remission than to keep the anc above 1. Maybe a doctor who has seen many many cml patients can be more comfortable breaking the rules. Best wishes, Dorothy On Jun 18, 2008, at 9:19 AM, Eva wrote: > > > From: Eva > Sent: Monday, June 16, 2008 10:42 PM > KTTWEETY@... > Subject: Re: ANC ! ! ! > > Hi , I am 52 yrs old. My doc told me than my Neutrophils were 0.9 , > told me to stop taking Gleevec and that I was to come back in one > week and if my levels weren't better than I would probably have to > go on Sprycel. I was alarmed. She was so matter of fact . My husband > was with me for the first time and he was mad , there was no > discussing any other options she just kept on saying , " I don't think > so " We asked if I could just take half of my Gleevec and she said > No , I don't think so . I was doing really well. I wasn't have any > side effects anymore and I was starting to feel like myself again. I > was finally feeling relaxed and was not feeling like I was going to > die anymore. I go back this Wednesday we will see what she says. > Thanks for your input. Eva > > LKCS 2.8 > HGB 123 > HCT 0.355 > > MCV 105.0 > Neutrophils 0.9 > Lymphocytes 1.5 > Monocytes 0.3 > Eosinophils 0.09 > Basophils 0.01 > LD 681 > > From: IAintFinishedYet > Sent: Monday, June 16, 2008 5:32 PM > Eva > Subject: ANC ! ! ! > > Hey Sister Survivor. . . > I don't know your age off-hand, however; I do know that I had very > low ANC counts after diagnosis. So low, that when my daughter took > me to a hospital in another county, my boy~~Doctor; wanting access > to the hospital; told me to be admitted or I would die if I didn't > let them admit me from the low ANC count. > The fact that it was over 40+ miles away; I left against medical > advise and went to my hospital. I ended up firing this doctor for > not giving my pain medication to me while he was oncall for 2 days. > Stating that my pain wasn't caused by my Cancer and he wasn't giving > me narcotics. > Back to the subject, I didn't have a 2nd or 3rd generation > medication to take then and I am now in my 5th year as a Survivor. I > know that middle-age survivors with other Chronic health issues, > like myself; aren't doing very well on Sprycel, etc. for longevity, > our gold~~Gleevec is the medication for us. Sprycel causes Pleural > Effusion, Heart issues, etc., It is for patients who fail or become > intolerant to our Gold. . .not as an either/or medication. Though > some Physicians are prescribing it initially. Please get all > information before you switch, because some Survivors haven't been > able to go back to Gleevec after being on Sprycel., and are having > Lung & Heart issues. I am not saying this to alarm you, I want you > to educate yourself, before proceeding to Sprycel. A low ANC count > doesn't mean you have failed Gleevec therapy . . . I was hospitalied > 3xs with low ANC after diagnosis . . . > I AM A SURVIVOR. . .I AIN'T FINISHED YET ! ! ! > Remember also, that the H/O~~Hematologists/Oncologists are learning > about our disease through us, we are the 1st Survivors~~Pioneers of > our disease. We cannot let them make Guinea Pigs out of us. . .we > must remain informed and educated Pioneers/Warriors for future > Survivors. They look at each of us as a Statistic. . .I consider > each of us an Individual and we must be active, informed, and > educated in our treatment for our Survival. I personally don't want > to lose another Brother or Sister Survivor who has let his/her > Doctor use as a Guinea Pig without knowing ALL the pros and cons. I > have seen enough of that since my diagnosis in 2003 and the morbid > mortality I was given at that time. > This is FYI~~my 2 cents only. I am not Doctor, never portrayed one > on TV, nor do I aspire to be a Physician in another life. > Take care, I have you in my prayers. . . " K " > > " K " > " I AIN'T FINISHED YET " !!! > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 18, 2008 Report Share Posted June 18, 2008 Hello Eva, Name here is Skip, I would not worry about taking a break from Gleevec, I am on Dasatnib right now, my ANC is around .6 give or take a few. I have been down to 3and half and never came off any drugs, ANC that is low mans you may be at risk for infections, but if you wash hands and keep a three foot space around you at all time the risk at .9 is low. I would do as Barb suggested and get another opinion from say Dr. Druker. At this time I have been on 5 different drugs for CML and never did I come off any of them for low ANC or for that matter low platlets or Hgb.. but Barbe gave good advice.. SkipD DX'ed 30++++ years ago From: Eva <evaob365@...> Subject: [ ] Fw: ANC ! ! ! Date: Wednesday, June 18, 2008, 10:19 AM From: Eva Sent: Monday, June 16, 2008 10:42 PM KTTWEETYsbcglobal (DOT) net Subject: Re: ANC ! ! ! Hi , I am 52 yrs old. My doc told me than my Neutrophils were 0.9 , told me to stop taking Gleevec and that I was to come back in one week and if my levels weren't better than I would probably have to go on Sprycel. I was alarmed. She was so matter of fact . My husband was with me for the first time and he was mad , there was no discussing any other options she just kept on saying , " I don't think so " We asked if I could just take half of my Gleevec and she said No , I don't think so . I was doing really well. I wasn't have any side effects anymore and I was starting to feel like myself again. I was finally feeling relaxed and was not feeling like I was going to die anymore. I go back this Wednesday we will see what she says. Thanks for your input. Eva LKCS 2.8 HGB 123 HCT 0.355 MCV 105.0 Neutrophils 0.9 Lymphocytes 1.5 Monocytes 0.3 Eosinophils 0.09 Basophils 0.01 LD 681 From: IAintFinishedYet Sent: Monday, June 16, 2008 5:32 PM Eva Subject: ANC ! ! ! Hey Sister Survivor. . . I don't know your age off-hand, however; I do know that I had very low ANC counts after diagnosis. So low, that when my daughter took me to a hospital in another county, my boy~~Doctor; wanting access to the hospital; told me to be admitted or I would die if I didn't let them admit me from the low ANC count. The fact that it was over 40+ miles away; I left against medical advise and went to my hospital. I ended up firing this doctor for not giving my pain medication to me while he was oncall for 2 days. Stating that my pain wasn't caused by my Cancer and he wasn't giving me narcotics. Back to the subject, I didn't have a 2nd or 3rd generation medication to take then and I am now in my 5th year as a Survivor. I know that middle-age survivors with other Chronic health issues, like myself; aren't doing very well on Sprycel, etc. for longevity, our gold~~Gleevec is the medication for us. Sprycel causes Pleural Effusion, Heart issues, etc., It is for patients who fail or become intolerant to our Gold. . .not as an either/or medication. Though