Guest guest Posted August 4, 2008 Report Share Posted August 4, 2008 Hi Colli, wow, you've had a time of it. I have been through most of the drugs, gleevec, sprycel a couple combinations. I am now in a trial,XL228, which is an infusion once a week and is working well for me. Problem is, where else are they doing this trial and is there one near you. I don't know the answers to those questions, but Tracey or Zavie might, some one will,. I go to Ann Arbor, Michigan once a week, but it is not that far for me, 175 miles. Good luck,. 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: Markay27@... <Markay27@...> Subject: [ ] WLS ? Date: Monday, August 4, 2008, 1:39 AM Hello Group, It's been a while since I asked anything and I'm sorry,but I'm in great need now. Ok, I had open RNY weight loss surgery May 2005. The in May of 2006 I found out I had CML. My husband is Army and was Red Crossed home due to how ill I was and we have small children at that time. Anyway, I was started on Geevec and it seemed ok and worked for about 12 months or so. I really hate taking all the meds back since my WLS I have to chew them up and it's pretty nasty to say the least. Then off to Sprysal and I had and terrible time on that. A couple months later I was put on Tasigna. Real bad sideeffects on that one too. Now I'm back on gellevec and it's not working as well as it should as of So here's my question.... Should I keep trying to play around with the same meds get myself ready for the BMT? The Army let my husband stay back this time,so he could take care of things and be there for me and I'm so grateful to the Army. But there are no promises about him staying back the next tour coming up. So, are there any one in the group having issues like myself because of WLS? Or can anyone suggest taking the pill different ways that may work? Until they come out with a injectable or liquid med. I'm pretty screwed at this point. Any suggestions would be appreciated. I'm grasping at straws right now I'm sure yall can understand. Hope everyone has a healthy a happy week. Colli from FL, but now in TN. WLS-5/17/05 CML-5/16/06 ************ **Looking for a car that's sporty, fun and fits in your budget? Read reviews on AOL Autos. (http://autos. aol.com/cars- BMW-128-2008/ expert-review? ncid=aolaut00050 000000017 ) Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 4, 2008 Report Share Posted August 4, 2008 Here are the trial locations from the NIH site. Zavie Trial Contact Information Trial Lead Organizations/Sponsors Exelixis, Incorporated Trial Sites U.S.A. California Los Angeles Jonsson Comprehensive Cancer Center at UCLA Kimhouy Tong Ph: 310-794-0738 Email: <http://www.cancer.gov/search/%09%09%09%09%09%09%09%09%09%09%09%09%09%09%09% 09%09mailto:ktong@...?Subject=NCT00464113,XL228-001:-%20Study%20 of%20XL228%20in%20Subjects%20With%20Chronic%20Myeloid%20Leukemia%20or%20Phil adelphia-Chromosome-Positive%20Acute%20Lymphocytic%20Leukemia> ktong@... Paquette, MD Principal Investigator San Francisco UCSF Helen Diller Family Comprehensive Cancer Center Patty Olszynski Ph: 415-502-1564 Email: <http://www.cancer.gov/search/%09%09%09%09%09%09%09%09%09%09%09%09%09%09%09% 09%09mailto:POlszynski@...?Subject=NCT00464113,XL228-001:-%20S tudy%20of%20XL228%20in%20Subjects%20With%20Chronic%20Myeloid%20Leukemia%20or %20Philadelphia-Chromosome-Positive%20Acute%20Lymphocytic%20Leukemia> POlszynski@... Neil P. Shah, MD, PhD Principal Investigator District of Columbia Washington Lombardi Comprehensive Cancer Center at town University Medical Center Begley, RN, BSN Ph: 202-687-6185 Ekatherine Asatiani, MD Principal Investigator Florida Tampa H. Lee Moffitt Cancer Center and Research Institute at University of South Florida Burton Ph: 813-745-4210 Email: <http://www.cancer.gov/search/%09%09%09%09%09%09%09%09%09%09%09%09%09%09%09% 09%09mailto:.Burton@...?Subject=NCT00464113,XL228-001:-%20St udy%20of%20XL228%20in%20Subjects%20With%20Chronic%20Myeloid%20Leukemia%20or% 20Philadelphia-Chromosome-Positive%20Acute%20Lymphocytic%20Leukemia> .Burton@... Pinilla-Ibarz, MD, PhD Principal Investigator Michigan Ann Arbor University of Michigan Comprehensive Cancer Center Tonya Neil Ph: 734-764-6847 Moshe Talpaz, MD Principal Investigator Texas Houston