Guest guest Posted July 24, 2009 Report Share Posted July 24, 2009 Hi Phyllis have you been on 800 G since 03. I am Pcru went from 400 to 600 now the onc says I must stay on 600.It this the same with you . dx 05 600 Gleevec ________________________________ From: Phyllis <phyld1943@...> Sent: Thursday, July 23, 2009 6:32:58 PM Subject: [ ] PCRU!!! Dear Group ~ I just learned that I continue to be PCRU. I think people in this group understand the waiting and uncertainty of every single test that we take. After six years of ups and downs, I am so thankful for these latest test results. Phyllis dx 7/2003 #605 800 mg Gleevec Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 24, 2009 Report Share Posted July 24, 2009 That's fantastic... I am really happy for you!! Unfortunately, after six years I have had three months, three tests that were positive. The last showed a 700% increase from the previous month. Next week I go for a BMA and a workup to check for mutations. No worries though, I know I have some options. Rich > > Dear Group ~ I just learned that I continue to be PCRU. I think people in this group understand the waiting and uncertainty of every single test that we take. After six years of ups and downs, I am so thankful for these latest test results. > Phyllis > dx 7/2003 > #605 > 800 mg Gleevec > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 24, 2009 Report Share Posted July 24, 2009 What superb news! Congratulations, Phyllis! Cheering for you in San Francisco, From: phyld1943@... Date: Thu, 23 Jul 2009 23:32:58 +0000 Subject: [ ] PCRU!!! Dear Group ~ I just learned that I continue to be PCRU. I think people in this group understand the waiting and uncertainty of every single test that we take. After six years of ups and downs, I am so thankful for these latest test results. Phyllis dx 7/2003 #605 800 mg Gleevec _________________________________________________________________ Windows Live™ Hotmail®: Celebrate the moment with your favorite sports pics. Check it out. http://www.windowslive.com/Online/Hotmail/Campaign/QuickAdd?ocid=TXT_TAGLM_WL_QA\ _HM_sports_photos_072009 & cat=sports Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 24, 2009 Report Share Posted July 24, 2009 Hang in there, buddy. You know we're all behind you. Knowing you have options is great! From: richard.troxel@... Date: Thu, 23 Jul 2009 23:55:55 +0000 Subject: [ ] Re: PCRU!!! That's fantastic... I am really happy for you!! Unfortunately, after six years I have had three months, three tests that were positive. The last showed a 700% increase from the previous month. Next week I go for a BMA and a workup to check for mutations. No worries though, I know I have some options. Rich > > Dear Group ~ I just learned that I continue to be PCRU. I think people in this group understand the waiting and uncertainty of every single test that we take. After six years of ups and downs, I am so thankful for these latest test results. > Phyllis > dx 7/2003 > #605 > 800 mg Gleevec > _________________________________________________________________ Windows Live™ SkyDrive™: Store, access, and share your photos. See how. http://windowslive.com/Online/SkyDrive?ocid=TXT_TAGLM_WL_CS_SD_photos_072009 Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 24, 2009 Report Share Posted July 24, 2009 Congratulations Phyllis! That is certainly wonderful news! Have you been on Gleevec since diagnosis? ________________________________ From: Phyllis <phyld1943@...> Sent: Thursday, July 23, 2009 4:32:58 PM Subject: [ ] PCRU!!! Dear Group ~ I just learned that I continue to be PCRU. I think people in this group understand the waiting and uncertainty of every single test that we take. After six years of ups and downs, I am so thankful for these latest test results. Phyllis dx 7/2003 #605 800 mg Gleevec Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 24, 2009 Report Share Posted July 24, 2009 Hi Phyllis - congratulations, it's a lovely place to be! Regards, From: [mailto: ] On Behalf Of Phyllis Sent: Friday, 24 July 2009 9:33 AM Subject: [ ] PCRU!!! Dear Group ~ I just learned that I continue to be PCRU. I think people in this group understand the waiting and uncertainty of every single test that we take. After six years of ups and