Guest guest Report post Posted March 13, 2008 > > Hey Guys, > My Onc just called with the results of my PCR > Sept 07 I was 0.068 > Dec I was 0.027 > now I am 0.048 I assume these are all from the same lab and these are percentages. First, these are very low numbers and that is very good. Some fluctuation in results, especially when they are very low, is somewhat common even when all testing is done at one lab. Now different doctors will use various schemes for changing dosage or drugs. The most common seems to be the PCR should go up by a factor of at least 10 and this should occur over at least 2 tests several months apart. This will rule out the inherent variability of that lab. Your result only nearly doubled (2x) from one test to another. I would only get concerned if the PCR result got above lets say 0.3%. I don't think this will happen but some advice for all while on this subject. A FISH or cytogenetics test is unlikely to see ANYTHING at PCR perentages less than 1%. This is about the range at which Ph+ cells or metaphases can be minimally detected. And I don't think anyone really knows but most think this range is also too soon for any mutation testing. Need more CML cells to be around for a sucessful mutation analysis. As to your question on missed doses. No one really knows the answer but Gleevec typically persists in the blood for more than a day. Missing a single day every now and then seems unlikely to have any significant effect. I believe your fine. Talk to your doctor about getting another PCR done in a month or two to rule out any concerns. If the PCR is still trending up, then consider a change. Quote Share this post Link to post Share on other sites
Guest guest Report post Posted March 13, 2008 Hi Donna, Your counts are excellent, stable and within accuracy of the PCR test. There is no hint the treatment is failing. I have always said that it take 3 consecutive results to show any kind of a trend. It is obvious that your doctor has not had much experience in treating CML patients. There is nothing in your counts that would suggest an increase to 600 mg. It would be nuts to consider switching to Sprycel when Gleevec is doing such an outstanding job. PCR results can go up and down by half a log. Zavie Zavie (age 69) 67 Shoreham Avenue Ottawa, Canada, K2G 3X3 dxd AUG/99 INF OCT/99 to FEB/00, CHF No meds FEB/00 to JAN/01 Gleevec since MAR/27/01 (400 mg) CCR SEP/01. #102 in Zero Club 2.8 log reduction Sep/05 3.0 log reduction Jan/06 2.9 log reduction Feb/07 3.2 log reduction Jun/07 3.6 log reduction Sep/07 3.5 log reduction Feb/08 e-mail: zmiller@... Tel: 613-726-1117 Fax: 309-296-0807 Cell: 613-202-0204 ID: zaviem YM: zaviemiller Skype: Zavie _____ From: [mailto: ] On Behalf Of donnaberry99 Sent: March 12, 2008 7:01 PM Subject: [ ] Help Hey Guys, My Onc just called with the results of my PCR Sept 07 I was 0.068 Dec I was 0.027 now I am 0.048 I am freaking out!!!!!!!!!!! he couldn't decide if he wants me to go up to 600mg on Gleevec (now on 400) or just switch to Sprycel. I have to say about 7-10 days before my test I had forgotten my Gleevec 3 times in a weeks period, could this have any effect??? My gut feeling is to have the PCR test done again. I never imagined things would go pear shaped this soon??????? My Onc is calling Dr. Cortes (MD ) to get his recommendation. Can your PCR results go up and down??? Regards Donna Quote Share this post Link to post Share on other sites
Guest guest Report post Posted March 13, 2008 Hi Donna, I agree with Zavie, your results are completely stable and within the normal fluctuation of the test. I've had my PCR go up almost a complete log only to watch it go back down again the next time. There is a huge variation with PCR results and you're no where near a variation that I would be concerned about. What I would be concerned about is your doctor suggesting a change in treatment. He had no business making you worry over this. Tracey > > Hi Donna, > > Your counts are excellent, stable and within accuracy of the PCR test. There > is no hint the treatment is failing. I have always said that it take 3 > consecutive results to show any kind of a trend. > > It is obvious that your doctor has not had much experience in treating CML > patients. There