Guest guest Posted May 4, 2004 Report Share Posted May 4, 2004 Hi e.a. Could you tell me what kind of vision problems you are referring to? Nina also has severe BPES and her ptosis was operated on as late as 5 1/2 months. She too wears glasses since she was 1 year old. We patch her right eye to make her smaller left develop better (3h a day). Her vision problems are nystagmus, (probably slight) strabismus, probably amblyopia and probably no 3-d vision. We go to the hospital every 4 month for a check-up. They recently acknowledged she does use her two eyes together, hurray! Did it take Garrett's doctors years as well to make out the extent of the vision problems? Thanks for sharing, Bernice -----Oorspronkelijk bericht----- Van: Feichtner [mailto:mfeichtner@...] Verzonden: donderdag 22 april 2004 1:53 Aan: blepharophimosis Onderwerp: RE: blepharophimosis New to the site My son Garrett was 4 months old when he had his temporary surgery done. As said before, it usually depends on how much of the pupil is showing. Garrett couldn't even open his eyes for the first 3 wks he was born, and after that he could only open one eye at a time for a few weeks. When he could open both eyes you couldn't see hardly either of his pupils. My husband thinks that his vision problems are because they waited too long to do the temporary surgery. He's had glasses since he was 1 and gets a new prescription every 3-4 months. Thankfully he's had this current prescription for about 7 months. He is now 5 yrs. Old, 6 in July, and awaiting his ptosis surgery which has been cancelled twice now. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 28, 2009 Report Share Posted July 28, 2009 , I have had vision prolems since starting Gleevec..It gets worse if I miss a few days in a row of my Lasix..I now wear glasses and never had issues before Gleevec..I start Sprycel tonight and am hoping I don't have as many health issues/side effects with this drug as I have had with Gleevec..I am scared to start this new med as I dread nausea and have a lapband which vomiting can cause severe problems for me and my band health.I guess I just worry to much..I am afraid of the unknown with Gleevec I already know how crappy I will feel..lol Hope you feel better soon.. SharonS Did you see that free Medical Link I sent Yesterday..If I remember correctly you have no insurance so this may help you.. - In , " wendyphillips54 " <wendyphillips54@...> wrote: > > I went to the Dr again today for my check up and my wbc has gone back up and is now higher than it has ever been. It is 104,000. I have also been having some problems with my vision in my left eye but the Dr doesn't seem to think it has anything to do with the CML or Gleevec. I know that Gleevec can cause some vision problems but since it is only when I first wake up and only last for about 30 minutes, he isn't concerned. When I first wake up I can only see straight in front of me. It's like tunnel vision. Has anyone else had this problem taking Gleevec or is it just my vision and not related to the CML. I am not sure I trust this Dr, he just seems that he is really not concerned. > Blessings, > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 28, 2009 Report Share Posted July 28, 2009 Hi , Vision problems are well documented in leukemia, in fact, some of our members were diagnosed as a result of eye exams. See http://tinyurl.com/ly3psn for more information. If you aren't happy with the way your doctor is treating you, please find another one. Many of us have switched doctors, some more than once. Best of luck, Tracey > > I went to the Dr again today for my check up and my wbc has gone back up and is now higher than it has ever been. It is 104,000. I have also been having some problems with my vision in my left eye but the Dr doesn't seem to think it has anything to do with the CML or Gleevec. I know that Gleevec can cause some vision problems but since it is only when I first wake up and only last for about 30 minutes, he isn't concerned. When I first wake up I can only see straight in front of me. It's like tunnel vision. Has anyone else had this problem taking Gleevec or is it just my vision and not related to the CML. I am not sure I trust this Dr, he just seems that he is really not concerned. > Blessings, > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 28, 2009 Report Share Posted July 28, 2009 Hi Sharon, I saved the email you sent yesterday about the insurance but haven't