downs, I am so thankful for these latest test results. Phyllis dx 7/2003 #605 800 mg Gleevec Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 24, 2009 Report Share Posted July 24, 2009 Hi Rich, I'm sorry to hear about your increase, that must be a shock. Were you PCRU previously? On Glivec? Regards, From: [mailto: ] On Behalf Of richard_troxel Sent: Friday, 24 July 2009 9:56 AM Subject: [ ] Re: PCRU!!! That's fantastic... I am really happy for you!! Unfortunately, after six years I have had three months, three tests that were positive. The last showed a 700% increase from the previous month. Next week I go for a BMA and a workup to check for mutations. No worries though, I know I have some options. Rich > > Dear Group ~ I just learned that I continue to be PCRU. I think people in this group understand the waiting and uncertainty of every single test that we take. After six years of ups and downs, I am so thankful for these latest test results. > Phyllis > dx 7/2003 > #605 > 800 mg Gleevec > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 24, 2009 Report Share Posted July 24, 2009 Hi , Yes, I've been PCRU for several years. I was first dx 2/10/03 and began Gleevec about a month later. My first ONC was terrified at how low my WBC counts went and played yoyo with my dosages. With the help of the first CML group I got him straightened out and then switched doctors. I first went PCRU in 9/03... I'm on Zavie's list but I can't remember my number... it was pretty low. I occassionally had positive PCR results but they were always very low, in the 10 to the minus 7 category. My resent results were the first positive numbers in two years. I count my self a lucky guy. I'm 65, married to a wonderful woman for 39 years next week. I'm a combat veteran paratrooper. In 2000 I had a benign tumor removed from the pituitary. In 2003 CML. In 2005 my cancerous prostate was removed... No worries, I'm a survivor and a fighter. I love my wife, I love life and I love God who has been great to me! Hugs , Rich > > Hi Rich, > > > > I'm sorry to hear about your increase, that must be a shock. Were you PCRU > previously? On Glivec? > > > > Regards, > > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 24, 2009 Report Share Posted July 24, 2009 Thanks for all the good wishes. , I am sorry about your recent tests. I really do hope all goes well with you. Like you, my counts were up and down when I was first diagnosed in 2003, and my Gleevec dose was adjusted accordingly. Fortunately I have a great doctor who is a CML expert, and my counts eventually stabilized. I was finally put on 400 mg and was now 0%PH on my Fish test. Things went along smoothly for a year and then my liver enzymes skyrocketed. I was taken off of Gleevec for three months and my Gleevec dose was slowly increased. Unfortunately my zero fish was gone, and my numbers wouldn't come down. Dr. Schiffer gradually upped my dose of Gleevec to 800mg. I have been on 8oomg since 2004 and have been PCRU for the last three years. Tomorrow is my 39th wedding anniversary. I have a lot to be thankful for...a wonderful husband who has been my rock through all of this, and now wonderful test results. Phyllis Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 24, 2009 Report Share Posted July 24, 2009 Hi Rich, you are indeed a lucky guy! I count myself as one of the lucky ones too. I was dx 14 yrs. ago, and have been in 6 trials in the last 8 years, including Gleevec and Sprycel and now Ariad. These trials have allowed me an extra 9 years of life, they have allowed me to see 9 grand children graduate from high school, one grand child to graduate from college, I have seen 3 of them married, and I have lived to see three great grand children come into this world. I have had the love and support of 6 wonderful children, and although I have never reached PCRU, I have been and still am in CCR. If for some reason Ariad fails me, perhaps there will be another drug out there. If not, I know I can say I gave it my all, and maybe helped out a few others on the way. I thank God for the doctors like Dr. Druker and Dr. Talpaz who have made these last 9 years possible, and here's to you and I both having another 9 years at least! Blessings, 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) 02/13/09 - XL trial ended due to side effects 04/13/09 - New Trial, Ariad / U. of Mich./ Dr. Talpaz From: richard_troxel <richard.troxel@...