some Physicians are prescribing it initially. Please get all information before you switch, because some Survivors haven't been able to go back to Gleevec after being on Sprycel., and are having Lung & Heart issues. I am not saying this to alarm you, I want you to educate yourself, before proceeding to Sprycel. A low ANC count doesn't mean you have failed Gleevec therapy . . . I was hospitalied 3xs with low ANC after diagnosis . . . I AM A SURVIVOR. . .I AIN'T FINISHED YET ! ! ! Remember also, that the H/O~~Hematologists/ Oncologists are learning about our disease through us, we are the 1st Survivors~~Pioneers of our disease. We cannot let them make Guinea Pigs out of us. . .we must remain informed and educated Pioneers/Warriors for future Survivors. They look at each of us as a Statistic. .. .I consider each of us an Individual and we must be active, informed, and educated in our treatment for our Survival. I personally don't want to lose another Brother or Sister Survivor who has let his/her Doctor use as a Guinea Pig without knowing ALL the pros and cons. I have seen enough of that since my diagnosis in 2003 and the morbid mortality I was given at that time. This is FYI~~my 2 cents only. I am not Doctor, never portrayed one on TV, nor do I aspire to be a Physician in another life. Take care, I have you in my prayers. . . " K " " K " " I AIN'T FINISHED YET " !!! Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 18, 2008 Report Share Posted June 18, 2008 On Wed, Jun 18, 2008 at 12:09 PM, Tracey <traceyincanada@...> wrote: > > Hi Eva and Marcos, > > The white count consists of the total number of white cells in the > differential (neutrophils, lymphocytes, monocytes, eosinophils and > basophils) all added together. So given the differential numbers > listed below, they add up to 2.8 which is consistent with the 2.8 > listed as the WBC. In this case, the differential is listed in > absolute numbers (as opposed to percentages which I think is what > threw you off Marcos?). Yeah, mines are given in % (Kaiser, Hosp. Saint Louis in Paris, and Stanford). I second Tracey and Tim, thanks for clarifying things for my fogged brain, I should have looked at the sum and made the connection to the WBC number (gleevec's not to blame, just a week end of diving). By the way when I started to be in remission my first dr asked me to get to 200mg/day, what I did for a couple of weeks until I start reading more and being more critical. I changed dr and got back to 400. Marcos. > > Since the ANC here is already calculated by the lab (0.9) there's no > need to do any further calculations but on some lab reports, they > only list the neutrophil percentage so you need to do the math to > figure out what the absolute count is. The formula is WBC x > Neutrophil percentage = ANC > > Ideally, they want to see your ANC above 1.0 so 0.9 is barely below > that. Most doctors are much more willing to see the ANC drop > slightly below that though, more so than they were in previous years > because they realize that low counts are pretty much to be expected > in the early days of treatment and it doesn't pose as much of a risk > as they once feared. > > I don't see how Sprycel would be any different in terms of inducing > neutropenia (low ANC) so I'm not sure why that option is even being > discussed at this early point. > > Incidentally, it is far better to interrupt treatment and wait for > counts to recover than to reduce the dosage because there is a chance > that you could induce resistance if a sub-optimal dose is given so > don't worry about taking a Gleevec break Eva, this is the standard > way of treating low counts. > > Tracey > > > > > > > > > > > > > From: Eva > > > Sent: Monday, June 16, 2008 10:42 PM > > > KTTWEETY@... <KTTWEETY%40sbcglobal.net> > > > Subject: Re: ANC ! ! ! > > > > > > Hi , I am 52 yrs old. My doc told me than my Neutrophils were > 0.9 , told me > > > to stop taking Gleevec and that I was to come back in one week > and if my > > > levels weren't better than I would probably have to go on > Sprycel. I was > > > alarmed. She was so matter of fact . My husband was with me for > the first > > > time and he was mad , there was no discussing any other options > she just > > > kept on saying , " I don't think so " We asked if I could just take > half of my > > > Gleevec and she said No , I don't think so . I was doing really > well. I > > > wasn't have any side effects anymore and I was starting to feel > like myself > > > again. I was finally feeling relaxed and was not feeling like I > was going to > > > die anymore. I go back this Wednesday we will see what she says. > Thanks for > > > your input. Eva > > > > > > LKCS 2.8 > > > HGB 123 > > > HCT 0.355 > > > > > > MCV 105.0 > > > Neutrophils 0.9 > > > Lymphocytes 1.5 > > > Monocytes 0.3 > > > Eosinophils 0.09 > > > Basophils 0.01 > > > LD 681 > > > > > > From: IAintFinishedYet > > > Sent: Monday, June 16, 2008 5:32 PM > > > Eva > > > Subject: ANC ! ! ! > > > > > > Hey Sister Survivor. . . > > > I don't know your age off-hand, however; I do know that I had > very low ANC > > > counts after diagnosis. So low, that when my daughter took me to > a hospital > > > in another county, my boy~~Doctor; wanting access to the > hospital; told me > > > to be admitted or I would die if I didn't let them admit me from > the low ANC > > > count. > > > The fact that it was over 40+ miles away; I left against medical > advise and > > > went to my hospital. I ended up firing this doctor for not giving > my pain > > > medication to me while he was oncall for 2 days. Stating that my > pain wasn't > > > caused by my Cancer and he wasn't giving me narcotics. > > > Back to the subject, I didn't have a 2nd or 3rd generation > medication to > > > take then and I am now in my 5th year as a Survivor. I know that > middle-age > > > survivors with other Chronic health issues, like myself; aren't > doing very > > > well on Sprycel, etc. for longevity, our gold~~Gleevec is the > medication for > > > us. Sprycel causes Pleural Effusion, Heart issues, etc., It is > for patients > > > who fail or become intolerant to our Gold. . .not as an either/or > > > medication. Though some Physicians are prescribing it initially. > Please get > > > all information before you switch, because some Survivors haven't > been able > > > to go back to Gleevec after being on Sprycel., and are having > Lung & Heart > > > issues. I am not saying this to alarm you, I want you to educate > yourself, > > > before proceeding to Sprycel. A low ANC count doesn't mean you > have failed > > > Gleevec therapy . . . I was hospitalied 3xs with low ANC after > diagnosis . . > > > . > > > I AM A SURVIVOR. . .I AIN'T FINISHED YET ! ! ! > > > Remember also, that the H/O~~Hematologists/Oncologists are > learning about > > > our disease