read it yet. I will look at it in a bit. I have been wearing glasses since I was 12 years old but this thing with my left eye really worries me. I feel like I am going blind in my left eye but my Dr doesn't seem to be concerned at all about it. It's a scarey thing when you can't see well enough out of one eye to read something. I haven't been online as much lately because of it. Thanks so much for all the info! Blessings, > > I went to the Dr again today for my check up and my wbc has gone back up and is now higher than it has ever been. It is 104,000. I have also been having some problems with my vision in my left eye but the Dr doesn't seem to think it has anything to do with the CML or Gleevec. I know that Gleevec can cause some vision problems but since it is only when I first wake up and only last for about 30 minutes, he isn't concerned. When I first wake up I can only see straight in front of me. It's like tunnel vision. Has anyone else had this problem taking Gleevec or is it just my vision and not related to the CML. I am not sure I trust this Dr, he just seems that he is really not concerned. > Blessings, > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 28, 2009 Report Share Posted July 28, 2009 A detached retina possibly? My brother had the same symptom From: wendyphillips54 <wendyphillips54@...> Subject: [ ] Vision Problems Date: Monday, July 27, 2009, 3:34 PM I went to the Dr again today for my check up and my wbc has gone back up and is now higher than it has ever been. It is 104,000. I have also been having some problems with my vision in my left eye but the Dr doesn't seem to think it has anything to do with the CML or Gleevec. I know that Gleevec can cause some vision problems but since it is only when I first wake up and only last for about 30 minutes, he isn't concerned. When I first wake up I can only see straight in front of me. It's like tunnel vision. Has anyone else had this problem taking Gleevec or is it just my vision and not related to the CML. I am not sure I trust this Dr, he just seems that he is really not concerned. Blessings, Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 28, 2009 Report Share Posted July 28, 2009 Well, guess I need to go to the eye doctor then! From: wendyphillips54 <wendyphillips54> Subject: [ ] Vision Problems groups (DOT) com Date: Monday, July 27, 2009, 3:34 PM I went to the Dr again today for my check up and my wbc has gone back up and is now higher than it has ever been. It is 104,000. I have also been having some problems with my vision in my left eye but the Dr doesn't seem to think it has anything to do with the CML or Gleevec. I know that Gleevec can cause some vision problems but since it is only when I first wake up and only last for about 30 minutes, he isn't concerned. When I first wake up I can only see straight in front of me. It's like tunnel vision. Has anyone else had this problem taking Gleevec or is it just my vision and not related to the CML. I am not sure I trust this Dr, he just seems that he is really not concerned. Blessings, Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 28, 2009 Report Share Posted July 28, 2009 I feel the same way!! Eva From: serenitywon Sent: Tuesday, July 28, 2009 1:17 AM Subject: Re: [ ] RE: Vision Problems , I feel the exact same way..Hate to complain but feel like I always am.. SharonS In , <wendyphillips54@...> wrote: > > Yeah, I know what you mean...I feel like a train wreck. I told my husband to just take me out to the pasture and shoot me, lol. Of course I was joking but I do feel like it is something different every day. Thank God I have a wonderful husband. He is so good to me and he seems to never be aggravated because I stay so tired and sick all the time. I am just sick and tired of being sick and tired. If I get up feeling good then I usually overdo things and by the end of the day, I am really hurting and exhausted. I hate to complain all the time and I feel like that is what I am doing but I just want to know if what is going on with me is the same that everyone else has been through. > Blessings, > > > > > > From: suzzienovember <suzzienovember@...