Guest guest Posted December 27, 2006 Report Share Posted December 27, 2006 tracy I'm on 400 gleevec one year now on the 23 .I was diagnosed with dry eyes before all this gleevec now I have what I call wet eyes,and some iteration.It makes it difficult to drive as the signs are fuzzy. [ ] Eye Edema I'm curious if anyone out there has had any experience with edema IN the eye. NOT the usual orbital edema that many of us experience, but a build up of fluid in the eye. I noticed my eye was " itchy " feeling, thought I may have something in it. When I went to check it out in the mirror I noticed what I thought was some fuzz or something. Turned out it was some of the very small capillaries in the eye (on the white part) spilling just over on to the edge of my eyelid. Then I noticed it was encapsulated by the outer layer of my eye. This all appeared to be a mucous build up from an irratant but it turns out I have developed what is most likely adema in my eye. They tell me there is nothing I can do to help this. Over the past few weeks I have developed MINOR edema in the lower part of my legs and around my ankles. This is accompanied by some pretty significant aches and pains (especially when pushed on), but strange enough this is only on the inside of my ankles. I have also noticed an increase in the pain in my hips and lower back -- I have a history with this pain as I have degenerative discs that I have been dealing with for many years. Drs have said this bone pain is not related to the Gleevec, however the Nurse Practioner said I should begin to feel some relief in this pain as my bone marrow is not as active since my body has rid itself of the overwhelming number of WBCs (381k) it was dealing with in the beginning. I have read enough from many of you and KNOW that bone pain and an increse in existing pain is a reality for CMLers on Gleevec -- Drs don't always know everything. Anyway -- thanks for any input you all may give. Hope everyone is having a nice holiday and will have a fun and safe new year. Tracey (in Atlanta) __________________________________________________ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 27, 2006 Report Share Posted December 27, 2006 I have experienced " eye bleeds " where your eye gets a bloody spot on it. It does not affect you vision, but looks pretty creepy. I have experienced swelling around my eyes and my vision is fuzzy. Glad to hear I am not the only one as I sometimes think I am imagining things. With warm regards, Matt ville, FL DX January of 2005 Gleevec Since May 2005 Father of 3 mtmaynor@... In a message dated 12/26/2006 8:32:46 P.M. Eastern Standard Time, paulorkay@... writes: tracy I'm on 400 gleevec one year now on the 23 .I was diagnosed with dry eyes before all this gleevec now I have what I call wet eyes,and some iteration.It makes it difficult to drive as the signs are fuzzy. ----- Original Message ---- From: Tracey Holden <_holdenmt@..._ (mailto:holdenmt@...) > _@..._ (mailto: ) Sent: Tuesday, December 26, 2006 10:42:50 AM Subject: [ ] Eye Edema I'm curious if anyone out there has had any experience with edema IN the eye. NOT the usual orbital edema that many of us experience, but a build up of fluid in the eye. I noticed my eye was " itchy " feeling, thought I may have something in it. When I went to check it out in the mirror I noticed what I thought was some fuzz or something. Turned out it was some of the very small capillaries in the eye (on the white part) spilling just over on to the edge of my eyelid. Then I noticed it was encapsulated by the outer layer of my eye. This all appeared to be a mucous build up from an irratant but it turns out I have developed what is most likely adema in my eye. They tell me there is nothing I can do to help this. Over the past few weeks I have developed MINOR edema in the lower part of my legs and around my ankles. This is accompanied by some pretty significant aches and pains (especially when pushed on), but strange enough this is only on the inside of my ankles. I have also noticed an increase in the pain in my hips and lower back -- I have a history with this pain as I have degenerative discs that I have been dealing with for many years. Drs have said this bone pain is not related to the Gleevec, however the Nurse Practioner said I should begin to feel some relief in this pain as my bone marrow is not as active since my body has rid itself of the overwhelming number of WBCs (381k) it was dealing with in the beginning. I have read enough from many of you and KNOW that bone pain and an increse in existing pain is a reality for CMLers on Gleevec -- Drs don't always know everything. Anyway -- thanks for any input you all may give. Hope everyone is having a nice holiday and will have a fun and safe new year. Tracey (in Atlanta) Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 27, 2006 Report Share Posted December 27, 2006 Hi , When I was on Gleevec I also had eye problems. I ended up with Papiladema which is swelling of my optic nerves. The cause of this was something called psuedotumor ceribrial or something like that. It was elevated spinal pressure. My onc. believes the Gleevec was causing this problem. I now am on Sprycel and have been on it for a month. You are not alone with your eye problems, I think they don't happen that often so they aren't heard about as much as some of the other side effects. Hope you are doing better, Chuck > > I'm curious if anyone out there has had any experience with edema IN > the eye. NOT the usual orbital edema that many of us experience, but > a build up of fluid in the eye. I noticed my eye was " itchy " > feeling, thought I may have something in it. When I went to check > it out in the mirror I noticed what I thought was some fuzz or > something. Turned out it was some of the very small capillaries in > the eye (on the white part) spilling just over on to the edge of my > eyelid. Then I noticed it was encapsulated by the outer layer of my > eye. This all appeared to be a mucous build up from an irratant but > it turns out I have developed what is most likely adema in my eye. > They tell me there is nothing I can do to help this. > > Over the past few weeks I have developed MINOR edema in the lower > part of my legs and around my ankles. This is accompanied by some > pretty significant aches and pains (especially when pushed on), but > strange enough this is only on the inside of my ankles. I have also > noticed an increase in the pain in my hips and lower