is nothing in your counts that would suggest an increase to > 600 mg. It would be nuts to consider switching to Sprycel when Gleevec is > doing such an outstanding job. > > PCR results can go up and down by half a log. > > Zavie > > > > Zavie (age 69) > 67 Shoreham Avenue > Ottawa, Canada, K2G 3X3 > dxd AUG/99 > INF OCT/99 to FEB/00, CHF > No meds FEB/00 to JAN/01 > Gleevec since MAR/27/01 (400 mg) > CCR SEP/01. #102 in Zero Club > 2.8 log reduction Sep/05 > 3.0 log reduction Jan/06 > 2.9 log reduction Feb/07 > 3.2 log reduction Jun/07 > 3.6 log reduction Sep/07 > 3.5 log reduction Feb/08 > e-mail: zmiller@... > Tel: 613-726-1117 > Fax: 309-296-0807 > Cell: 613-202-0204 > ID: zaviem > YM: zaviemiller > Skype: Zavie > > _____ > > From: [mailto: ] On Behalf Of > donnaberry99 > Sent: March 12, 2008 7:01 PM > > Subject: [ ] Help > > Hey Guys, > My Onc just called with the results of my PCR > Sept 07 I was 0.068 > Dec I was 0.027 > now I am 0.048 > I am freaking out!!!!!!!!!!! he couldn't decide if he wants me to go up > to 600mg on Gleevec (now on 400) or just switch to Sprycel. I have to > say about 7-10 days before my test I had forgotten my Gleevec 3 times > in a weeks period, could this have any effect??? My gut feeling is to > have the PCR test done again. I never imagined things would go pear > shaped this soon??????? My Onc is calling Dr. Cortes (MD ) to > get his recommendation. Can your PCR results go up and down??? > Regards Donna > > > > Quote Share this post Link to post Share on other sites
Guest guest Report post Posted March 13, 2008 My Onco advised me your PCR rate can go up a little but unless it is a drastic change he does not plan to raise my dosage or take me off Gleevec Terry On Wed, Mar 12, 2008 at 6:01 PM, donnaberry99 <no_reply > wrote: > Hey Guys, > My Onc just called with the results of my PCR > Sept 07 I was 0.068 > Dec I was 0.027 > now I am 0.048 > I am freaking out!!!!!!!!!!! he couldn't decide if he wants me to go up > to 600mg on Gleevec (now on 400) or just switch to Sprycel. I have to > say about 7-10 days before my test I had forgotten my Gleevec 3 times > in a weeks period, could this have any effect??? My gut feeling is to > have the PCR test done again. I never imagined things would go pear > shaped this soon??????? My Onc is calling Dr. Cortes (MD ) to > get his recommendation. Can your PCR results go up and down??? > Regards Donna > > > Quote Share this post Link to post Share on other sites
Guest guest Report post Posted March 13, 2008 Donna, what lab are you using for your PCR test? ez Quote Share this post Link to post Share on other sites
Guest guest Report post Posted March 13, 2008 - I am not sure which Lab? I did clarify with the Onc that all of my tests had been carried out at the same lab though, my Oncologist is in Pensacola. regards Donna > > Donna, what lab are you using for your PCR test? > > > > ez > > > > > > Quote Share this post Link to post Share on other sites
Guest guest Report post Posted March 14, 2008 Donna, I live in Tampa and we had a few times used Lab Corp and they tend to fluctuate too often without making any good sense. They also do not have the best equipment for testing. Our local cancer center here also uses a facility that has yet to update to the latest and greatest. That being said we now use only the lab that also looks at my BMB's and that's Genzyne Genetics in Colorado. They have the most up to date equipment in the US and their test always differed from the other labs. ez Quote Share this post Link to post Share on other sites
Guest guest Report post Posted March 22, 2008 Hi Edgardo, I think I can help you out. Please email me privately at coralee.williams@... Coralee On Fri, 21 Mar 2008 00:14:42 -0700 (PDT), Edgardo <edultrasound@...> wrote: > 3.21.2008 > > Hello Everyone, > > I am experiencing problems with Novartis: unfortunately my oncologist > was not aware of the fact we are to get a letter to Novartis stating > refills of Gleevec are to be shipped every month. As a result, I have > enough Gleevec to get me through until Monday of next week (3/26). I am > told by Novartis it will take at least a week and perhaps longer to ship > the medicine after they receive the letter from the doctor (faxed to them > today). Does anyone have any extra Gleevec so that I do not have to stop > taking it? Since I am a new CML patient, I do not want to miss taking the > drug. > > I have some Hydrea which I have not used: if someone needs Hydrea, I > will be glad to ship it to them. > > Thank you for your help in advance. > > Ed > > > Edgardo > > > --------------------------------- > Be a better friend, newshound, and know-it-all with Mobile. Try it > now. > > Quote Share this post Link to post Share on other sites