through us, we are the 1st Survivors~~Pioneers of our > disease. > > > We cannot let them make Guinea Pigs out of us. . .we must remain > informed > > > and educated Pioneers/Warriors for future Survivors. They look at > each of us > > > as a Statistic. . .I consider each of us an Individual and we > must be > > > active, informed, and educated in our treatment for our Survival. > I > > > personally don't want to lose another Brother or Sister Survivor > who has let > > > his/her Doctor use as a Guinea Pig without knowing ALL the pros > and cons. I > > > have seen enough of that since my diagnosis in 2003 and the > morbid mortality > > > I was given at that time. > > > This is FYI~~my 2 cents only. I am not Doctor, never portrayed > one on TV, > > > nor do I aspire to be a Physician in another life. > > > Take care, I have you in my prayers. . . " K " > > > > > > " K " > > > " I AIN'T FINISHED YET " !!! > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 18, 2008 Report Share Posted June 18, 2008 Thanks everyone . Just got home and my onc says I should not take the Gleevec for another week . My stats are: LKCS 3.4 HGB 128 HCT 0.371 MCV 105.0 Neutrophils 1.1 Lymphocytes 1.7 Monocytes 0.5 Eosinophils 0.11 Basophils 0.01 LD 668 She says that if my Neutrophils do not come up more and she believes they will then I will have to go and see the head guy at Princess Margaret hospital in Toronto , I cant remember his name and he will help decide what the next step would be, Maybe Sprycel. She did alleviate some of my fears...not as many as you guys but I do feel better now . Thank you so much . Eva From: Skip Duffie Sent: Wednesday, June 18, 2008 4:31 PM Subject: Re: [ ] Fw: ANC ! ! ! Hello Eva, Name here is Skip, I would not worry about taking a break from Gleevec, I am on Dasatnib right now, my ANC is around .6 give or take a few. I have been down to 3and half and never came off any drugs, ANC that is low mans you may be at risk for infections, but if you wash hands and keep a three foot space around you at all time the risk at .9 is low. I would do as Barb suggested and get another opinion from say Dr. Druker. At this time I have been on 5 different drugs for CML and never did I come off any of them for low ANC or for that matter low platlets or Hgb.. but Barbe gave good advice.. SkipD DX'ed 30++++ years ago From: Eva <evaob365@...> Subject: [ ] Fw: ANC ! ! ! Date: Wednesday, June 18, 2008, 10:19 AM From: Eva Sent: Monday, June 16, 2008 10:42 PM KTTWEETYsbcglobal (DOT) net Subject: Re: ANC ! ! ! Hi , I am 52 yrs old. My doc told me than my Neutrophils were 0.9 , told me to stop taking Gleevec and that I was to come back in one week and if my levels weren't better than I would probably have to go on Sprycel. I was alarmed. She was so matter of fact . My husband was with me for the first time and he was mad , there was no discussing any other options she just kept on saying , " I don't think so " We asked if I could just take half of my Gleevec and she said No , I don't think so . I was doing really well. I wasn't have any side effects anymore and I was starting to feel like myself again. I was finally feeling relaxed and was not feeling like I was going to die anymore. I go back this Wednesday we will see what she says. Thanks for your input. Eva LKCS 2.8 HGB 123 HCT 0.355 MCV 105.0 Neutrophils 0.9 Lymphocytes 1.5 Monocytes 0.3 Eosinophils 0.09 Basophils 0.01 LD 681 From: IAintFinishedYet Sent: Monday, June 16, 2008 5:32 PM Eva Subject: ANC ! ! ! Hey Sister Survivor. . . I don't know your age off-hand, however; I do know that I had very low ANC counts after diagnosis. So low, that when my daughter took me to a hospital in another county, my boy~~Doctor; wanting access to the hospital; told me to be admitted or I would die if I didn't let them admit me from the low ANC count. The fact that it was over 40+ miles away; I left against medical advise and went to my hospital. I ended up firing this doctor for not giving my pain medication to me while he was oncall for 2 days. Stating that my pain wasn't caused by my Cancer and he wasn't giving me narcotics. Back to the subject, I didn't have a 2nd or 3rd generation medication to take then and I am now in my 5th year as a Survivor. I know that middle-age survivors with other Chronic health issues, like myself; aren't doing very well on Sprycel, etc. for longevity, our gold~~Gleevec is the medication for us. Sprycel causes Pleural Effusion, Heart issues, etc., It is for patients who fail or become intolerant to our Gold. . .not as an either/or medication. Though some Physicians are prescribing it initially. Please get all information before you switch, because some Survivors haven't been able to go back to Gleevec after being on Sprycel., and are having Lung & Heart issues. I am not saying this to alarm you, I want you to educate yourself, before proceeding to Sprycel. A low ANC count doesn't mean you have failed Gleevec therapy . . . I was hospitalied 3xs with low ANC after diagnosis . . . I AM A SURVIVOR. . .I AIN'T FINISHED YET ! ! ! Remember also, that the H/O~~Hematologists/ Oncologists are learning about our disease through us, we are the 1st Survivors~~Pioneers of our disease. We cannot let them make Guinea Pigs out of us. . .we must remain informed and educated Pioneers/Warriors for future Survivors. They look at each of us as a Statistic. .. .I consider each of us an Individual and we must be active, informed, and educated in our treatment for our Survival. I personally don't want to lose another Brother or Sister Survivor who has let his/her Doctor use as a Guinea Pig without knowing ALL the pros and cons. I have seen enough of that since my diagnosis in 2003 and the morbid mortality I was given at that time. This is FYI~~my 2 cents only. I am not Doctor, never portrayed one on TV, nor do I aspire to be a Physician in another life. Take care, I have you in my prayers. . . " K " " K " " I AIN'T FINISHED YET " !!! Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 18, 2008 Report Share Posted June 18, 2008 Thankyou Dorothy , I am going to print these responses and take them to her. Take care; Eva From: Dorothy Emery Sent: Wednesday, June 18, 2008 4:24 PM Subject: Re: [ ] Fw: ANC ! ! ! Hi Eva, I just want to let you know how Dr. Kantarjian of MD handled this situation with me many years ago when I started Gleevec. I too quickly became neutropenic with an anc of .9. I was on a trial so all my labs were being sent to MDACC. When they got the result of .9 they called me and told me I would need to stop the drug. I did that but just a couple days later I went to Houston for my checkup with Dr. K. My anc was still low. He told me that since I was in an extended Phase II trial I was not critical to the statistics and he said-- " go back on the drug and don't get a cbc for 6 week--that way you won't have to go off the drug and you will do better in the long run. " He was sure my anc would recover and he was right. You can't make progress when you're not on treatment. I never took another break from Gleevec. I also didn't get sick even though at one point my anc did go to .6 and I was around a lot of sick people. It never goes that low anymore so this is usually a temporary thing and means you are responding well to Gleevec. I don't see how going on Sprycel would be a solution--I'm sure that drug would knock your anc just as low if not lower. I just felt I should let you know how one cml expert handled this situation. He felt it more important to get into remission than to keep the anc above 1. Maybe a doctor who has seen many many cml patients can be more comfortable breaking the rules. Best wishes, Dorothy On Jun 18, 2008, at 9:19 AM, Eva wrote: > > > From: Eva > Sent: Monday, June 16, 2008 10:42 PM > KTTWEETY@... > Subject: Re: ANC ! ! ! > > Hi , I am 52 yrs old. My doc told me than my Neutrophils were 0.9 , > told me to stop taking Gleevec and that I was to come back in one > week and if my levels weren't better than I would probably have to > go on Sprycel. I was alarmed. She was so matter of fact . My husband > was with me for the first time and he was mad , there was no > discussing any other options she just kept on saying , " I don't think > so " We asked if I could just take half of my Gleevec and she said > No , I don't think so . I was doing really well. I wasn't have any > side effects anymore and I was starting to feel like myself again. I > was finally feeling relaxed and was not feeling like I was going to > die anymore. I go back this Wednesday we will see what she says. > Thanks for your input. Eva > > LKCS 2.8 > HGB 123 > HCT 0.355 > > MCV 105.0 > Neutrophils 0.9 > Lymphocytes 1.5 > Monocytes 0.3 > Eosinophils 0.09 > Basophils 0.01 > LD 681 > > From: IAintFinishedYet > Sent: Monday, June 16, 2008 5:32 PM > Eva > Subject: ANC ! ! ! > > Hey Sister Survivor. . . > I don't know your age off-hand, however; I do know that I had very > low ANC counts after diagnosis. So low, that when my daughter took > me to a hospital in another county, my boy~~Doctor; wanting access > to the hospital; told me to be admitted or I would die if I didn't > let them admit me from the low ANC count. > The fact that it was over 40+ miles away; I left against medical > advise and went to my hospital. I ended up firing this doctor for > not giving my pain medication to me while he was oncall for 2 days. > Stating that my pain wasn't caused by my Cancer and he wasn't giving > me narcotics. > Back to the subject, I didn't have a 2nd or 3rd generation > medication to take then and I am now in my 5th year as a Survivor. I > know that middle-age survivors with other Chronic health issues, > like myself; aren't doing very well on Sprycel, etc. for longevity, > our gold~~Gleevec is the medication for us. Sprycel causes Pleural > Effusion, Heart issues, etc., It is for patients who fail or become > intolerant to our Gold. . .not as an either/or medication. Though > some Physicians are prescribing it initially. Please get all > information before you switch, because some Survivors haven't been > able to go back to Gleevec after being on Sprycel., and are having > Lung & Heart issues. I am not saying this to alarm you, I want you > to educate yourself, before proceeding to Sprycel. A low ANC count > doesn't mean you have failed Gleevec therapy . . . I was hospitalied > 3xs with low ANC after diagnosis . . . > I AM A SURVIVOR. . .I AIN'T FINISHED YET ! ! ! > Remember also, that the H/O~~Hematologists/Oncologists are learning > about our disease through us, we are the 1st Survivors~~Pioneers of > our disease. We cannot let them make Guinea Pigs out of us. . .we > must remain informed and educated Pioneers/Warriors for future > Survivors. They look at each of us as a Statistic. . .I consider > each of us an Individual and we must be active, informed, and > educated in our treatment for our Survival. I personally don't want > to lose another Brother or Sister Survivor who has let his/her > Doctor use as a Guinea Pig without knowing ALL the pros and cons. I > have seen enough of that since my diagnosis in 2003 and the morbid > mortality I was given at that time. > This is FYI~~my 2 cents only. I am not Doctor, never portrayed one > on TV, nor do I aspire to be a Physician in another life. > Take care, I have you in my prayers. . . " K " > > " K " > " I AIN'T FINISHED YET " !!! > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 19, 2008 Report Share Posted June 19, 2008 Hi Everyone, Speaking of ANC - well, I've had another interesting day, starting with labs, and my anc is 0.8. I have been feeling real crappy for several days, thought it was starting a new eating program, thought it could be high potassium, as I am taking one every day now for a week, thought I was coming down with something. So I called my trial nurse, and given the way I felt, and the two dizzy spells I had yesterday, she said to go to emergency. This is a new drug and they worry about the effect on the heart, and my pulse has been from 98 to 117. So, off I went, they took me right in, did an EKG, labs, chest Xray and a Cat Scan.....because they do this when someone complains of being dizzy. I did explain I think I was dizzy because I had forgotten my mid morning snack, and was on a new eating program, that snack is necessary, and I had waited to long for lunch. but they said dizzy can mean a brain problem, so the end result was, are you ready for this? I am dehydrated - stay overnight and be hydrated, or go home and drink lots of water. SO I figure that cost about $5,000.00, to be told to drink more water. Also, because the ANC is low, I cannot be infused so do not have to go to Ann Arbor tomorrow. Study nurse also said NO to the Angioplasty I am scheduled for this coming Monday. Also I have to follow up with my doctor tomorrow. This is my first experience with low ANC, but also my HGB is only 9.8, wbc is 1.9, pltl258. So all in all, guess that's why I am dog tired? This dog needs a bone to nibble on, time for dinner. Everyone have a good night, love, Bobby ps Eva, should we start a low ANC club? tee hee Eva <evaob365@...