M. D. Cancer Center at University of Texas Gwen Hunter Ph: 713-563-1681 Email: <http://www.cancer.gov/search/%09%09%09%09%09%09%09%09%09%09%09%09%09%09%09% 09%09mailto:dolhunter@...?Subject=NCT00464113,XL228-001:-%20Study %20of%20XL228%20in%20Subjects%20With%20Chronic%20Myeloid%20Leukemia%20or%20P hiladelphia-Chromosome-Positive%20Acute%20Lymphocytic%20Leukemia> dolhunter@... Cortes, MD Principal Investigator <http://clinicaltrials.gov/show/NCT00464113> Link to the current ClinicalTrials.gov record. NLM Identifer NCT00464113 Information obtained from ClinicalTrials.gov on February 27, 2008 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 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 ROBERTA DOYLE Sent: August 4, 2008 7:46 AM Subject: Re: [ ] WLS ? Hi Colli, wow, you've had a time of it. I have been through most of the drugs, gleevec, sprycel a couple combinations. I am now in a trial,XL228, which is an infusion once a week and is working well for me. Problem is, where else are they doing this trial and is there one near you. I don't know the answers to those questions, but Tracey or Zavie might, some one will,. I go to Ann Arbor, Michigan once a week, but it is not that far for me, 175 miles. Good luck,. 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: Markay27aol (DOT) <mailto:Markay27%40aol.com> com <Markay27aol (DOT) <mailto:Markay27%40aol.com> com> Subject: [ ] WLS ? groups (DOT) <mailto:%40> com Date: Monday, August 4, 2008, 1:39 AM Hello Group, It's been a while since I asked anything and I'm sorry,but I'm in great need now. Ok, I had open RNY weight loss surgery May 2005. The in May of 2006 I found out I had CML. My husband is Army and was Red Crossed home due to how ill I was and we have small children at that time. Anyway, I was started on Geevec and it seemed ok and worked for about 12 months or so. I really hate taking all the meds back since my WLS I have to chew them up and it's pretty nasty to say the least. Then off to Sprysal and I had and terrible time on that. A couple months later I was put on Tasigna. Real bad sideeffects on that one too. Now I'm back on gellevec and it's not working as well as it should as of So here's my question.... Should I keep trying to play around with the same meds get myself ready for the BMT? The Army let my husband stay back this time,so he could take care of things and be there for me and I'm so grateful to the Army. But there are no promises about him staying back the next tour coming up. So, are there any one in the group having issues like myself because of WLS? Or can anyone suggest taking the pill different ways that may work? Until they come out with a injectable or liquid med. I'm pretty screwed at this point. Any suggestions would be appreciated. I'm grasping at straws right now I'm sure yall can understand. Hope everyone has a healthy a happy week. Colli from FL, but now in TN. WLS-5/17/05 CML-5/16/06 ************ **Looking for a car that's sporty, fun and fits in your budget? Read reviews on AOL Autos. (http://autos. aol.com/cars- BMW-128-2008/ expert-review? ncid=aolaut00050 000000017 ) Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 4, 2008 Report Share Posted August 4, 2008 Hi Colli, My best advice in your situation is to get a consultation with one of the top CML doctors (Talpaz, Druker) and get their advice. Zavie Dr. Moishe Talpaz mtalpaz@... 734-764-8195 Dr. Druker drukerb@... 503-494-5596 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 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 Markay27@... Sent: August 4, 2008 1:40 AM Subject: [ ] WLS ? Hello Group, It's been a while since I asked anything and I'm sorry,but I'm in great need now. Ok, I had open RNY weight loss surgery May 2005. The in May of 2006 I found out I had CML. My husband is Army and was Red Crossed home due to how ill I was and we have small children at that time. Anyway, I was started on Geevec and it seemed ok and worked for about 12 months or so. I really hate taking all the meds back since my WLS I have to chew them up and it's pretty nasty to say the least. Then off to Sprysal and I had and terrible time on that. A couple months later I was put on Tasigna. Real bad sideeffects on that one too. Now I'm back on gellevec