> > Subject: [ ] RE: Vision Problems > > Date: Monday, July 27, 2009, 11:03 PM > > > > > > > Hi : So sorry your having such problems. It just seems like its something everyday for you. I have had vision problems, but I cannot say its from Gleevec. I have had problems with my right eye getting blurry, dizzy spells, and eyebleeds in the right eye. The blurred vision and dizzy spells have been going on way before my Gleevec. > I think I would like another doctor too. Hope something gets better. > > > > > > > > > > > > > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 28, 2009 Report Share Posted July 28, 2009 , Just a thought. Are you taking your Gleevec every day and at the same time each day? If you skip days , especially in the beginning, it is not as effective. Also, what dose are you on? Maybe you need to be bumped up a bit, to 600 or 800 mg. On Jul 27, 2009, at 9:37 PM, wrote: > I just made 3 months on Gleevec and my wbc has been up and down like > a yo yo. This is the highest it has ever been and now I am just > scared because it's not working. I keep thinking, what if nothing > works for me! I know I should be positive but sometimes it's just > hard to be. I feel so bad all the time and I don't think that is > fair to my husband so that bothers me. Of course, he tells me that > he is here to take care of me no matter how sick I get and for me > not to worry about that or about him cause he can take care of > himself but that's not how it's supposed to be. I have not called > the leukemia society but then I didn't know there was such a thing. > I really liked the Dr that saw me in the hospital and he is partners > with the Dr I am seeing now but Dr was soooo much better > than this one is. He acted more concerned and seemed to care more > about my health. He also acted like he knew more about CML. He is a > little further away than the Dr I > am seeing now but it's ok, I don't mind a 30 minute drive to feel > more comfortable about the Dr knowing what he is talking about. > Blessings, > > > > > > I went to the Dr again today for my check up and my wbc has gone > > back up and is now higher than it has ever been. It is 104,000. I > > have also been having some problems with my vision in my left eye > > but the Dr doesn't seem to think it has anything to do with the CML > > or Gleevec. I know that Gleevec can cause some vision problems but > > since it is only when I first wake up and only last for about 30 > > minutes, he isn't concerned. When I first wake up I can only see > > straight in front of me. It's like tunnel vision. Has anyone else > > had this problem taking Gleevec or is it just my vision and not > > related to the CML. I am not sure I trust this Dr, he just seems > > that he is really not concerned. > > Blessings, > > > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 28, 2009 Report Share Posted July 28, 2009 FWIW, I have far fewer side effects on Sprycel than I did on Gleevec. From: serenitywon@... Date: Tue, 28 Jul 2009 00:47:25 +0000 Subject: [ ] Re: Vision Problems , I have had vision prolems since starting Gleevec..It gets worse if I miss a few days in a row of my Lasix..I now wear glasses and never had issues before Gleevec..I start Sprycel tonight and am hoping I don't have as many health issues/side effects with this drug as I have had with Gleevec..I am scared to start this new med as I dread nausea and have a lapband which vomiting can cause severe problems for me and my band health.I guess I just worry to much..I am afraid of the unknown with Gleevec I already know how crappy I will feel..lol Hope you feel better soon.. SharonS Did you see that free Medical Link I sent Yesterday..If I remember correctly you have no insurance so this may help you.. - In , " wendyphillips54 " <wendyphillips54@...> wrote: > > I went to the Dr again today for my check up and my wbc has gone back up and is now higher than it has ever been. It is 104,000. I have also been having some problems with my vision in my left eye but the Dr doesn't seem to think it has anything to do with the CML or Gleevec. I know that Gleevec can cause some vision problems but since it is only when I first wake up and only last for about 30 minutes, he isn't concerned. When I first wake up I can only see straight in front of me. It's like tunnel vision. Has anyone else had this problem taking Gleevec or is it just my vision and not related to the CML. I am not sure I trust this Dr, he just seems that he is really not concerned. > Blessings, > > _________________________________________________________________ Windows Live™ Hotmail®: Search, add, and share the web’s latest sports videos. Check it out. http://www.windowslive.com/Online/Hotmail/Campaign/QuickAdd?ocid=TXT_TAGLM_WL_QA\ _HM_sports_videos_072009 & cat=sports Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 28, 2009 Report Share Posted July 28, 2009 I am starting 100 mg Sprycel on Monday , I hope I have an easy time with it .. I am so tired. Fingers crossed and prayers for everyone!!! Eva -------------------------------------------------- From: " Rosen Lum " <rrosenlum@...