back -- I have > a history with this pain as I have degenerative discs that I have > been dealing with for many years. Drs have said this bone pain is > not related to the Gleevec, however the Nurse Practioner said I > should begin to feel some relief in this pain as my bone marrow is > not as active since my body has rid itself of the overwhelming > number of WBCs (381k) it was dealing with in the beginning. I have > read enough from many of you and KNOW that bone pain and an increse > in existing pain is a reality for CMLers on Gleevec -- Drs don't > always know everything. > > Anyway -- thanks for any input you all may give. Hope everyone is > having a nice holiday and will have a fun and safe new year. > Tracey (in Atlanta) > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 29, 2006 Report Share Posted December 29, 2006 , I have been on Gleevec for 4 years and what you are experiencing is normal. My eyes and eyesight change on a daily basis, plus my lower legs will swell to the point where I have difficulty walking. The only thing that helps to any degree is diuretics, which I take twice a day. With Gleevec there is a build up of fluid in the eyes and legs. If you arent taking diuretics I suggest you try them, just make sure you also take potasium, as they will leach your body of it and this is worse than the fluid. Hope this helps. God bless, Denice Tracey Holden <holdenmt@...> wrote: I'm curious if anyone out there has had any experience with edema IN the eye. NOT the usual orbital edema that many of us experience, but a build up of fluid in the eye. I noticed my eye was " itchy " feeling, thought I may have something in it. When I went to check it out in the mirror I noticed what I thought was some fuzz or something. Turned out it was some of the very small capillaries in the eye (on the white part) spilling just over on to the edge of my eyelid. Then I noticed it was encapsulated by the outer layer of my eye. This all appeared to be a mucous build up from an irratant but it turns out I have developed what is most likely adema in my eye. They tell me there is nothing I can do to help this. Over the past few weeks I have developed MINOR edema in the lower part of my legs and around my ankles. This is accompanied by some pretty significant aches and pains (especially when pushed on), but strange enough this is only on the inside of my ankles. I have also noticed an increase in the pain in my hips and lower back -- I have a history with this pain as I have degenerative discs that I have been dealing with for many years. Drs have said this bone pain is not related to the Gleevec, however the Nurse Practioner said I should begin to feel some relief in this pain as my bone marrow is not as active since my body has rid itself of the overwhelming number of WBCs (381k) it was dealing with in the beginning. I have read enough from many of you and KNOW that bone pain and an increse in existing pain is a reality for CMLers on Gleevec -- Drs don't always know everything. Anyway -- thanks for any input you all may give. Hope everyone is having a nice holiday and will have a fun and safe new year. Tracey (in Atlanta) __________________________________________________ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 29, 2006 Report Share Posted December 29, 2006 I so much appreciate everyone's advice on these matters...I'm sure living with the effects of gleevec without such wonderful contracts would be very difficult indeed. Tell me, are any of these symptoms of CML...which are symptoms and which are side effects? Thanks, Margaret denice landry <daiseymillertoo@...> wrote: , I have been on Gleevec for 4 years and what you are experiencing is normal. My eyes and eyesight change on a daily basis, plus my lower legs will swell to the point where I have difficulty walking. The only thing that helps to any degree is diuretics, which I take twice a day. With Gleevec there is a build up of fluid in the eyes and legs. If you arent taking diuretics I suggest you try them, just make sure you also take potasium, as they will leach your body of it and this is worse than the fluid. Hope this helps. God bless, Denice Tracey Holden <holdenmt@...> wrote: I'm curious if anyone out there has had any experience with edema IN the eye. NOT the usual orbital edema that many of us experience, but a build up of fluid in the eye. I noticed my eye was " itchy " feeling, thought I may have something in it. When I went to check it out in the mirror I noticed what I thought was some fuzz or something. Turned out it was some of the very small capillaries in the eye (on the white part) spilling just over on to the edge of my eyelid. Then I noticed it was encapsulated by the outer layer of my eye. This all appeared to be a mucous build up from an irratant but it turns out I have developed what is most likely adema in my eye. They tell me there is nothing I can do to help this. Over the past few weeks I have developed MINOR edema in the lower part of my legs and around my ankles. This is accompanied by some pretty significant aches and pains (especially when pushed on), but strange enough this is only on the inside of my ankles. I have also noticed an increase in the pain in my hips and lower back -- I have a history with this pain as I have degenerative discs that I have been dealing with for many years. Drs have said this bone pain is not related to the Gleevec, however the Nurse Practioner said I should begin to feel some relief in this pain as my bone marrow is not as active since my body has rid itself of the overwhelming number of WBCs (381k) it was dealing with in the beginning. I have read enough from many of you and KNOW that bone pain and an increse in existing pain is a reality for CMLers on Gleevec -- Drs don't always know everything. Anyway -- thanks for any input you all may give. Hope everyone is having a nice holiday and will have a fun and safe new year. Tracey (in Atlanta) __________________________________________________ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 30, 2006 Report Share Posted December 30, 2006 gOOD QUESTION MAYBE 2 GRAINEY SKIN ABOUT KNEES,SCABBY, LIKE CRAMPS HAD THAT BEFORE GLEEVEC,WET EYES BUT I THINK THAT,S GLEEVEC. HAD DRY EYES BEFORE. ----- Original Message ---- From: Margaret Peake <mpraymond@...> __________________________________________________ Quote Link to comment Share on other sites More sharing options...
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