Guest guest Posted July 3, 2009 Report Share Posted July 3, 2009 I am so glad you are feeling better!! Sharon T _____ From: [mailto: ] On Behalf Of jackie schneider Sent: Friday, July 03, 2009 8:03 AM AsianCMLSupportGroup Subject: [ ] Latest update. Hi to all, I had labs done today. They are holding strong. wbc 3.3 hgb 10.4 plt 65,000 anc 1.85 I still have a rash on my face, back, stomach, and arms but it is being managed with OTC cortisone 1% cream, and medicated powder which also helps keep me dry in all this Houston heat. The joint pain is gone. I really feel quite good as long as I stay out of the sun and heat. I start cycle two July 13th, meet with Dr. Cortes, then hopefully be on our way home the 15th at the latest. I may have to have labs here on Day 2 and 3 also, but that's okay. This drug has given me good QOL. God Bless, Jackie S. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 3, 2009 Report Share Posted July 3, 2009 Hi Jackie, good to hear you have a good qol. Sorry about the rash. It is interesting how one drug will effect one person one way, and someone else be totally different. my labs this week were: wbc - 6.0 hgb - 10.5 plt - 171 neuts - 4.3 I feel great, no side effects at all, have a huge appetite and sleep like a log., I wish everyone could do this well on a drug, no matter which one. But it will be the long term that will decide if it works or not, so far, so good. Good luck to you, love, Bobby On Fri, Jul 3, 2009 at 11:03 AM, jackie schneider <jschneider008@...>wrote: > > > Hi to all, > > I had labs done today. They are holding strong. > > wbc 3.3 > hgb 10.4 > plt 65,000 > anc 1.85 > > I still have a rash on my face, back, stomach, and arms but it is being > managed with OTC cortisone 1% cream, and medicated powder which also helps > keep me dry in all this Houston heat. The joint pain is gone. I really feel > quite good as long as I stay out of the sun and heat. I start cycle two July > 13th, meet with Dr. Cortes, then hopefully be on our way home the 15th at > the latest. I may have to have labs here on Day 2 and 3 also, but that's > okay. This drug has given me good QOL. > > God Bless, > Jackie S. > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 3, 2009 Report Share Posted July 3, 2009 Hi Bobby, I know - re how drugs effect us differently - but I guess if we were all made the same it would be easy to treat us better. Then alot of scientist would be out of jobs ----domino effect. haha. Great to hear you are doing good!! God Bless, Jackie From: Bobby Doyle <rmcd1929@...> Subject: Re: [ ] Latest update. Date: Friday, July 3, 2009, 10:40 AM Hi Jackie, good to hear you have a good qol. Sorry about the rash. It is interesting how one drug will effect one person one way, and someone else be totally different. my labs this week were: wbc - 6.0 hgb - 10.5 plt - 171 neuts - 4.3 I feel great, no side effects at all, have a huge appetite and sleep like a log., I wish everyone could do this well on a drug, no matter which one. But it will be the long term that will decide if it works or not, so far, so good. Good luck to you, love, Bobby On Fri, Jul 3, 2009 at 11:03 AM, jackie schneider <jschneider008>wrote: > > > Hi to all, > > I had labs done today. They are holding strong. > > wbc 3.3 > hgb 10.4 > plt 65,000 > anc 1.85 > > I still have a rash on my face, back, stomach, and arms but it is being > managed with OTC cortisone 1% cream, and medicated powder which also helps > keep me dry in all this Houston heat. The joint pain is gone. I really feel > quite good as long as I stay out of the sun and heat. I start cycle two July > 13th, meet with Dr. Cortes, then hopefully be on our way home the 15th at > the latest. I may have to have labs here on Day 2 and 3 also, but that's > okay. This drug has given me good QOL. > > God Bless, > Jackie S. > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 3, 2009 Report Share Posted July 3, 2009 Hi Sharon Thank you! I appreciate your thoughtfulness, God Bless, Jackie From: Sharon Teichera <onthewtr@...