> Sent: Tuesday, July 28, 2009 1:27 PM < > Subject: RE: [ ] Re: Vision Problems > > FWIW, I have far fewer side effects on Sprycel than I did on Gleevec. > > > From: serenitywon@... > Date: Tue, 28 Jul 2009 00:47:25 +0000 > Subject: [ ] Re: Vision Problems > > > > > > > > > > > > > > > > > > > > > > , > > I have had vision prolems since starting Gleevec..It gets worse if I > miss a few days in a row of my Lasix..I now wear glasses and never had > issues before Gleevec..I start Sprycel tonight and am hoping I don't have > as many health issues/side effects with this drug as I have had with > Gleevec..I am scared to start this new med as I dread nausea and have a > lapband which vomiting can cause severe problems for me and my band > health.I guess I just worry to much..I am afraid of the unknown with > Gleevec I already know how crappy I will feel..lol > > Hope you feel better soon.. > > SharonS Did you see that free Medical Link I sent Yesterday..If I > remember correctly you have no insurance so this may help you.. > > > > - In , " wendyphillips54 " <wendyphillips54@...> wrote: > >> > >> I went to the Dr again today for my check up and my wbc has gone back up >> and is now higher than it has ever been. It is 104,000. I have also been >> having some problems with my vision in my left eye but the Dr doesn't >> seem to think it has anything to do with the CML or Gleevec. I know that >> Gleevec can cause some vision problems but since it is only when I first >> wake up and only last for about 30 minutes, he isn't concerned. When I >> first wake up I can only see straight in front of me. It's like tunnel >> vision. Has anyone else had this problem taking Gleevec or is it just my >> vision and not related to the CML. I am not sure I trust this Dr, he just >> seems that he is really not concerned. > >> Blessings, > >> > >> > > > > > > > > > > > > > > > > > > > > > > > _________________________________________________________________ > Windows LiveT Hotmail®: Search, add, and share the web's latest sports > videos. Check it out. > http://www.windowslive.com/Online/Hotmail/Campaign/QuickAdd?ocid=TXT_TAGLM_WL_QA\ _HM_sports_videos_072009 & cat=sports > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 29, 2009 Report Share Posted July 29, 2009 LOL...Nope..No DR. told me that..But then they mostly spend the two minutes standing in the doorway with one foot in the other foot out and a hand on their palm pilot looking up my syptoms..lol Medical help isn't what is should be in my case but I also don't have options as many here do and just keep switching DR's.Sometimes we just have to take what we cab get and hope it's enough.. Hope everyone has a great week.. SharonS In , " Sharon Teichera " <onthewtr@...> wrote: > > I agree with Dory-I would not take my gleevec at the same time as the other > meds. I would have thought the Dr. would have told you that. > > Sharon T > > > > _____ > > From: [mailto: ] On Behalf Of Dory > Doggie > Sent: Tuesday, July 28, 2009 10:49 PM > > Subject: Re: [ ] Vision Problems > > > > > > , > > Maybe you should not take Gleevec with your other meds, should there be a > case > of drug interaction. Do you take your Gleevec with plenty of water too! > > Dory Doggie > > ________________________________ > From: <wendyphillips54@ <mailto:wendyphillips54%40> > > > groups (DOT) <mailto:%40> com > Sent: Tuesday, July 28, 2009 11:42:03 PM > Subject: Re: [ ] Vision Problems > > Yes, I take it every night along with all my other meds so I DON'T forget to > take it. I don't know why it's not working for me but I know it is not > because I am not taking it. My PA called me today and said they got the > Gleevec level back and it looks like I am not even taking the med. Wouldn't > that be like writing my own death sentence if I didn't take it. I am not > ready to die, I have grandchildren that I would like to see grow up! I guess > they are gonna do another Gleevec level on me one day. She was supposed to > call me back today but I haven't heard from her yet! > > > > > > > > I went to the Dr again today for my check up and my wbc has gone > > > back up and is now