› Forums › General Melanoma Community › Started ipi reinduction- almost a week after gamma knife
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triciad.
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- March 6, 2012 at 6:05 pm
Hi Everyone,
Hi Everyone,
I just wanted to know who started ipi after finishing gamma knife? I know Kyle is one of the people, so I wanted to know if there is anyone else? I havn't had any steroids and I don't want to take any as I know it could mess up the ipi. I might have to though, cause I do feel a bit of weakness in my right hand and it's quite possible it's the edema and I don't ever know if the ipi is causing inflammation. I'm really hoping that ipi this time around keeps any other tumours growing and thankfully, I'm going every 2 months.
Thanks,
Lisa
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- March 6, 2012 at 6:07 pm
Oops, for people like Linda, were your symptoms of edema be very much like other symptoms of brain mets (balance, etc. etc)?
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- March 6, 2012 at 10:54 pm
Lisa,
I am finally off of the steroids! Yeah!!! I still have some issues from I but haven't been off from a week yet. I had a little balance when walking from the first week that was diagnosed but I also had bleeding. The edema basically caused me problems with pressure in the head and problems with the double vision and colors coming from the eyes. I did have problems on one side of the body where it was numb but that would only occur a few times when I was trying to wean from the steroids and didn't know about the edema.
I know you are avoiding the steroids and I don't blame you. Draw a picture of your body. Twice a day write on your diagram and write if you are having any issues. At the end of the week compare each day. I know this sounds strange but the edema (at least for me) started to confuse the problems I was having and when. Of course I was already on the steroids and it was even confusing me more. If you have it written down you can see if you have any differences. Sometimes written in black and white helps you make some decisions.
When I was originally diagnosed they could see the edema already started before I was even started! While you have to be given the steroids if there are to many problems but now my worries have started about my next scan when all of my immune system has been gone. I have been improving but so much more for my body to heal.
Good luck! You know the last two responded so I'm sure these will also.
Linda
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- March 6, 2012 at 10:54 pm
Lisa,
I am finally off of the steroids! Yeah!!! I still have some issues from I but haven't been off from a week yet. I had a little balance when walking from the first week that was diagnosed but I also had bleeding. The edema basically caused me problems with pressure in the head and problems with the double vision and colors coming from the eyes. I did have problems on one side of the body where it was numb but that would only occur a few times when I was trying to wean from the steroids and didn't know about the edema.
I know you are avoiding the steroids and I don't blame you. Draw a picture of your body. Twice a day write on your diagram and write if you are having any issues. At the end of the week compare each day. I know this sounds strange but the edema (at least for me) started to confuse the problems I was having and when. Of course I was already on the steroids and it was even confusing me more. If you have it written down you can see if you have any differences. Sometimes written in black and white helps you make some decisions.
When I was originally diagnosed they could see the edema already started before I was even started! While you have to be given the steroids if there are to many problems but now my worries have started about my next scan when all of my immune system has been gone. I have been improving but so much more for my body to heal.
Good luck! You know the last two responded so I'm sure these will also.
Linda
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- March 6, 2012 at 10:54 pm
Lisa,
I am finally off of the steroids! Yeah!!! I still have some issues from I but haven't been off from a week yet. I had a little balance when walking from the first week that was diagnosed but I also had bleeding. The edema basically caused me problems with pressure in the head and problems with the double vision and colors coming from the eyes. I did have problems on one side of the body where it was numb but that would only occur a few times when I was trying to wean from the steroids and didn't know about the edema.
I know you are avoiding the steroids and I don't blame you. Draw a picture of your body. Twice a day write on your diagram and write if you are having any issues. At the end of the week compare each day. I know this sounds strange but the edema (at least for me) started to confuse the problems I was having and when. Of course I was already on the steroids and it was even confusing me more. If you have it written down you can see if you have any differences. Sometimes written in black and white helps you make some decisions.
When I was originally diagnosed they could see the edema already started before I was even started! While you have to be given the steroids if there are to many problems but now my worries have started about my next scan when all of my immune system has been gone. I have been improving but so much more for my body to heal.
Good luck! You know the last two responded so I'm sure these will also.
Linda
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