> wrote: Thankyou Dorothy , I am going to print these responses and take them to her. Take care; Eva From: Dorothy Emery Sent: Wednesday, June 18, 2008 4:24 PM Subject: Re: [ ] Fw: ANC ! ! ! Hi Eva, I just want to let you know how Dr. Kantarjian of MD handled this situation with me many years ago when I started Gleevec. I too quickly became neutropenic with an anc of .9. I was on a trial so all my labs were being sent to MDACC. When they got the result of .9 they called me and told me I would need to stop the drug. I did that but just a couple days later I went to Houston for my checkup with Dr. K. My anc was still low. He told me that since I was in an extended Phase II trial I was not critical to the statistics and he said-- " go back on the drug and don't get a cbc for 6 week--that way you won't have to go off the drug and you will do better in the long run. " He was sure my anc would recover and he was right. You can't make progress when you're not on treatment. I never took another break from Gleevec. I also didn't get sick even though at one point my anc did go to .6 and I was around a lot of sick people. It never goes that low anymore so this is usually a temporary thing and means you are responding well to Gleevec. I don't see how going on Sprycel would be a solution--I'm sure that drug would knock your anc just as low if not lower. I just felt I should let you know how one cml expert handled this situation. He felt it more important to get into remission than to keep the anc above 1. Maybe a doctor who has seen many many cml patients can be more comfortable breaking the rules. Best wishes, Dorothy On Jun 18, 2008, at 9:19 AM, Eva wrote: > > > From: Eva > Sent: Monday, June 16, 2008 10:42 PM > KTTWEETY@... > Subject: Re: ANC ! ! ! > > Hi , I am 52 yrs old. My doc told me than my Neutrophils were 0.9 , > told me to stop taking Gleevec and that I was to come back in one > week and if my levels weren't better than I would probably have to > go on Sprycel. I was alarmed. She was so matter of fact . My husband > was with me for the first time and he was mad , there was no > discussing any other options she just kept on saying , " I don't think > so " We asked if I could just take half of my Gleevec and she said > No , I don't think so . I was doing really well. I wasn't have any > side effects anymore and I was starting to feel like myself again. I > was finally feeling relaxed and was not feeling like I was going to > die anymore. I go back this Wednesday we will see what she says. > Thanks for your input. Eva > > LKCS 2.8 > HGB 123 > HCT 0.355 > > MCV 105.0 > Neutrophils 0.9 > Lymphocytes 1.5 > Monocytes 0.3 > Eosinophils 0.09 > Basophils 0.01 > LD 681 > > From: IAintFinishedYet > Sent: Monday, June 16, 2008 5:32 PM > Eva > Subject: ANC ! ! ! > > Hey Sister Survivor. . . > I don't know your age off-hand, however; I do know that I had very > low ANC counts after diagnosis. So low, that when my daughter took > me to a hospital in another county, my boy~~Doctor; wanting access > to the hospital; told me to be admitted or I would die if I didn't > let them admit me from the low ANC count. > The fact that it was over 40+ miles away; I left against medical > advise and went to my hospital. I ended up firing this doctor for > not giving my pain medication to me while he was oncall for 2 days. > Stating that my pain wasn't caused by my Cancer and he wasn't giving > me narcotics. > Back to the subject, I didn't have a 2nd or 3rd generation > medication to take then and I am now in my 5th year as a Survivor. I > know that middle-age survivors with other Chronic health issues, > like myself; aren't doing very well on Sprycel, etc. for longevity, > our gold~~Gleevec is the medication for us. Sprycel causes Pleural > Effusion, Heart issues, etc., It is for patients who fail or become > intolerant to our Gold. . .not as an either/or medication. Though > some Physicians are prescribing it initially. Please get all > information before you switch, because some Survivors haven't been > able to go back to Gleevec after being on Sprycel., and are having > Lung & Heart issues. I am not saying this to alarm you, I want you > to educate yourself, before proceeding to Sprycel. A low ANC count > doesn't mean you have failed Gleevec therapy . . . I was hospitalied > 3xs with low ANC after diagnosis . . . > I AM A SURVIVOR. . .I AIN'T FINISHED YET ! ! ! > Remember also, that the H/O~~Hematologists/Oncologists are learning > about our disease through us, we are the 1st Survivors~~Pioneers of > our disease. We cannot let them make Guinea Pigs out of us. . .we > must remain informed and educated Pioneers/Warriors for future > Survivors. They look at each of us as a Statistic. . .I consider > each of us an Individual and we must be active, informed, and > educated in our treatment for our Survival. I personally don't want > to lose another Brother or Sister Survivor who has let his/her > Doctor use as a Guinea Pig without knowing ALL the pros and cons. I > have seen enough of that since my diagnosis in 2003 and the morbid > mortality I was given at that time. > This is FYI~~my 2 cents only. I am not Doctor, never portrayed one > on TV, nor do I aspire to be a Physician in another life. > Take care, I have you in my prayers. . . " K " > > " K " > " I AIN'T FINISHED YET " !!! > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 19, 2008 Report Share Posted June 19, 2008 Hello again! this Dante .. Thanks you for checking up my result!.. have a wonderful day! From: Tracey <traceyincanada@...> Subject: Re: [ ] Fw: ANC ! ! ! Date: Wednesday, June 18, 2008, 1:00 PM Hi Dante, You have absolultely perfect counts. Looking at these counts, no one would know you ever had CML so please don't worry about anything, everything here is fine. Tracey > > > > Hi Eva, > > Are these numbers your test results ? I thought the differential > numbers : > > Neutrophils 0.9 > > Lymphocytes 1.5 > > Monocytes 0.3 > > Eosinophils 0.09 > > Basophils 0.01 > > > > should sum to 1 (or close), are you sure you typed it right ? I am > guessing > > the 1.5 is 0.15, but still it doesn't add up to 1. From what I am > reading > > you white cell count is 2.8 and the Neutrophils 90%, that's more > Absolute > > Neutrophil Count (ANC) than what I have ! It is way above 1, it's > 2.9*0.9 = > > 2.52. My other guess is that you Neutrophils are around 45% (0.45) > and then > > the ANC is about 1.3. Tracey, can you take a look at these numbers ? > > Marcos. > > > > Eva. > > Marcos is on the right track. This is from the automated lab report > combining the frequency of the cells (a %) with the total white blood > cell count. > > Your WBC is 2.8 (x10e3/ul) or 2,800 WBC per microliter of blood. > Normal range is 5-11 (5,000 - 11,000). The key number is the ANC > (Absolute Neutrophil Count) is 0.9 which equals 900 per microliter. > Any number below 1000 calls for holding the drug. The ANC should > start to rise and the drug can be restarted at a later date. > > Available options are hold Gleevec until the ANC count rises. The > drug can be restarted at a later date at the orignal dose or even a > lower one. Another option is to switch to the second generation > drugs like Sprycel or Tasigna. However, there is a chance that the > ANC may drop again with any of these options. > > I have noted that low ANC or