Guest guest Posted March 12, 2009 Report Share Posted March 12, 2009 Hi Carol: Welcome to the group. I think you will find all the support and information you need right here. You will get to know everyone, and always someone to help and listen. Sometimes you just need to vent to somebody who knows what its all about. Sorry your having such a hard time adjusting to medication. The fatigue seems to be a big one that everybody complains about. There is also Tasigna which a lot of people have been doing well on. There are other new treatments in trial. I am sure they will find the right treatment and dose for you. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 12, 2009 Report Share Posted March 12, 2009 hello bobby I live in ohio and I see Dr. Chua.I just want my life back.... Funny as it sounds but I hate not being able to do the things I once did. > From: walton.carol@... <no_reply > > Subject: [ ] hi new here > > Date: Thursday, March 12, 2009, 9:55 AM > > > > > > > > > > > > > hello my name is Carol I was told last july I had CML, and its been a nightmare ever since. I am not allowed to work due to all the side affects I get from Gleevec, my body couldnt handle the 400mg so I was on 200mg for 6 months and now found out its not working so they put me on Sprycel 50mg two at a time. and having bad side affects from it too. so does any one know whats after Sprycel if it doesnt work? I am up all night sick after I take it and so tired all I want to do is sleep all day. I hate feeling this way, glad I found this group to have others to talk to about CML. > > > > > > > > > > > > > > > > > > > > > > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 12, 2009 Report Share Posted March 12, 2009 Hi Carol, I too had terrible side effects on gleevec and then sprycel. I never felt good at all and that was for 4 years. Then a year ago they put me on Tasigna and I am a new person. I am normal!!! (whatever that is) I am my old self again. Not tired, not sick, no rashes, do stomach problems. I take 600mg every day-200 in the AM and 400 at night. I am sure they will probably put you on Tasigna. I was very afraid too but don't be. There are people on this site that have CML for 30 plus years. I have ehad it for ging on 5 years and I am 66 with 13 grand children very active person. I can do everything I used to do. Hang in there and be sure you ask us questions. Oh and by the way within 3 months of being on 600 I am PCRU with a 5 log reduction. (what ever that means) I know it means something good. Aloha Sharon _____ From: [mailto: ] On Behalf Of suzzienovember Sent: Thursday, March 12, 2009 1:43 PM Subject: [ ] Hi New Here Hi Carol: Welcome to the group. I think you will find all the support and information you need right here. You will get to know everyone, and always someone to help and listen. Sometimes you just need to vent to somebody who knows what its all about. Sorry your having such a hard time adjusting to medication. The fatigue seems to be a big one that everybody complains about. There is also Tasigna which a lot of people have been doing well on. There are other new treatments in trial. I am sure they will find the right treatment and dose for you. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 13, 2009 Report Share Posted March 13, 2009 Where in Ohio, are you near Brecksville? it is between Akron and cleveland. 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 From: walton.carol@... <no_reply > Subject: Re: [ ] hi new here Date: Thursday, March 12, 2009, 5:15 PM hello bobby I live in ohio and I see Dr. Chua.I just want my life back.... Funny as it sounds but I hate not being able to do the things I once did. > From: walton.carol@ ... <no_reply@group s.com> > Subject: [ ] hi new here > groups (DOT) com > Date: Thursday, March 12, 2009, 9:55 AM > > > > > > > > > > > > > hello my name is Carol I was told last july I had CML, and its been a nightmare ever since. I am not allowed to work due to all the side affects I get from Gleevec, my body couldnt handle the 400mg so I was on 200mg for 6 months and now found out its not working so they put me on Sprycel 50mg two at a time. and having bad side affects from it too. so does any one know whats after Sprycel if it doesnt work? I am up all night sick after I take it and so tired all I want to do is sleep all day. I hate feeling this way, glad I found this group to have others to talk to about CML. > > > > > > > > > > > > > > > > > > > > > > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 17, 2009 Report Share Posted May 17, 2009 Ginette, All of Dr G's patients work long distance with initial appointment and followed up with weekly updates and phone consults monthly. This antiviral therapy addressing immune dysfunction has done wonders for many of the kids on the protocol. Food allergy tests will confirm the GI problems and obviously you have already made the HHV6 connection. There is a clinic in upstate NY that you can work with as well. Bill ________________________________ From: htbows <cozmogrl@...> Sent: Sunday, May 17, 2009 11:15:10 AM Subject: Hi New Here Hi We just watched Dr G's presentation done in March 09 and found it amazing. We live on Long Island and our son is + for HHV6. Does Dr G would Dr G work with us as far as doing phone consultations? Do you think my son should start the protocol - although I am not sure what it is - is it Valtrex and Diflucan? My son is 4 and weighs 33 lbs - never vaccinated and dx HF PDD-NOS. Any help is greatly appreciated! !!!!!! Ginette Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 18, 2009 Report Share Posted May 18, 2009 I live in the South and he does do phone consults. However, keep in mind that most insurances do not pay. I am appealing my claim that was denied. My insurance will pay for his consults in the office but not on the phone. Well they only wanted to pay 36 on a 275 bill. I am requesting they up the allowance charges. From: htbows <cozmogrl@...> Subject: Hi New Here Date: Sunday, May 17, 2009, 10:15 AM Hi We just watched Dr G's presentation done in March 09 and found it amazing. We live on Long Island and our son is + for HHV6. Does Dr G would Dr G work with us as far as doing phone consultations? Do you think my son should start the protocol - although I am not sure what it is - is it Valtrex and Diflucan? My son is 4 and weighs 33 lbs - never vaccinated and dx HF PDD-NOS. Any help is greatly appreciated! !!!!!! Ginette 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.