Guest guest Posted November 5, 2008 Report Share Posted November 5, 2008 Hi there everyone, long time no post.... I check the posts at least 2 times a day on my phone so I know how you all are but I have not figured out yet how to reply on my phone. I recently got my most recent BCR/ABL results and I understand I am doing well but apparently my Oncologist told me MDACC are using this new system of testing so here is how my results have gone tell me what you think. Upon DX I didnt have a BCR/ABL so my Oncologist says lets presume you were at 100% on May 24, 2007 November 2007 11.10% April 2008 6.8% Aug 2008 6.4% In August I gave up eating meat and started going to the Gym 4-5 times a week. Oct 2008 1.9% I haven't posted on the CML weight loss site as I have not really lost any weight but I have lost inches and my energy level has zoomed. Next week my Husband and I are going on a cruise, the first time we have been away without the children in over 20 years! Please let me know if anyone understands what the name of this new testing is. Regards Donna In , ROBERTA DOYLE <rcd1929@...> wrote: > > Dearest , what took you so long????? Bobby > > > a (Bobby) Doyle > Brecksville, Ohio, USA > DX 05/1995 > 02/2000 - Gleevec Trial/OHSU > 06/2002 - Gleevec/Trisenox Trial/OHSU > 06/2003 - Gleevec/Zarnestra Trial/OHSU > 04/2004 - Sprycel Trial/MDACC, CCR in 10 months > #840 - Zavie's Zero Club > 09/2006 - out of CCR > 04/29/08 - XL228 Trial/ U.of Michigan > 06/02/08 - CCR ( in 4 weeks) > > > > > From: <bob-stewart@...> > Subject: [ ] Constipation--To Bobby Doyle > > Date: Wednesday, November 5, 2008, 9:56 AM > > > > > > > Dear Bobby, > > Are you telling us that you're full of what I always thought you were > full of? > > Bob , Granger, Indiana > > > > > > I think I could use some good advice here. The trial nurse said > that constipation is not a side effect of XL228. It does not matter, > the fact of the matter is this is a severe problem for me. My > gastroenterologist (sp) said to eat 1 cup all bran daily and take 3 > doses of metamucil. I also have been eating prunes, until I can no > longer get one down, nor can I keep on with the metamucil, it is > giving me acid reflux at night. I eat lots of salads, and Fiber One > for breakfast. These things are not working, any ideas on what will > work?? Maybe some TNT?? ha ha. > > Bobby > > > > > > a (Bobby) Doyle > > Brecksville, Ohio, USA > > DX 05/1995 > > 02/2000 - Gleevec Trial/OHSU > > 06/2002 - Gleevec/Trisenox Trial/OHSU > > 06/2003 - Gleevec/Zarnestra Trial/OHSU > > 04/2004 - Sprycel Trial/MDACC, CCR in 10 months > > #840 - Zavie's Zero Club > > 09/2006 - out of CCR > > 04/29/08 - XL228 Trial/ U.of Michigan > > 06/02/08 - CCR ( in 4 weeks) > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 10, 2008 Report Share Posted November 10, 2008 Hi Donna, It appears that you are a 'Turtle' when it comes to responding to CML drugs. We love our Turtles. They always manage to cross the finish line. What we need from you is a nickname. The queen of turtles is my friend Cogan. She was known as the 'Maui' Turtle. It took her 8 years to cross the finish line. I always have difficulty understanding PCR results when they are expressed as percentages. It is never clear to me what the initial starting point is. When the results are given as a whole number, you can find out what the number was at diagnosis time by asking the lab what number they are using. Each lab has established a PCR number that they use as the PCR value at diagnosis time. Once you have that number, you can compare any subsequent PCR test result to it and know exactly what your response has been. I haven't been able to figure it out when they use percentages. In any case, the gold standard for achieving CCR is the BMB test. They look at 20 cells and if it is 0 out of 20, you have achieved CCR. As long as you can maintain CCR, you will be fine. Achieving a 3 log reduction is better and getting to PCRU is best. Zavie Zavie (age 70) 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 3.6 log reduction Apr/08 3.6 log reduction Sep/08 e-mail: zmiller@... Tel: 613-726-1117 Fax: 309-296-0807 Cell: 613-282-0204 ID: zaviem YM: zaviemiller Skype: Zavie _____ From: [mailto: ] On Behalf Of donnaberry99 Sent: November 5, 2008 12:11 PM Subject: [ ] New Testing Hi there everyone, long time no post.... I check the posts at least 2 times a day on my phone so I know how you all are but I have not figured out yet how to reply on my phone. I recently got my most recent BCR/ABL results and I understand I am doing well but apparently my Oncologist told me MDACC are using this new system of testing so here is how my results have gone tell me what you think. Upon DX I didnt have a BCR/ABL so my Oncologist says lets presume you were at 100% on May 24, 2007 November 2007 11.10% April 2008 6.8% Aug 2008 6.4% In August I gave up eating meat and started going to the Gym 4-5 times a week. Oct 2008 1.9% I haven't posted on the CML weight loss site as I have not really lost any weight but I have lost inches and my energy level has zoomed. Next week my Husband and I are going on a cruise, the first time we have been away without the children in over 20 years! Please let me know if anyone understands what the name of this new testing is. Regards Donna In groups (DOT) <mailto:%40> com, ROBERTA DOYLE <rcd1929@...> wrote: > > Dearest , what took you so long????? Bobby > > > a (Bobby) Doyle > Brecksville, Ohio, USA > DX 05/1995 > 02/2000 - Gleevec Trial/OHSU > 06/2002 - Gleevec/Trisenox Trial/OHSU > 06/2003 - Gleevec/Zarnestra Trial/OHSU > 04/2004 - Sprycel Trial/MDACC, CCR in 10 months > #840 - Zavie's Zero Club > 09/2006 - out of CCR > 04/29/08 - XL228 Trial/ U.of Michigan > 06/02/08 - CCR ( in 4 weeks) > > > > > From: <bob-stewart@...> > Subject: [ ] Constipation--To Bobby Doyle > groups (DOT) <mailto:%40> com > Date: Wednesday, November 5, 2008, 9:56 AM > > > > > > > Dear Bobby, > > Are you telling us that you're full of what I always thought you were > full of? > > Bob , Granger, Indiana > > > > > > I think I could use some good advice here. The trial nurse said > that constipation is not a side effect of XL228. It does not matter, > the fact of the matter is this is a severe problem for me. My > gastroenterologist (sp) said to eat 1 cup all bran daily and take 3 > doses of metamucil. I also have been eating prunes, until I can no > longer get one down, nor can I keep on with the metamucil, it is > giving me acid reflux at night. I eat lots of salads, and Fiber One > for breakfast. These things are not working, any ideas on what will > work?? Maybe some TNT?? ha ha. > > Bobby > > > > > > a (Bobby) Doyle > > Brecksville, Ohio, USA > > DX 05/1995 > > 02/2000 - Gleevec Trial/OHSU > > 06/2002 - Gleevec/Trisenox Trial/OHSU > > 06/2003 - Gleevec/Zarnestra Trial/OHSU > > 04/2004 - Sprycel Trial/MDACC, CCR in 10 months > > #840 - Zavie's Zero Club > > 09/2006 - out of CCR > > 04/29/08 - XL228 Trial/ U.of Michigan > > 06/02/08 - CCR ( in 4 weeks) > > > > > > Quote Link to comment Share on other sites More sharing options...
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