> Subject: RE: [ ] Latest update. Date: Friday, July 3, 2009, 10:26 AM I am so glad you are feeling better!! Sharon T _____ From: groups (DOT) com [mailto:groups (DOT) com] On Behalf Of jackie schneider Sent: Friday, July 03, 2009 8:03 AM AsianCMLSupportGrou pgroups (DOT) com Subject: [ ] Latest update. Hi to all, I had labs done today. They are holding strong. wbc 3.3 hgb 10.4 plt 65,000 anc 1.85 I still have a rash on my face, back, stomach, and arms but it is being managed with OTC cortisone 1% cream, and medicated powder which also helps keep me dry in all this Houston heat. The joint pain is gone. I really feel quite good as long as I stay out of the sun and heat. I start cycle two July 13th, meet with Dr. Cortes, then hopefully be on our way home the 15th at the latest. I may have to have labs here on Day 2 and 3 also, but that's okay. This drug has given me good QOL. God Bless, Jackie S. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 5, 2009 Report Share Posted July 5, 2009 Jackie, I'm so glad your labs are holding strong. I'm sorry about the rash but it's good the joint pain is gone. I really hope this drug is going to work for you with minimal side effects. I've been praying for you and have been wondering about how you are doing. Hang in there. I know you will be glad to be able to go home. Will you continue in the trial at home? Take care, Patti S. > > Hi to all, > > I had labs done today. They are holding strong. > > wbc 3.3 > hgb 10.4 > plt 65,000 > anc 1.85 > > I still have a rash on my face, back, stomach, and arms but it is being managed with OTC cortisone 1% cream, and medicated powder which also helps keep me dry in all this Houston heat. The joint pain is gone. I really feel quite good as long as I stay out of the sun and heat. I start cycle two July 13th, meet with Dr. Cortes, then hopefully be on our way home the 15th at the latest. I may have to have labs here on Day 2 and 3 also, but that's okay. This drug has given me good QOL. > > God Bless, > Jackie S. > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 5, 2009 Report Share Posted July 5, 2009 Hi Jackie and Bobby, Glad to hear the two of you are doing well (except for poor Jackie's rash!). I'm doing fantastic too! I was super tired last night and slept 10 hours, but think I've been overdoing it because I feel so great. One bit of great news for me--the night soaks, err sweats, have completely stopped! My counts from last week: wbc - 4.9 rbc - 3.81 hgb - 13 plt - 229 neuts - 2.92 I love it so far! Hugs, Beth Re: [ ] Latest update. Hi Jackie, good to hear you have a good qol. Sorry about the rash. It is interesting how one drug will effect one person one way, and someone else be totally different. my labs this week were: wbc - 6.0 hgb - 10.5 plt - 171 neuts - 4.3 I feel great, no side effects at all, have a huge appetite and sleep like a log., I wish everyone could do this well on a drug, no matter which one. But it will be the long term that will decide if it works or not, so far, so good. Good luck to you, love, Bobby On Fri, Jul 3, 2009 at 11:03 AM, jackie schneider < jschneider008@... >wrote: > > > Hi to all, > > I had labs done today. They are holding strong. > > wbc 3.3 > hgb 10.4 > plt 65,000 > anc 1.85 > > I still have a rash on my face, back, stomach, and arms but it is being > managed with OTC cortisone 1% cream, and medicated powder which also helps > keep me dry in all this Houston heat. The joint pain is gone. I really feel > quite good as long as I stay out of the sun and heat. I start cycle two July > 13th, meet with Dr. Cortes, then hopefully be on our way home the 15th at > the latest. I may have to have labs here on Day 2 and 3 also, but that's > okay. This drug has given me good QOL. > > God Bless, > Jackie S. > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 5, 2009 Report Share Posted July 5, 2009 Hi Beth, that is great! The only side effect I have is not an adverse side effect, it is a good one - I sleep like a rock! I doubt I am in bed 5 min. and I am asleep. No edema, no diarrhea, no rash, no nausea, are all great pluses also! My appetite is huge, too huge in fact, and I am praying that these wonderful counts stay as good as they are. I'm so glad you and Jackie are doing so well, hope we all stay that way - forever!!! 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: bethgalliart@... <bethgalliart@...