platelets can be often managed by > holding and restarting drug (even several times) until the marrow > begins to convert to producing normal cells. > > > > > > > > > > > > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 19, 2008 Report Share Posted June 19, 2008 Hi Eva, I think it would be very good for you to see Dr. Lipton at Princess Margaret. It sounds like your current doctor is not at all experienced with Gleevec. Tracey Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 19, 2008 Report Share Posted June 19, 2008 Dr. Lipton, Thank you , I couldn't remember his name!! Eva From: Tracey Sent: Wednesday, June 18, 2008 9:31 PM Subject: Re: [ ] Fw: ANC ! ! ! Hi Eva, I think it would be very good for you to see Dr. Lipton at Princess Margaret. It sounds like your current doctor is not at all experienced with Gleevec. Tracey Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 19, 2008 Report Share Posted June 19, 2008 Hey Bobby , we could start a new club but I didn't know I wanted to belong to this one. LOL I am glad I do now but maybe we could some how start a wave of good blood results and everyone could jump on and ride the wave to good health. That is my wish for every one. You are in my prayers. Take care ; Eva From: ROBERTA DOYLE Sent: Wednesday, June 18, 2008 7:32 PM Subject: Re: [ ] Fw: ANC ! ! ! Hi Everyone, Speaking of ANC - well, I've had another interesting day, starting with labs, and my anc is 0.8. I have been feeling real crappy for several days, thought it was starting a new eating program, thought it could be high potassium, as I am taking one every day now for a week, thought I was coming down with something. So I called my trial nurse, and given the way I felt, and the two dizzy spells I had yesterday, she said to go to emergency. This is a new drug and they worry about the effect on the heart, and my pulse has been from 98 to 117. So, off I went, they took me right in, did an EKG, labs, chest Xray and a Cat Scan.....because they do this when someone complains of being dizzy. I did explain I think I was dizzy because I had forgotten my mid morning snack, and was on a new eating program, that snack is necessary, and I had waited to long for lunch. but they said dizzy can mean a brain problem, so the end result was, are you ready for this? I am dehydrated - stay overnight and be hydrated, or go home and drink lots of water. SO I figure that cost about $5,000.00, to be told to drink more water. Also, because the ANC is low, I cannot be infused so do not have to go to Ann Arbor tomorrow. Study nurse also said NO to the Angioplasty I am scheduled for this coming Monday. Also I have to follow up with my doctor tomorrow. This is my first experience with low ANC, but also my HGB is only 9.8, wbc is 1.9, pltl258. So all in all, guess that's why I am dog tired? This dog needs a bone to nibble on, time for dinner. Everyone have a good night, love, Bobby ps Eva, should we start a low ANC club? tee hee Eva <evaob365@...> wrote: Thankyou Dorothy , I am going to print these responses and take them to her. Take care; Eva From: Dorothy Emery Sent: Wednesday, June 18, 2008 4:24 PM Subject: Re: [ ] Fw: ANC ! ! ! Hi Eva, I just want to let you know how Dr. Kantarjian of MD handled this situation with me many years ago when I started Gleevec. I too quickly became neutropenic with an anc of .9. I was on a trial so all my labs were being sent to MDACC. When they got the result of .9 they called me and told me I would need to stop the drug. I did that but just a couple days later I went to Houston for my checkup with Dr. K. My anc was still low. He told me that since I was in an extended Phase II trial I was not critical to the statistics and he said-- " go back on the drug and don't get a cbc for 6 week--that way you won't have to go off the drug and you will do better in the long run. " He was sure my anc would recover and he was right. You can't make progress when you're not on treatment. I never took another break from Gleevec. I also didn't get sick even though at one point my anc did go to .6 and I was around a lot of sick people. It never goes that low anymore so this is usually a temporary thing and means you are responding well to Gleevec. I don't see how going on Sprycel would be a solution--I'm sure that drug would knock your anc just as low if not lower. I just felt I should let you know how one cml expert handled this situation. He felt it more important to get into remission than to keep the anc above 1. Maybe a doctor who has seen many many cml patients can be more comfortable breaking the rules. Best wishes, Dorothy On Jun 18, 2008, at 9:19 AM, Eva wrote: > > > From: Eva > Sent: Monday, June 16, 2008 10:42 PM > KTTWEETY@... > Subject: Re: ANC ! ! ! > > Hi , I am 52 yrs old. My doc told me than my Neutrophils were 0.9 , > told me to stop taking Gleevec and that I was to come back in one > week and if my levels weren't better than I would probably have to > go on Sprycel. I was alarmed. She was so matter of fact . My husband > was with me for the first time and he was mad , there was no > discussing any other options she just kept on saying , " I don't think > so " We asked if I could just take half of my Gleevec and she said > No , I don't think so . I was doing really well. I wasn't have any > side effects anymore and I was starting to feel like myself again. I > was finally feeling relaxed and was not feeling like I was going to > die anymore. I go back this Wednesday we will see what she says. > Thanks for your input. Eva > > LKCS 2.8 > HGB 123 > HCT 0.355 > > MCV 105.0 > Neutrophils 0.9 > Lymphocytes 1.5 > Monocytes 0.3 > Eosinophils 0.09 > Basophils 0.01 > LD 681 > > From: IAintFinishedYet > Sent: Monday, June 16, 2008 5:32 PM > Eva > Subject: ANC ! ! ! > > Hey Sister Survivor. . . > I don't know your age off-hand, however; I do know that I had very > low ANC counts after diagnosis. So low, that when my daughter took > me to a hospital in another county, my boy~~Doctor; wanting access > to the hospital; told me to be admitted or I would die if I didn't > let them admit me from the low ANC count. > The fact that it was over 40+ miles away; I left against medical > advise and went to my hospital. I ended up firing this doctor for > not giving my pain medication to me while he was oncall for 2 days. > Stating that my pain wasn't caused by my Cancer and he wasn't giving > me narcotics. > Back to the subject, I didn't have a 2nd or 3rd generation > medication to take then and I am now in my 5th year as a Survivor. I > know that middle-age survivors with other Chronic health issues, > like myself; aren't doing very well on Sprycel, etc. for longevity, > our gold~~Gleevec is the medication for us. Sprycel causes Pleural > Effusion, Heart issues, etc., It is for patients who fail or become > intolerant