Guest guest Report post Posted March 22, 2008 Hello Coralee, thank you very much, but has already send me the Glivec. Thank you again and God bless you! Ed Cml Dx: 01-09-08 coralee.williams@... wrote: Hi Edgardo, I think I can help you out. Please email me privately at coralee.williams@... Coralee On Fri, 21 Mar 2008 00:14:42 -0700 (PDT), Edgardo <edultrasound@...> wrote: > 3.21.2008 > > Hello Everyone, > > I am experiencing problems with Novartis: unfortunately my oncologist > was not aware of the fact we are to get a letter to Novartis stating > refills of Gleevec are to be shipped every month. As a result, I have > enough Gleevec to get me through until Monday of next week (3/26). I am > told by Novartis it will take at least a week and perhaps longer to ship > the medicine after they receive the letter from the doctor (faxed to them > today). Does anyone have any extra Gleevec so that I do not have to stop > taking it? Since I am a new CML patient, I do not want to miss taking the > drug. > > I have some Hydrea which I have not used: if someone needs Hydrea, I > will be glad to ship it to them. > > Thank you for your help in advance. > > Ed > > > Edgardo > > > --------------------------------- > Be a better friend, newshound, and know-it-all with Mobile. Try it > now. > > Quote Share this post Link to post Share on other sites
Guest guest Report post Posted May 28, 2008 --- In Rheumatoid Arthritis , " hazel " <hazel.todd@...> wrote: > > Hi well i dont know if you remember me sending a message on here? > Quick breif is ... > Im a single mum 38 with RA in my spine & pelvis. > I was going to the doc to get pain killers. > I have had a xray 2yrs ago & 2 lots of blood tests to confirm. > > After 2 yrs ive now been to the hospital to see a Rheumatoligist now > thats when my mind went blank why didnt i right notes down!! > She looked at my notes about my xray which was 2yrs ago there were no > pictures just notes about it. > She said its not too bad but that ive def got RA. > Now how can she tell me its not too bad now this day from 2yrs ago & > im in constant pain even with pain killers (thay just help me to cope > with the pain)I cant walk far i cant dress myself i have a carer to > do that in the mornings. > She's (the doctor rheum) said i just needed an eperdurial in my spine? > Now i know there are drugs out there that can slow this RA down so > why hasnt she put me on them? Im still confused Whats going to hapen > to me im in pain i hate it its really getting me down no one seems to > be explaining things propley to me? > Please someone explain things to me i know nothing accept the pain & > ive got something destroying me. > > Hazel Todd x hi hazel, keep your head up I'm 51 and i have been doing this since age 15.and at time RA is hard to cope with and you seem to be feeling that now with DR. AND ALL.I know what you going throuh maybe i can help.god bless > Quote Share this post Link to post Share on other sites
Guest guest Report post Posted June 25, 2008 Dear Hazel Read my previous posts. You have RA in your spine and should be on a biologic. Remicade is the one I recommend. Manage the disease first, and then the pain. Find another RD if your needs arent being met. Make sure you have any records or xrays forwarded from your last RD or PCP to take the guess work out of the treatment process. Doctors are blind without tests to help them. Good Luck. Deborah On Wed, May 28, 2008 at 12:38 PM, sunsrhod56 <onolet72@...> wrote: >> Hi well i dont know if you remember me sending a message on here? > Quick breif is ...> Im a single mum 38 with RA in my spine & pelvis.> I was going to the doc to get pain killers.> I have had a xray 2yrs ago & 2 lots of blood tests to confirm.