Sutent for carcinoid cancer

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Sutent for carcinoid cancer

by designer on Fri Oct 29, 2010 06:52 PM

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I was diagnosed with NEC (pulmonary origin) 4 years a go with mets to the clavical area. I am on my 4th round of Sutent (37.5 mg), the only side effect being enormous leg pain. Is any one else on Sutent? I went to Dr. Woltering (Kenner, LA); he couldn't do anything for me - very disappointing

RE: Sutent for carcinoid cancer

by Lisa2220 on Sun Apr 17, 2011 11:58 PM

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I'm wondering how you are doing with the Sutent. My mom has carcinoid and her doctor wants her to try it. How did you find it helped you?

RE: Sutent for carcinoid cancer

by ccmckenna on Wed Apr 20, 2011 11:55 PM

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On Oct 29, 2010 6:52 PM designer wrote:

I was diagnosed with NEC (pulmonary origin) 4 years a go with mets to the clavical area. I am on my 4th round of Sutent (37.5 mg), the only side effect being enormous leg pain. Is any one else on Sutent? I went to Dr. Woltering (Kenner, LA); he couldn't do anything for me - very disappointing

I am sorry to hear about your diffculties. Especially that Dr. Wolter was not able to help you.

I have been going to a different website/mailig list that is much more active than this one.

LISTSERV.ACOR.ORG " target="_blank" rel="nofollow">http://www.lsoft.com/scripts/wl.exe?SL1=CARCINOID&H=LIST

Then go down to 

lists hosted at LISTSERV.ACOR.ORG .

and look up "carcinoid"

You should be able to rgister for the list, and you're in.

Dr. Woltering spends a lot of time answering questions, etc. from people on the site.

I realize that part won't be particulalry helpful, but there are a lot of people with a lot of experience who go there.

RE: Sutent for carcinoid cancer

by ccmckenna on Sun Apr 24, 2011 03:05 AM

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On Oct 29, 2010 6:52 PM designer wrote:

I was diagnosed with NEC (pulmonary origin) 4 years a go with mets to the clavical area. I am on my 4th round of Sutent (37.5 mg), the only side effect being enormous leg pain. Is any one else on Sutent? I went to Dr. Woltering (Kenner, LA); he couldn't do anything for me - very disappointing

I have found it difficult at times to list the URL for the additional carcinoid group I mentioned in my prior message.

What may work the best is to go to "Acor.org" then navigate through "Types of cancer" (do a search on "carcinoid") and then sign in from there.

 

C. McKenna

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