> Subject: [ ] Re: PCRU!!! Date: Thursday, July 23, 2009, 11:58 PM Hi , Yes, I've been PCRU for several years. I was first dx 2/10/03 and began Gleevec about a month later. My first ONC was terrified at how low my WBC counts went and played yoyo with my dosages. With the help of the first CML group I got him straightened out and then switched doctors. I first went PCRU in 9/03... I'm on Zavie's list but I can't remember my number... it was pretty low. I occassionally had positive PCR results but they were always very low, in the 10 to the minus 7 category. My resent results were the first positive numbers in two years. I count my self a lucky guy. I'm 65, married to a wonderful woman for 39 years next week. I'm a combat veteran paratrooper. In 2000 I had a benign tumor removed from the pituitary. In 2003 CML. In 2005 my cancerous prostate was removed... No worries, I'm a survivor and a fighter. I love my wife, I love life and I love God who has been great to me! Hugs , Rich > > Hi Rich, > > > > I'm sorry to hear about your increase, that must be a shock. Were you PCRU > previously? On Glivec? > > > > Regards, > > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 25, 2009 Report Share Posted July 25, 2009 O!!! YIPPEEE!!! Hi Rich, you're # 7 2 7 _____ From: [mailto: ] On Behalf Of richard_troxel Sent: July 23, 2009 11:59 PM Subject: [ ] Re: PCRU!!! Hi , Yes, I've been PCRU for several years. I was first dx 2/10/03 and began Gleevec about a month later. My first ONC was terrified at how low my WBC counts went and played yoyo with my dosages. With the help of the first CML group I got him straightened out and then switched doctors. I first went PCRU in 9/03... I'm on Zavie's list but I can't remember my number... it was pretty low. I occassionally had positive PCR results but they were always very low, in the 10 to the minus 7 category. My resent results were the first positive numbers in two years. I count my self a lucky guy. I'm 65, married to a wonderful woman for 39 years next week. I'm a combat veteran paratrooper. In 2000 I had a benign tumor removed from the pituitary. In 2003 CML. In 2005 my cancerous prostate was removed... No worries, I'm a survivor and a fighter. I love my wife, I love life and I love God who has been great to me! Hugs , Rich > > Hi Rich, > > > > I'm sorry to hear about your increase, that must be a shock. Were you PCRU > previously? On Glivec? > > > > Regards, > > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 26, 2009 Report Share Posted July 26, 2009 Hi Rich, I thoroughly enjoyed reading your post. What an inspiration for us all to live by. God Bless you, Jackie S. From: richard_troxel <richard.troxel@ gmail.com> Subject: [ ] Re: PCRU!!! groups (DOT) com Date: Thursday, July 23, 2009, 11:58 PM Hi , Yes, I've been PCRU for several years. I was first dx 2/10/03 and began Gleevec about a month later. My first ONC was terrified at how low my WBC counts went and played yoyo with my dosages. With the help of the first CML group I got him straightened out and then switched doctors. I first went PCRU in 9/03... I'm on Zavie's list but I can't remember my number... it was pretty low. I occassionally had positive PCR results but they were always very low, in the 10 to the minus 7 category. My resent results were the first positive numbers in two years. I count my self a lucky guy. I'm 65, married to a wonderful woman for 39 years next week. I'm a combat veteran paratrooper. In 2000 I had a benign tumor removed from the pituitary. In 2003 CML. In 2005 my cancerous prostate was removed... No worries, I'm a survivor and a fighter. I love my wife, I love life and I love God who has been great to me! Hugs , Rich > > Hi Rich, > > > > I'm sorry to hear about your increase, that must be a shock. Were you PCRU > previously? On Glivec? > > > > Regards, > > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Recommended Posts
Join the conversation
You are posting as a guest. If you have an account, sign in now to post with your account.
Note: Your post will require moderator approval before it will be visible.