> > After 2 yrs ive now been to the hospital to see a Rheumatoligist now > thats when my mind went blank why didnt i right notes down!!> She looked at my notes about my xray which was 2yrs ago there were no > pictures just notes about it.> She said its not too bad but that ive def got RA.> Now how can she tell me its not too bad now this day from 2yrs ago & > im in constant pain even with pain killers (thay just help me to cope > with the pain)I cant walk far i cant dress myself i have a carer to > do that in the mornings.> She's (the doctor rheum) said i just needed an eperdurial in my spine?> Now i know there are drugs out there that can slow this RA down so > why hasnt she put me on them? Im still confused Whats going to hapen > to me im in pain i hate it its really getting me down no one seems to > be explaining things propley to me?> Please someone explain things to me i know nothing accept the pain & > ive got something destroying me.> > Hazel Todd xhi hazel, keep your head up I'm 51 and i have been doing this since age 15.and at time RA is hard to cope with and you seem to be feeling that now with DR. AND ALL.I know what you going throuh maybe i can help.god bless > Quote Share this post Link to post Share on other sites
Guest guest Report post Posted April 16, 2010 Hello, I am getting flooded with emails. Is there a way I can just go to the site to look over them instead of having them all come to my email? Thanks in advance, Beth Quote Share this post Link to post Share on other sites
Guest guest Report post Posted April 16, 2010 Sure. Just log into the site and change your preferences to not receive any emails. From: [mailto: ] On Behalf Of Beth Sent: Friday, April 16, 2010 9:55 AM Subject: [ ] help Hello, I am getting flooded with emails. Is there a way I can just go to the site to look over them instead of having them all come to my email? Thanks in advance, Beth Quote Share this post Link to post Share on other sites
Guest guest Report post Posted July 13, 2010 Katy, Won't help you now, but from now on, wear gloves when working out there. Even water with a hose is evidentially bad for you. Bill webriter wrote: > > > Ok, I'm not asking for a DX, I could go to the free clinic but I know > the obnoxious doctor there, without even looking at my hands [and after > I sit for three full hours waiting, AND have a few extremely painful > blood pressures done] > Will say, " contact dermatitis " write a RX for some gasoline based salve > [ I cannot use] and that will be that. I apparently was bitten on the > backs of both hands and they itch like crazy, now both are very swollen > and even hot water doesn't make them stop itching. I wake up > scratching, and it is awful! I was just bitten Sunday morning while > watering my garden, I never saw anything get me, but after I got to > church it was itching bad, within minutes.. >   ~Katy > Sheep to the right; His Lamb > “In repentance and rest is your salvation, in quietness and trust is > your strength " Isa 30:15 > http://orchardhouseheirlooms.com/product_info.php/cPath/157_163/products_id/199 survival > seeds > Christian-homesteaders/ > <Christian-homesteaders/?yguid=227010598> biblical > survival Quote Share this post Link to post Share on other sites
Guest guest Report post Posted July 13, 2010 Try an oatmeal soak... if that doesn't work try black walnut tincture. Suzi List Owner health What is a weed? A plant whose virtues have not yet been discovered. From: webriter <webriter@...>Subject: help Date: Monday, July 12, 2010, 10:11 PM Ok, I'm not asking for a DX, I could go to the free clinic but I know the obnoxious doctor there, without even looking at my hands [and after I sit for three full hours waiting, AND have a few extremely painful blood pressures done] Will say, "contact dermatitis" write a RX for some gasoline based salve [ I cannot use] and that will be that. I apparently was bitten on the backs of both hands and they itch like crazy, now both are very swollen and even hot water doesn't make them stop itching. I wake up scratching, and it is awful! I was just bitten Sunday morning while watering my garden, I never saw anything get me, but after I got to church it was itching bad, within minutes..   ~Katy Sheep to the right; His Lamb “In repentance and rest is your salvation, in quietness and trust is your strength" Isa 30:15 http://orchardhouseheirlooms.com/product_info.php/cPath/157_163/products_id/199 survival seeds Christian-homesteaders/ biblical survival Quote Share this post Link to post Share on other sites
