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loss of taste, vision in rt eye and hearing. Anyone else?
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loss of taste, vision in rt eye and hearing. Anyone else?

› Forums › General Melanoma Community › loss of taste, vision in rt eye and hearing. Anyone else?

  • Post
    • December 27, 2011 at 2:29 pm
    davidfromsingapore
    Participant

      I feel like I'm falling apart.  Started losing taste before my diagnosis – but now everything tastes bad – especially water.  Losing vision in right eye and have lots of pressure headaches above the eye.  Also, crickets and buzzing in both ears.  Anyone else?  Not sure if it's due to meds, surgery. radiation, or cancer (possible leptomeninigeal disease).  Please share you story with me.  

       

      Thank, David

      I feel like I'm falling apart.  Started losing taste before my diagnosis – but now everything tastes bad – especially water.  Losing vision in right eye and have lots of pressure headaches above the eye.  Also, crickets and buzzing in both ears.  Anyone else?  Not sure if it's due to meds, surgery. radiation, or cancer (possible leptomeninigeal disease).  Please share you story with me.  

       

      Thank, David

    Viewing 8 reply threads
    • Replies
        • December 28, 2011 at 2:05 am
        j.m.l.
        Participant

          I'm going to assume you are on ipi. I too have strange tastes, blurry vision, plenty of headaches and constant ear buzzing.

          I'm going to second eye dr. tom to get eye pressure meds. The first one didnt work at all. Steroids are being used to try to control the other symptoms. When I lower the ster. the symptoms get worse, so today we inc. the dose. Good luck to you

          I'm not the doctor, but steroids are supposed to control these problems. Ask your dr. about it.

            • December 28, 2011 at 11:03 pm
            davidfromsingapore
            Participant

              Thank yo so much for your reply.  I believe it is the same for me.  The steroids help with control pain and pressure in the head, but they come with a cost.  Wishing you good health in 2012. 

              • December 28, 2011 at 11:03 pm
              davidfromsingapore
              Participant

                Thank yo so much for your reply.  I believe it is the same for me.  The steroids help with control pain and pressure in the head, but they come with a cost.  Wishing you good health in 2012. 

                • December 28, 2011 at 11:03 pm
                davidfromsingapore
                Participant

                  Thank yo so much for your reply.  I believe it is the same for me.  The steroids help with control pain and pressure in the head, but they come with a cost.  Wishing you good health in 2012. 

                  • December 28, 2011 at 11:08 pm
                  davidfromsingapore
                  Participant

                    oh yes – and sorry, I am not on ipi.  I'm on Zelboraf.  Had 3 brain tumors – 2 removed via craniotomy and the other via novalis.  Had to be readmitted 4 times to hospital for severe headaches.  Not fun at all – especially when you are told by your doc that you might be able to go back to work in 6 weeks.  I wish!

                     

                    • December 28, 2011 at 11:08 pm
                    davidfromsingapore
                    Participant

                      oh yes – and sorry, I am not on ipi.  I'm on Zelboraf.  Had 3 brain tumors – 2 removed via craniotomy and the other via novalis.  Had to be readmitted 4 times to hospital for severe headaches.  Not fun at all – especially when you are told by your doc that you might be able to go back to work in 6 weeks.  I wish!

                       

                      • December 28, 2011 at 11:08 pm
                      davidfromsingapore
                      Participant

                        oh yes – and sorry, I am not on ipi.  I'm on Zelboraf.  Had 3 brain tumors – 2 removed via craniotomy and the other via novalis.  Had to be readmitted 4 times to hospital for severe headaches.  Not fun at all – especially when you are told by your doc that you might be able to go back to work in 6 weeks.  I wish!

                         

                      • December 28, 2011 at 2:05 am
                      j.m.l.
                      Participant

                        I'm going to assume you are on ipi. I too have strange tastes, blurry vision, plenty of headaches and constant ear buzzing.

