Guest guest Posted March 8, 2000 Report Share Posted March 8, 2000 hi im christi i have 7 month old twins jenna and jesse.i just noticed last week jenna head is badlt deformed. and have been crying ever since.i knew her head wasnt perfect but never seen that it was that bad.how could i not see this im her mother ? im very upset with my self.my mother said to me i thought you knew and just were not going to do snything about iy.anyway from behind her head is very lopesided and her ears are not in the same place.i even think it is effecting the shape of her 1 eye b/c it looks different too.i could use any info you have on how to get started with this i called my ped. today and we are going to have skull xrays done ,i live in pa from what i can see nearest clinic is n.c. i am willing to go there but how often do you have to go? do i need to insist for a refferal to a nerologist? or can ped. start this? and i have an hmo insurance, how do i go about getting them to pay? im sure these are all ? s you have answered before lol.. thank you for taking time to answer. i am soo glad i found this group, noone around me understand how upset i am , they just keep saying she is a girl she will grow hair 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, as they say, welcome to the group no one wants to belong to!!! I cannot help you with what to do, but there are others on this site that will pipe in and tell you how well they are doing on Tasigna. I have been on Gleevec, Sprycel and just left one trial and am waiting on another. This is a great group, and no matter what you want to know, someone is going to be able to help you. Sorry you're in this with all of us, but there are worse things to have than cml. Where do you live, and what doctor do you see? Good luck, 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 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'm a newbie too. What kind of side effects did you have with the Gleevec if you don't mind sharing? I just started it 2/20/09 and was doing well until this week then wham! I was down all day Monday, most of Tues., you get the picture. My problems are spinal pain and extreme fatigue. I hope this is a temporary side effect. Dx: 2/12/2009 Robin > > 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 13, 2009 Report Share Posted March 13, 2009 Hi bobby your name sounds so familier did you ever live in Greenhills in Ohio? I use to know some Doyle's from GreenHills. > 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 13, 2009 Report Share Posted March 13, 2009 hi carol welcome to the group too bad you had to find us this way but this is the greatest place to be: I'm not minimizing the side effect of gllevec , but my experience has been that in the begining it wz a nightmare beeing diagnosed alone is enough to send you into a wirlwind and then the new medicine will make the side effect worse I know the fear that you must be feeling, but for over a year I wz waiting to die as the side effect were brutal i thru up for months and finally after months i began to feel normal i also experienced a worsening of athsma but in the long run you will grow stronger and the symtoms somehow become much more bareable and you return to life agian hang in there the doctor will find something that will work well here you will find the courage to fight this war , I think we have the greatest and most inteligent wariors in any support group i'm deeply greatful to everyone on this list and though I wish all the news in the group were " I'm cured " everyone's individual experience has given me the stregnth to go on I hope it does that for you as well. aliza yaffa **************Worried about job security? Check out the 5 safest jobs in a recession. (http://jobs.aol.com/gallery/growing-job-industries?ncid=emlcntuscare00000002) Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 13, 2009 Report Share Posted March 13, 2009 No I have not lived there , in fact, do not know where it is. I have lived mostly in the Cleveland area. 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 From: walton.carol@... <no_reply > Subject: Re: [ ] hi new here Date: Friday, March 13, 2009, 10:33 AM Hi bobby your name sounds so familier did you ever live in Greenhills in Ohio? I use to know some Doyle's from GreenHills. > 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 March 14, 2009 Report Share Posted March 14, 2009 G'day Carol - ditto from me too, except I went from Glivec straight to Tasigna. Regards, from Down Under From: [mailto: ] On Behalf Of Sharon Teichera Sent: Friday, 13 March 2009 9:51 AM Subject: RE: [ ] Hi New Here 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:%40> [mailto: <mailto:%40> ] On Behalf Of suzzienovember Sent: Thursday, March 12, 2009 1:43 PM <mailto:%40> 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...
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.