› Forums › General Melanoma Community › 3.5 months off ZEL, still NED but eye issues
- This topic has 3 replies, 1 voice, and was last updated 9 years, 11 months ago by tcell.
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- May 6, 2014 at 7:38 am
Hello all,
A liitle recap on my situation:
– diagnosed Stage IV feb 2009 with many body mets (brain clear).
– treated over 5 years (3 chemos, InF, IPI, Zel, a few surgeries).
– 2 years on Zelboraf+surgery finally made me NED as of May 2013.
– Sarcoidosis (on skin) developped under Zel and was controlled by corticoids.
– Because of severe uveitis, oncs dared stop Zelboraf in January 2014, as I was seeing everything blurred and could lose eyesight. Had injection of kenacort in right eye and drops in the left. Eyesight recovered.
– Since then, the right eye developped drooping eyelid and over-dilated pupilla (called ptosis and mydriasis in medical terms). The eyelid problem could be caused by a device used to keep open the eyelid during the injection in the eye, which could have strained the muscle. The mydriasis is still unexplained – checks were done by docs to eliminate worst possible causes.
– Being allowed to stop Zel was a relief…for digestion, energy levels, skin and hair, etc.. but I now have a strange gaze and disymetrical look and many scars to remind me of melanoma if I ever was to forget it.– Apart from that, everything stays all clear in last brain and body scans!
Keeping fingers crossed….
Beatrice
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- May 6, 2014 at 4:02 pm
Hi Beatrice,
from your nickname I gather you are also from Europe. Your story seems very encouraging to me who was just diagnosed a few months ago with stage IV. I am being treated at the Vienna university hosptial.
I am taking Tafinlar and Mekinist at th moment. Would this combination also be an option for you once you need it? It is supposed to have less side effects.
I hope, however, that you are not going to need it soon and that you stay NED for a very long time! I hope I can also ever get that far.
Who treats you in Paris?
All the best,
Chris
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- May 6, 2014 at 4:02 pm
Hi Beatrice,
from your nickname I gather you are also from Europe. Your story seems very encouraging to me who was just diagnosed a few months ago with stage IV. I am being treated at the Vienna university hosptial.
I am taking Tafinlar and Mekinist at th moment. Would this combination also be an option for you once you need it? It is supposed to have less side effects.
I hope, however, that you are not going to need it soon and that you stay NED for a very long time! I hope I can also ever get that far.
Who treats you in Paris?
All the best,
Chris
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- May 6, 2014 at 4:02 pm
Hi Beatrice,
from your nickname I gather you are also from Europe. Your story seems very encouraging to me who was just diagnosed a few months ago with stage IV. I am being treated at the Vienna university hosptial.
I am taking Tafinlar and Mekinist at th moment. Would this combination also be an option for you once you need it? It is supposed to have less side effects.
I hope, however, that you are not going to need it soon and that you stay NED for a very long time! I hope I can also ever get that far.
Who treats you in Paris?
All the best,
Chris
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