Guest guest Report post Posted July 13, 2010 A tincture? Infusion?   ~Katy Sheep to the right; His Lamb “In repentance and rest is your salvation, in quietness and trust is your strength" Isa 30:15 http://orchardhouseheirlooms.com/product_info.php/cPath/157_163/products_id/199 survival seeds Christian-homesteaders/ biblical survival -- RE: help Hm. Maybe some calendula??Ev"A hundred million miracles are happening every day!" I apparently was bitten on the backs of both hands and they itch like crazy, now both are very swollen and even hot water doesn't make them stop itching. I wake up scratching, and it is awful! I was just bitten Sunday morning while watering my garden, I never saw anything get me, but after I got to church it was itching bad, within minutes..   ~Katy Quote Share this post Link to post Share on other sites
Guest guest Report post Posted July 13, 2010 Thanks, I will try them.   ~Katy Sheep to the right; His Lamb “In repentance and rest is your salvation, in quietness and trust is your strength" Isa 30:15 http://orchardhouseheirlooms.com/product_info.php/cPath/157_163/products_id/199 survival seeds Christian-homesteaders/ biblical survival -- help Date: Monday, July 12, 2010, 10:11 PM Ok, I'm not asking for a DX, I could go to the free clinic but I know the obnoxious doctor there, without even looking at my hands [and after I sit for three full hours waiting, AND have a few extremely painful blood pressures done] Will say, "contact dermatitis" write a RX for some gasoline based salve [ I cannot use] and that will be that. I apparently was bitten on the backs of both hands and they itch like crazy, now both are very swollen and even hot water doesn't make them stop itching. I wake up scratching, and it is awful! I was just bitten Sunday morning while watering my garden, I never saw anything get me, but after I got to church it was itching bad, within minutes..   ~Katy Sheep to the right; His Lamb “In repentance and rest is your salvation, in quietness and trust is your strength" Isa 30:15 http://orchardhouseheirlooms.com/product_info.php/cPath/157_163/products_id/199 survival seeds Christian-homesteaders/ biblical survival No virus found in this incoming message.Checked by AVG - www.avg.comVersion: 8.5.441 / Virus Database: 271.1.1/3002 - Release Date: 07/13/10 06:36:00 Quote Share this post Link to post Share on other sites
Guest guest Report post Posted July 13, 2010 Calendula cream or lotion.Ev"A hundred million miracles are happening every day!" Quote Share this post Link to post Share on other sites
Guest guest Report post Posted July 13, 2010 Ok, great I have some of that.   ~Katy Sheep to the right; His Lamb “In repentance and rest is your salvation, in quietness and trust is your strength" Isa 30:15 http://orchardhouseheirlooms.com/product_info.php/cPath/157_163/products_id/199 survival seeds Christian-homesteaders/ biblical survival -- RE: help Calendula cream or lotion.Ev"A hundred million miracles are happening every day!" Quote Share this post Link to post Share on other sites
Guest guest Report post Posted July 13, 2010 Lol, I have that too. Actually today it's not as bad, I've been using hot water and ice packs, it really helped, I doubted it would considering the inflammation in my hands, but I'm ever so much better, thanks everyone for your help.   ~Katy Sheep to the right; His Lamb “In repentance and rest is your salvation, in quietness and trust is your strength" Isa 30:15 http://orchardhouseheirlooms.com/product_info.php/cPath/157_163/products_id/199 survival seeds Christian-homesteaders/ biblical survival -- RE: help Well, lavender is also good for skin; I got myself sunburned last spring, and applied some lavender lotion (which was actually meant to be face lotion). The worst shoulder only peeled once and the other not at all! Que milagro!!Ev"A hundred million miracles are happening every day!" Ok, great I have some of that.   ~Katy Quote Share this post Link to post Share on other sites