> Subject: Re: [ ] Latest update. Date: Sunday, July 5, 2009, 8:37 AM Hi Jackie and Bobby, Glad to hear the two of you are doing well (except for poor Jackie's rash!). I'm doing fantastic too! I was super tired last night and slept 10 hours, but think I've been overdoing it because I feel so great. One bit of great news for me--the night soaks, err sweats, have completely stopped! My counts from last week: wbc - 4.9 rbc - 3.81 hgb - 13 plt - 229 neuts - 2.92 I love it so far! Hugs, Beth Re: [ ] Latest update. Hi Jackie, good to hear you have a good qol. Sorry about the rash. It is interesting how one drug will effect one person one way, and someone else be totally different. my labs this week were: wbc - 6.0 hgb - 10.5 plt - 171 neuts - 4.3 I feel great, no side effects at all, have a huge appetite and sleep like a log., I wish everyone could do this well on a drug, no matter which one. But it will be the long term that will decide if it works or not, so far, so good. Good luck to you, love, Bobby On Fri, Jul 3, 2009 at 11:03 AM, jackie schneider < jschneider008 >wrote: > > > Hi to all, > > I had labs done today. They are holding strong. > > wbc 3.3 > hgb 10.4 > plt 65,000 > anc 1.85 > > I still have a rash on my face, back, stomach, and arms but it is being > managed with OTC cortisone 1% cream, and medicated powder which also helps > keep me dry in all this Houston heat. The joint pain is gone. I really feel > quite good as long as I stay out of the sun and heat. I start cycle two July > 13th, meet with Dr. Cortes, then hopefully be on our way home the 15th at > the latest. I may have to have labs here on Day 2 and 3 also, but that's > okay. This drug has given me good QOL. > > God Bless, > Jackie S. > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 5, 2009 Report Share Posted July 5, 2009 Hi Patti, It's good to hear from you. I will continue the trial but will have to come back to Houston for follow up. That will stink for awhile as it is every two weeks for a couple months. Yuck!!! How are you? Did you decide what you're going to do? Switch treatments or stay with the Sprycle. My parents and I had dinner with Rhonda the other night. It was really nice. The heat is still here so we don't go out very often. Hope you are doing well. God Bless, Jackie From: Patti Simbulan <psimbulan@...> Subject: [ ] Re: Latest update. Date: Saturday, July 4, 2009, 10:58 PM Jackie, I'm so glad your labs are holding strong. I'm sorry about the rash but it's good the joint pain is gone. I really hope this drug is going to work for you with minimal side effects. I've been praying for you and have been wondering about how you are doing. Hang in there. I know you will be glad to be able to go home. Will you continue in the trial at home? Take care, Patti S. > > Hi to all, > > I had labs done today. They are holding strong. > > wbc 3.3 > hgb 10.4 > plt 65,000 > anc 1.85 > > I still have a rash on my face, back, stomach, and arms but it is being managed with OTC cortisone 1% cream, and medicated powder which also helps keep me dry in all this Houston heat. The joint pain is gone. I really feel quite good as long as I stay out of the sun and heat. I start cycle two July 13th, meet with Dr. Cortes, then hopefully be on our way home the 15th at the latest. I may have to have labs here on Day 2 and 3 also, but that's okay. This drug has given me good QOL. > > God Bless, > Jackie S. > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 8, 2009 Report Share Posted July 8, 2009 Hi Bobby, I hear ya re the sleeping! And that is the best! :-) Re: [ ] Latest update. Hi Jackie, good to hear you have a good qol. Sorry about the rash. It is interesting how one drug will effect one person one way, and someone else be totally different. my labs this week were: wbc - 6.0 hgb - 10.5 plt - 171 neuts - 4.3 I feel great, no side effects at all, have a huge appetite and sleep like a log., I wish everyone could do this well on a drug, no matter which one. But it will be the long term that will decide if it works or not, so far, so good. Good luck to you, love, Bobby On Fri, Jul 3, 2009 at 11:03 AM, jackie schneider < jschneider008 >wrote: > > > Hi to all, > > I had labs done today. They are holding strong. > > wbc 3.3 > hgb 10.4 > plt 65,000 > anc 1.85 > > I still have a rash on my face, back, stomach, and arms but it is being > managed with OTC cortisone 1% cream, and medicated powder which also helps > keep me dry in all this Houston heat. The joint pain is gone. I really feel > quite good as long as I stay out of the sun and heat. I start cycle two July > 13th, meet with Dr. Cortes, then hopefully be on our way home the 15th at > the latest. I may have to have labs here on Day 2 and 3 also, but that's > okay. This drug has given me good QOL. > > God Bless, > Jackie S. > > Quote Link to comment Share on other sites More sharing options...
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