higher than it has ever been. It is 104,000. I > > > have also been having some problems with my vision in my left eye > > > but the Dr doesn't seem to think it has anything to do with the CML > > > or Gleevec. I know that Gleevec can cause some vision problems but > > > since it is only when I first wake up and only last for about 30 > > > minutes, he isn't concerned. When I first wake up I can only see > > > straight in front of me. It's like tunnel vision. Has anyone else > > > had this problem taking Gleevec or is it just my vision and not > > > related to the CML. I am not sure I trust this Dr, he just seems > > > that he is really not concerned. > > > Blessings, > > > > > > > > > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 30, 2009 Report Share Posted July 30, 2009 Nope they didn't tell me not to take them together. They just asked me what all I was taking and I told them. I guess everything I am taking is ok to take with the Gleevec or they would have told me to stop taking them together. Who knows? I am just really frustrated with my care. > > > I went to the Dr again today for my check up and my wbc has gone > > back up and is now higher than it has ever been. It is 104,000. I > > have also been having some problems with my vision in my left eye > > but the Dr doesn't seem to think it has anything to do with the CML > > or Gleevec. I know that Gleevec can cause some vision problems but > > since it is only when I first wake up and only last for about 30 > > minutes, he isn't concerned. When I first wake up I can only see > > straight in front of me. It's like tunnel vision. Has anyone else > > had this problem taking Gleevec or is it just my vision and not > > related to the CML. I am not sure I trust this Dr, he just seems > > that he is really not concerned. > > Blessings, > > > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 30, 2009 Report Share Posted July 30, 2009 I don't really know. I know they checked my Gleevec level and it came back to look like I don't even take the Gleevec. I don't wanna die so why would I not take it. I just feel like noboy believes me when I say I take it. I don't know why it's not showing up in my system but I do know that I take my meds every day! > > > > > I went to the Dr again today for my check up and my wbc has gone > > > back up and is now higher than it has ever been. It is 104,000. I > > > have also been having some problems with my vision in my left eye > > > but the Dr doesn't seem to think it has anything to do with the > CML > > > or Gleevec. I know that Gleevec can cause some vision problems but > > > since it is only when I first wake up and only last for about 30 > > > minutes, he isn't concerned. When I first wake up I can only see > > > straight in front of me. It's like tunnel vision. Has anyone else > > > had this problem taking Gleevec or is it just my vision and not > > > related to the CML. I am not sure I trust this Dr, he just seems > > > that he is really not concerned. > > > Blessings, > > > > > > > > > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 30, 2009 Report Share Posted July 30, 2009 If y ou don't mind me asking-what all are you taking? _____ From: [mailto: ] On Behalf Of Sent: Wednesday, July 29, 2009 9:59 PM Subject: RE: [ ] Vision Problems Nope they didn't tell me not to take them together. They just asked me what all I was taking and I told them. I guess everything I am taking is ok to take with the Gleevec or they would have told me to stop taking them together. Who knows? I am just really frustrated with my care. > > > I went to the Dr again today for my check up and my wbc has gone > > back up and is now higher than it has ever been. It is 104,000. I > > have also been having some problems with my vision in my left eye > > but the Dr doesn't seem to think it has anything to do with the CML > > or Gleevec. I know that Gleevec can cause some vision problems but > > since it is only when I first wake up and only last for about 30 > > minutes, he isn't concerned. When I first wake up I can only see > > straight in front of me. It's like tunnel vision. Has anyone else > > had this problem taking Gleevec or is it just my vision and not > > related to the CML. I am not sure I trust this Dr, he just seems > > that he is really not concerned. > > Blessings, > > > > > > > > > > Quote Link to comment Share on other sites More sharing options...
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