to our Gold. . .not as an either/or medication. Though > some Physicians are prescribing it initially. Please get all > information before you switch, because some Survivors haven't been > able to go back to Gleevec after being on Sprycel., and are having > Lung & Heart issues. I am not saying this to alarm you, I want you > to educate yourself, before proceeding to Sprycel. A low ANC count > doesn't mean you have failed Gleevec therapy . . . I was hospitalied > 3xs with low ANC after diagnosis . . . > I AM A SURVIVOR. . .I AIN'T FINISHED YET ! ! ! > Remember also, that the H/O~~Hematologists/Oncologists are learning > about our disease through us, we are the 1st Survivors~~Pioneers of > our disease. We cannot let them make Guinea Pigs out of us. . .we > must remain informed and educated Pioneers/Warriors for future > Survivors. They look at each of us as a Statistic. . .I consider > each of us an Individual and we must be active, informed, and > educated in our treatment for our Survival. I personally don't want > to lose another Brother or Sister Survivor who has let his/her > Doctor use as a Guinea Pig without knowing ALL the pros and cons. I > have seen enough of that since my diagnosis in 2003 and the morbid > mortality I was given at that time. > This is FYI~~my 2 cents only. I am not Doctor, never portrayed one > on TV, nor do I aspire to be a Physician in another life. > Take care, I have you in my prayers. . . " K " > > " K " > " I AIN'T FINISHED YET " !!! > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 19, 2008 Report Share Posted June 19, 2008 Hi Eva Not sure if Dr. Sheridan is still at that hospital, if so I hope you see him. he was my first CML doc about 34 years ago.. he left here for there .. about 29 years ago.. I sure missed him .. good luck. SkipD dx'ed 34++++ From: Eva <evaob365hotmail (DOT) com> Subject: [ ] Fw: ANC ! ! ! groups (DOT) com Date: Wednesday, June 18, 2008, 10:19 AM From: Eva Sent: Monday, June 16, 2008 10:42 PM KTTWEETYsbcglobal (DOT) net Subject: Re: ANC ! ! ! Hi , I am 52 yrs old. My doc told me than my Neutrophils were 0.9 , told me to stop taking Gleevec and that I was to come back in one week and if my levels weren't better than I would probably have to go on Sprycel. I was alarmed. She was so matter of fact . My husband was with me for the first time and he was mad , there was no discussing any other options she just kept on saying , " I don't think so " We asked if I could just take half of my Gleevec and she said No , I don't think so . I was doing really well. I wasn't have any side effects anymore and I was starting to feel like myself again. I was finally feeling relaxed and was not feeling like I was going to die anymore. I go back this Wednesday we will see what she says. Thanks for your input. Eva LKCS 2.8 HGB 123 HCT 0.355 MCV 105.0 Neutrophils 0.9 Lymphocytes 1.5 Monocytes 0.3 Eosinophils 0.09 Basophils 0.01 LD 681 From: IAintFinishedYet Sent: Monday, June 16, 2008 5:32 PM Eva Subject: ANC ! ! ! Hey Sister Survivor. . . I don't know your age off-hand, however; I do know that I had very low ANC counts after diagnosis. So low, that when my daughter took me to a hospital in another county, my boy~~Doctor; wanting access to the hospital; told me to be admitted or I would die if I didn't let them admit me from the low ANC count. The fact that it was over 40+ miles away; I left against medical advise and went to my hospital. I ended up firing this doctor for not giving my pain medication to me while he was oncall for 2 days. Stating that my pain wasn't caused by my Cancer and he wasn't giving me narcotics. Back to the subject, I didn't have a 2nd or 3rd generation medication to take then and I am now in my 5th year as a Survivor. I know that middle-age survivors with other Chronic health issues, like myself; aren't doing very well on Sprycel, etc. for longevity, our gold~~Gleevec is the medication for us. Sprycel causes Pleural Effusion, Heart issues, etc., It is for patients who fail or become intolerant to our Gold. . .not as an either/or medication. Though some Physicians are prescribing it initially. Please get all information before you switch, because some Survivors haven't been able to go back to Gleevec after being on Sprycel., and are having Lung & Heart issues. I am not saying this to alarm you, I want you to educate yourself, before proceeding to Sprycel. A low ANC count doesn't mean you have failed Gleevec therapy . . . I was hospitalied 3xs with low ANC after diagnosis . . . I AM A SURVIVOR. . .I AIN'T FINISHED YET ! ! ! Remember also, that the H/O~~Hematologists/ Oncologists are learning about our disease through us, we are the 1st Survivors~~Pioneers of our disease. We cannot let them make Guinea Pigs out of us. . .we must remain informed and educated Pioneers/Warriors for future Survivors. They look at each of us as a Statistic. .. .I consider each of us an Individual and we must be active, informed, and educated in our treatment for our Survival. I personally don't want to lose another Brother or Sister Survivor who has let his/her Doctor use as a Guinea Pig without knowing ALL the pros and cons. I have seen enough of that since my diagnosis in 2003 and the morbid mortality I was given at that time. This is FYI~~my 2 cents only. I am not Doctor, never portrayed one on TV, nor do I aspire to be a Physician in another life. Take care, I have you in my prayers. . . " K " " K " " I AIN'T FINISHED YET " !!! Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 19, 2008 Report Share Posted June 19, 2008 Eva- As many have pointed out- our docs are learning unless you are a clinical trial doc- how many of us can they have as patients. There are probably less than 30,000 cmlers in the US. Maybe if you live in a densly populated area like LA or in a CML cancer cluster area but otherwise they will only have a few. Some may only have one cml patient. Luckily my guy reads the research. Before they say no to Gleevec just because of low numbers ask for a second opinion or email one of the specialists. MY ANC was low -the doc would look at the numbers look at me and then say- I don't know why you aren't in the hospital. But I have yet to have to be admitted. I think with this disease it can be life or death and so you have to be informed. Love and Healing Chi --- Tracey <traceyincanada@...