› Forums › General Melanoma Community › 7mos. post HD IL-2, neuropathy
- This topic has 15 replies, 5 voices, and was last updated 12 years, 2 months ago by
melissa ann.
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- February 11, 2012 at 6:09 pm
Posting this for responses from other IL 2 warriors as well as putting this post out there for any future searches someone might need.
I am now 8mos. out from HD IL-2 treatment (4 hosp. stays, 2 courses) and as of last CT scan (12-9) , still responding. Most disease has either disappeared or shrunk 80% or so. So not really a complete responder as of yet, but hopeful I can get there! Not complaining either. Next scan in early April.
Posting this for responses from other IL 2 warriors as well as putting this post out there for any future searches someone might need.
I am now 8mos. out from HD IL-2 treatment (4 hosp. stays, 2 courses) and as of last CT scan (12-9) , still responding. Most disease has either disappeared or shrunk 80% or so. So not really a complete responder as of yet, but hopeful I can get there! Not complaining either. Next scan in early April.
In the meantime, I developed neuropathy in both hands and feet. In Nov. I also developed tinnitus (ear ringing constant). Dr. tells me these are side affects from the systemic treatment and it means my immune system is still reved up. Anyone else experience the same types of things? ( It's always comforting to know you are not the only one, ya know?) Dr. also says it could be life long issues (not complaining again), just wondering if others were told the same?
Do auto immune responses normally show up so long after treatment? Anyone know how long your immune system keeps fighting without a little extra help (other treatment)? I still don't quite understand how this cancer responds or quits responding, etc….maybe none of us do (except maybe JimmyB, *smile*). Dr. is SO confident yet I sitll walk on shards of glass.
I read and pray and support silently each and every one of you here, everyday. I am just not a poster : (. Drives me nuts.
Karin
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- February 11, 2012 at 7:20 pm
Glad and very HAPPY you are responding quite well.I am also a fighter in this war.I take Zelboraf & that is working .On that treatment there are different side effects.A price we pay for Gods gift of life.Like you I pray for us all.
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- February 11, 2012 at 7:20 pm
Glad and very HAPPY you are responding quite well.I am also a fighter in this war.I take Zelboraf & that is working .On that treatment there are different side effects.A price we pay for Gods gift of life.Like you I pray for us all.
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- February 11, 2012 at 7:20 pm
Glad and very HAPPY you are responding quite well.I am also a fighter in this war.I take Zelboraf & that is working .On that treatment there are different side effects.A price we pay for Gods gift of life.Like you I pray for us all.
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- February 11, 2012 at 7:34 pm
Karin, you state:
"Do auto immune responses normally show up so long after treatment? Anyone know how long your immune system keeps fighting without a little extra help (other treatment)? I still don't quite understand how this cancer responds or quits responding, etc….maybe none of us do (except maybe JimmyB, *smile*). Dr. is SO confident yet I sitll walk on shards of glass. "
I finnished my therapy back in 2007, I also have neuropathy in both hands and feet and ringing in my ears still. My immune system is still working on overdrive but with no autoimmune disease.
Best regards,
Jimmy B
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- February 11, 2012 at 7:34 pm
Karin, you state:
"Do auto immune responses normally show up so long after treatment? Anyone know how long your immune system keeps fighting without a little extra help (other treatment)? I still don't quite understand how this cancer responds or quits responding, etc….maybe none of us do (except maybe JimmyB, *smile*). Dr. is SO confident yet I sitll walk on shards of glass. "
I finnished my therapy back in 2007, I also have neuropathy in both hands and feet and ringing in my ears still. My immune system is still working on overdrive but with no autoimmune disease.
Best regards,
Jimmy B
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- February 11, 2012 at 7:34 pm
Karin, you state:
"Do auto immune responses normally show up so long after treatment? Anyone know how long your immune system keeps fighting without a little extra help (other treatment)? I still don't quite understand how this cancer responds or quits responding, etc….maybe none of us do (except maybe JimmyB, *smile*). Dr. is SO confident yet I sitll walk on shards of glass. "
I finnished my therapy back in 2007, I also have neuropathy in both hands and feet and ringing in my ears still. My immune system is still working on overdrive but with no autoimmune disease.
Best regards,
Jimmy B
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- February 12, 2012 at 10:00 am
Karen,
I'm new to the forum but read your comment about neuropathy and thought I'd let you know I developed neuropathy in my toes a couple years back when I was on Interferon treatments. Following appointments with numerologist and more blood work it was discovered I was low on B-12. So now I do take a B-12 supplement, daily when I remember, and although the neuropathy has not completly gone away it hasn't not gotten any worse.
Hope this helps.
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- February 12, 2012 at 10:00 am
Karen,
I'm new to the forum but read your comment about neuropathy and thought I'd let you know I developed neuropathy in my toes a couple years back when I was on Interferon treatments. Following appointments with numerologist and more blood work it was discovered I was low on B-12. So now I do take a B-12 supplement, daily when I remember, and although the neuropathy has not completly gone away it hasn't not gotten any worse.
Hope this helps.
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- February 12, 2012 at 10:00 am
Karen,
I'm new to the forum but read your comment about neuropathy and thought I'd let you know I developed neuropathy in my toes a couple years back when I was on Interferon treatments. Following appointments with numerologist and more blood work it was discovered I was low on B-12. So now I do take a B-12 supplement, daily when I remember, and although the neuropathy has not completly gone away it hasn't not gotten any worse.
Hope this helps.
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- February 13, 2012 at 1:38 am
Hi Karen, my husband also experienced neuropathy in his arms and hands after 2 courses of IL2. He was unable to finish IL2 because of the neuropathy. He finished 4 doses of IPI in October and as of right now is stable with some shrinkage in one of his two "spots." His neuropathy is still there but is better than 6 months ago. I am excited for you that you are responding and I wish the best for you! Melissa
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- February 13, 2012 at 1:38 am
Hi Karen, my husband also experienced neuropathy in his arms and hands after 2 courses of IL2. He was unable to finish IL2 because of the neuropathy. He finished 4 doses of IPI in October and as of right now is stable with some shrinkage in one of his two "spots." His neuropathy is still there but is better than 6 months ago. I am excited for you that you are responding and I wish the best for you! Melissa
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- February 13, 2012 at 1:38 am
Hi Karen, my husband also experienced neuropathy in his arms and hands after 2 courses of IL2. He was unable to finish IL2 because of the neuropathy. He finished 4 doses of IPI in October and as of right now is stable with some shrinkage in one of his two "spots." His neuropathy is still there but is better than 6 months ago. I am excited for you that you are responding and I wish the best for you! Melissa
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