                        I'm going to second eye dr. tom to get eye pressure meds. The first one didnt work at all. Steroids are being used to try to control the other symptoms. When I lower the ster. the symptoms get worse, so today we inc. the dose. Good luck to you

                        I'm not the doctor, but steroids are supposed to control these problems. Ask your dr. about it.

                        • December 28, 2011 at 2:05 am
                        j.m.l.
                        Participant

                          I'm going to assume you are on ipi. I too have strange tastes, blurry vision, plenty of headaches and constant ear buzzing.

                          I'm going to second eye dr. tom to get eye pressure meds. The first one didnt work at all. Steroids are being used to try to control the other symptoms. When I lower the ster. the symptoms get worse, so today we inc. the dose. Good luck to you

                          I'm not the doctor, but steroids are supposed to control these problems. Ask your dr. about it.

                          • December 28, 2011 at 3:39 am
                          lhaley
                          Participant

                            Steroids are wicked.  I am now at the point where I have weaned to 1mg and by Sat will be on .5mgs.  I have heard whistles, crickets ect. I've also had vision problems also from the steroids.   Originally they couldn't tell if my side effects were from the steroids or if I needed more of it.   I had no taste plus I couldn't tell if anything was hot or cold!

                            On the other hand they can't just pull you off of the steroids unless they make sure that you are not bleeding.  The main issue is you cannot just get off of the steroids without this taking a slow process unless you've been on them for a short period of time.  For me it's been hard to wean. My most problem is my blood pressure keeps going up as long as the muscle.  

                            Originally the second MRI was moved up because of a severe headache. If this had happened in the past I would have fought even harder for a 3rd MRI and would have been off of the steroids much quicker. I tried and they would not have ordered another one.  If this happens again I would have just paid it myself.  My oncologist moved it up a few weeks then the radiologist even wanted this one. 

                            Good luck,

                            Linda

                              • December 30, 2011 at 1:00 am
                              davidfromsingapore
                              Participant

                                HI Linda

                                Thanks for your reply.  Yes – steriods are a necessary evil for sure.  I can't wait to get off them, but every time I start weaning, the headaches put me back in the hospital.  I wish the best for you in 2012 and let's keep in touch with the crickets!

                                Sincerely, David

                                • December 30, 2011 at 1:00 am
                                davidfromsingapore
                                Participant

                                  HI Linda

                                  Thanks for your reply.  Yes – steriods are a necessary evil for sure.  I can't wait to get off them, but every time I start weaning, the headaches put me back in the hospital.  I wish the best for you in 2012 and let's keep in touch with the crickets!

                                  Sincerely, David

                                  • December 30, 2011 at 1:00 am
                                  davidfromsingapore
                                  Participant

                                    HI Linda

                                    Thanks for your reply.  Yes – steriods are a necessary evil for sure.  I can't wait to get off them, but every time I start weaning, the headaches put me back in the hospital.  I wish the best for you in 2012 and let's keep in touch with the crickets!

                                    Sincerely, David

                                  • December 28, 2011 at 3:39 am
                                  lhaley
                                  Participant

                                    Steroids are wicked.  I am now at the point where I have weaned to 1mg and by Sat will be on .5mgs.  I have heard whistles, crickets ect. I've also had vision problems also from the steroids.   Originally they couldn't tell if my side effects were from the steroids or if I needed more of it.   I had no taste plus I couldn't tell if anything was hot or cold!

                                    On the other hand they can't just pull you off of the steroids unless they make sure that you are not bleeding.  The main issue is you cannot just get off of the steroids without this taking a slow process unless you've been on them for a short period of time.  For me it's been hard to wean. My most problem is my blood pressure keeps going up as long as the muscle.  

                                    Originally the second MRI was moved up because of a severe headache. If this had happened in the past I would have fought even harder for a 3rd MRI and would have been off of the steroids much quicker. I tried and they would not have ordered another one.  If this happens again I would have just paid it myself.  My oncologist moved it up a few weeks then the radiologist even wanted this one. 