> wrote: > Hi Eva and Marcos, > > The white count consists of the total number of > white cells in the > differential (neutrophils, lymphocytes, monocytes, > eosinophils and > basophils) all added together. So given the > differential numbers > listed below, they add up to 2.8 which is consistent > with the 2.8 > listed as the WBC. In this case, the differential > is listed in > absolute numbers (as opposed to percentages which I > think is what > threw you off Marcos?). > > Since the ANC here is already calculated by the lab > (0.9) there's no > need to do any further calculations but on some lab > reports, they > only list the neutrophil percentage so you need to > do the math to > figure out what the absolute count is. The formula > is WBC x > Neutrophil percentage = ANC > > Ideally, they want to see your ANC above 1.0 so 0.9 > is barely below > that. Most doctors are much more willing to see the > ANC drop > slightly below that though, more so than they were > in previous years > because they realize that low counts are pretty much > to be expected > in the early days of treatment and it doesn't pose > as much of a risk > as they once feared. > > I don't see how Sprycel would be any different in > terms of inducing > neutropenia (low ANC) so I'm not sure why that > option is even being > discussed at this early point. > > Incidentally, it is far better to interrupt > treatment and wait for > counts to recover than to reduce the dosage because > there is a chance > that you could induce resistance if a sub-optimal > dose is given so > don't worry about taking a Gleevec break Eva, this > is the standard > way of treating low counts. > > Tracey > > > > > > > > > > > > > > From: Eva > > > Sent: Monday, June 16, 2008 10:42 PM > > > KTTWEETY@... <KTTWEETY%40sbcglobal.net> > > > Subject: Re: ANC ! ! ! > > > > > > Hi , I am 52 yrs old. My doc told me than my > Neutrophils were > 0.9 , told me > > > to stop taking Gleevec and that I was to come > back in one week > and if my > > > levels weren't better than I would probably have > to go on > Sprycel. I was > > > alarmed. She was so matter of fact . My husband > was with me for > the first > > > time and he was mad , there was no discussing > any other options > she just > > > kept on saying , " I don't think so " We asked if I > could just take > half of my > > > Gleevec and she said No , I don't think so . I > was doing really > well. I > > > wasn't have any side effects anymore and I was > starting to feel > like myself > > > again. I was finally feeling relaxed and was not > feeling like I > was going to > > > die anymore. I go back this Wednesday we will > see what she says. > Thanks for > > > your input. Eva > > > > > > LKCS 2.8 > > > HGB 123 > > > HCT 0.355 > > > > > > MCV 105.0 > > > Neutrophils 0.9 > > > Lymphocytes 1.5 > > > Monocytes 0.3 > > > Eosinophils 0.09 > > > Basophils 0.01 > > > LD 681 > > > > > > From: IAintFinishedYet > > > Sent: Monday, June 16, 2008 5:32 PM > > > Eva > > > Subject: ANC ! ! ! > > > > > > Hey Sister Survivor. . . > > > I don't know your age off-hand, however; I do > know that I had > very low ANC > > > counts after diagnosis. So low, that when my > daughter took me to > a hospital > > > in another county, my boy~~Doctor; wanting > access to the > hospital; told me > > > to be admitted or I would die if I didn't let > them admit me from > the low ANC > > > count. > > > The fact that it was over 40+ miles away; I left > against medical > advise and > > > went to my hospital. I ended up firing this > doctor for not giving > my pain > > > medication to me while he was oncall for 2 days. > Stating that my > pain wasn't > > > caused by my Cancer and he wasn't giving me > narcotics. > > > Back to the subject, I didn't have a 2nd or 3rd > generation > medication to > > > take then and I am now in my 5th year as a > Survivor. I know that > middle-age > > > survivors with other Chronic health issues, like > myself; aren't > doing very > > > well on Sprycel, etc. for longevity, our > gold~~Gleevec is the > medication for > > > us. Sprycel causes Pleural Effusion, Heart > issues, etc., It is > for patients > > > who fail or become intolerant to our Gold. . > .not as an either/or > > > medication. Though some Physicians are > prescribing it initially. > Please get > > > all information before you switch, because some > Survivors === message truncated === Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 20, 2008 Report Share Posted June 20, 2008 Dante even if your counts would drop- my advice .....don't worry, fight. There are things they can do to bring up your numbers- shots, transfusions, medications etc. Stay strong , my fellow warrior. Love and Health Chi --- Dante Bacani <dantelb@...> wrote: > Hello im dante! just need to ask you guys qustion i > got similiar result like his.. can u find out if > mine is good or bad? heres the result: > WBC: 6.69Â Â RBC:4.99Â Hgb: 13.9*LÂ Hct: 41.1Â MCV: > 82.4Â MCH: 27.9*LÂ Â MCHC: 33.8Â RDW: 15.2*HÂ > Platelets: 185 MVP: 9.9Â Neut %: 56.4Â Lymph %: > 36.6Â Mono %: 5.7Â Eo %:1.2Â Baso %: 0.1Â Neut > #-ABS: 3.77Â Lymph #-ABS: 2.45Â Mono #-ABS: 0.38Â Â > Eo # -ABS:0.08Â Baso #-ABS: 0.01Â Please let me know > if should worry.. Thanks! > > > From: <timothyfarley16@...> > Subject: Re: [ ] Fw: ANC ! ! ! > > Date: Wednesday, June 18, 2008, 11:46 AM > > > > > > > > > > > Hi Eva, > > Are these numbers your test results ? I thought > the differential > numbers : > > Neutrophils 0.9 > > Lymphocytes 1.5 > > Monocytes 0.3 > > Eosinophils 0.09 > > Basophils 0.01 > > > > should sum to 1 (or close), are you sure you typed > it right ? I am > guessing > > the 1.5 is 0.15, but still it doesn't add up to 1. > From what I am > reading > > you white cell count is 2.8 and the Neutrophils > 90%, that's more > Absolute > > Neutrophil Count (ANC) than what I have ! It is > way above 1, it's > 2.9*0.9 = > > 2.52. My other guess is that you Neutrophils are > around 45% (0.45) > and then > > the ANC is about 1.3. Tracey, can you take a look > at these numbers ? > > Marcos. > > > > Eva. > > Marcos is on the right track. This is from the > automated lab report > combining the frequency of the cells (a %) with the > total white blood > cell count. > > Your WBC is 2.8 (x10e3/ul) or 2,800 WBC per > microliter of blood. > Normal range is 5-11 (5,000 - 11,000). The key > number is the ANC > (Absolute Neutrophil Count) is 0.9 which equals 900 > per microliter. > Any number below 1000 calls for holding the drug. > The ANC should > start to rise and the drug can be restarted at a > later date. > > Available options are hold Gleevec until the ANC > count rises. The > drug can be restarted at a later date at the orignal > dose or even a > lower one. Another option is to switch to the second > generation > drugs like Sprycel or Tasigna. However, there is a > chance that the > ANC may drop again with any of these options. > > I have noted that low ANC or platelets can be often > managed by > holding and restarting drug (even several times) > until the marrow > begins to convert to producing normal cells. > > > > > > > > > > > > > > > > > > > [Non-text portions of this message have been > removed] > > Quote Link to comment Share on other sites More sharing options...
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