and it's not working as well as it should as of So here's my question....Should I keep trying to play around with the same meds get myself ready for the BMT? The Army let my husband stay back this time,so he could take care of things and be there for me and I'm so grateful to the Army. But there are no promises about him staying back the next tour coming up. So, are there any one in the group having issues like myself because of WLS? Or can anyone suggest taking the pill different ways that may work? Until they come out with a injectable or liquid med. I'm pretty screwed at this point. Any suggestions would be appreciated. I'm grasping at straws right now I'm sure yall can understand. Hope everyone has a healthy a happy week. Colli from FL, but now in TN. WLS-5/17/05 CML-5/16/06 **************Looking for a car that's sporty, fun and fits in your budget? Read reviews on AOL Autos. (http://autos. <http://autos.aol.com/cars-BMW-128-2008/expert-review?ncid=aolaut00050000000 017> aol.com/cars-BMW-128-2008/expert-review?ncid=aolaut00050000000017 ) Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 5, 2008 Report Share Posted August 5, 2008 Colli, I was dx with CML 5-29-08.I also had wls (RNY)6-26-01 I then had a lapband placed over my RNY 12-5-06.I take Gleevec 100mg tablets as they are small and I can swallow them.The 400mg tablets I can not swallow.I take 4 100mg tablets daily.I have had good results so far.I just got a new DR and he may increase my dosage but I will stay take the small 100mg pills just more frequently.I was taking 1 every 4 hours but couldn't eat enough food with each dose so i now take 2- 100g tablets 2 times a day.Still having good results at a hematological level but will know more at next visit after my FISH test and BMB.Have you tried the 100mg pills? Is there another reason why you are chewing your meds? I swallow small pilss that will go down without getting stuck.I take ALOT of vits and mineral supplements.I get capsule,sublinguals or liquids whenever possible but I will also take small pills and NEVER chew pills..ugh think I would lose it..I was concerned about absorbing the meds at first but so far so good I may have to increase the dosage if I don't absorb enough maybe you will have to also.Nice to know there are others here with our wls concerns.I thought I was all alone with that..id you have much weight gain with treatment? SharonS In , Markay27@... wrote: > > Hello Group, > > It's been a while since I asked anything and I'm sorry,but I'm in great need > now. > Ok, I had open RNY weight loss surgery May 2005. The in May of 2006 I found > out I had CML. My husband is Army and was Red Crossed home due to how ill I > was and we have small children at that time. > Anyway, I was started on Geevec and it seemed ok and worked for about 12 > months or so. I really hate taking all the meds back since my WLS I have to chew > them up and it's pretty nasty to say the least. > Then off to Sprysal and I had and terrible time on that. A couple months > later I was put on Tasigna. Real bad sideeffects on that one too. Now I'm back > on gellevec and it's not working as well as it should as of > So here's my question....Should I keep trying to play around with the same > meds get myself ready for the BMT? > The Army let my husband stay back this time,so he could take care of things > and be there for me and > I'm so grateful to the Army. But there are no promises about him staying > back the next tour coming up. > So, are there any one in the group having issues like myself because of WLS? > Or can anyone suggest taking the pill different ways that may work? Until > they come out with a injectable or liquid med. I'm pretty screwed at this point. > Any suggestions would be appreciated. > I'm grasping at straws right now I'm sure yall can understand. > > Hope everyone has a healthy a happy week. > Colli from FL, but now in TN. > WLS-5/17/05 > CML-5/16/06 > > > > > **************Looking for a car that's sporty, fun and fits in your budget? > Read reviews on AOL Autos. > (http://autos.aol.com/cars-BMW-128-2008/expert-review? ncid=aolaut00050000000017 ) > > > Quote Link to comment Share on other sites More sharing options...
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