                                    Good luck,

                                    Linda

                                    • December 28, 2011 at 3:39 am
                                    lhaley
                                    Participant

                                      Steroids are wicked.  I am now at the point where I have weaned to 1mg and by Sat will be on .5mgs.  I have heard whistles, crickets ect. I've also had vision problems also from the steroids.   Originally they couldn't tell if my side effects were from the steroids or if I needed more of it.   I had no taste plus I couldn't tell if anything was hot or cold!

                                      On the other hand they can't just pull you off of the steroids unless they make sure that you are not bleeding.  The main issue is you cannot just get off of the steroids without this taking a slow process unless you've been on them for a short period of time.  For me it's been hard to wean. My most problem is my blood pressure keeps going up as long as the muscle.  

                                      Originally the second MRI was moved up because of a severe headache. If this had happened in the past I would have fought even harder for a 3rd MRI and would have been off of the steroids much quicker. I tried and they would not have ordered another one.  If this happens again I would have just paid it myself.  My oncologist moved it up a few weeks then the radiologist even wanted this one. 

                                      Good luck,

                                      Linda

                                      • December 28, 2011 at 9:00 am
                                      Frannie55
                                      Participant

                                        When I was on interferon (one month – high dose) everything tasted bad. Then the buzzing, chirping in ears started. This has lasted for two years. I had hearing tests done and nothing was found other than age related hearing loss. But I do find it odd that it started during interferon. Maybe this is another immune system side effect. I am curious how many of us have this but haven't thought to mention it.

                                          • December 30, 2011 at 1:07 am
                                          davidfromsingapore
                                          Participant

                                            In light of everythig else, these things seem small, but the overall discomfort and agitation they bring are a huge problem for me as far as returning to work.  I teach middle school media classes and as is the nature of the class – it is very noisy and active.  I usually thrive in this environment.  Now I feel like I need to work in a dark cave.  Yes – it would be good to keep in touch with these issues.  

                                            Here's to good health in 2012!

                                             

                                            David 

                                            • December 30, 2011 at 1:07 am
                                            davidfromsingapore
                                            Participant

                                              In light of everythig else, these things seem small, but the overall discomfort and agitation they bring are a huge problem for me as far as returning to work.  I teach middle school media classes and as is the nature of the class – it is very noisy and active.  I usually thrive in this environment.  Now I feel like I need to work in a dark cave.  Yes – it would be good to keep in touch with these issues.  

                                              Here's to good health in 2012!

                                               

                                              David 

                                              • December 30, 2011 at 1:07 am
                                              davidfromsingapore
                                              Participant

                                                In light of everythig else, these things seem small, but the overall discomfort and agitation they bring are a huge problem for me as far as returning to work.  I teach middle school media classes and as is the nature of the class – it is very noisy and active.  I usually thrive in this environment.  Now I feel like I need to work in a dark cave.  Yes – it would be good to keep in touch with these issues.  

                                                Here's to good health in 2012!

                                                 

                                                David 

                                              • December 28, 2011 at 9:00 am
                                              Frannie55
                                              Participant

                                                When I was on interferon (one month – high dose) everything tasted bad. Then the buzzing, chirping in ears started. This has lasted for two years. I had hearing tests done and nothing was found other than age related hearing loss. But I do find it odd that it started during interferon. Maybe this is another immune system side effect. I am curious how many of us have this but haven't thought to mention it.

                                                • December 28, 2011 at 9:00 am
                                                Frannie55
                                                Participant

                                                  When I was on interferon (one month – high dose) everything tasted bad. Then the buzzing, chirping in ears started. This has lasted for two years. I had hearing tests done and nothing was found other than age related hearing loss. But I do find it odd that it started during interferon. Maybe this is another immune system side effect. I am curious how many of us have this but haven't thought to mention it.

                                              Viewing 8 reply threads
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