› Forums › General Melanoma Community › Bringing Miranda’s post to their own, outside of “The Undead” chain.
- This topic has 3 replies, 1 voice, and was last updated 13 years, 3 months ago by
dellriol.
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- November 11, 2012 at 10:59 pm
Hey everyone,
Re: Stage IV..Roll Call for the Undead Please
Miranda – (11/9/2012 – 9:11pm)
Hey everyone,
My husband was just very recently diagnosed with Stage IV Melanoma. Any information at all will be helpful. He is a fighter, thank God! But both of us are terrified beyond words. The doctors are very knowledgeable but we would love to hear from the actual day by day fighters that are on here.
Love and Hope and FIGHT to everyone here!!
Re: Stage IV..Roll Call for the Undead Please
Miranda – (11/10/2012 – 8:58pm)
I will have to look at all of the papers again. I'm not sure of all of the terminology yet. What I know as of now is that they are sending a biopsy sample out to be tested if the Mastastasic (spelling?) Melanoma is a mutation since he's only 42. If it is, they want to put him on a pill treatment called Zelboraf to shrink the spots he has. In addition to that, they want to use immunotherapy. They want to use as little radiation as possible and they don't want to use chemo at all. Has anyone been on/currently on Zelboraf? Is it effective? The docs told us that it's effective almost immediately but it usually stops working in about 6 months. Any suggestions?
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My latest response to them:(Jerry)
Basically any cancer is either/or both an oncoprotein overexpression and a DNA mutation. There are four types of treatment offered. Surgery, Chemotherapy, Immunology, & radiation. Generally radiation and normal chemotherapy are of limited value against Melanoma. The Immunologies (which attempt to jump start ones immune system to attack the cancer cells), approved to date are Interferon (Debated as to value), IL-2 and the Ippi (Yervoy), just approved. (both toxic with about a 20% chance of slowing melanoma down).
The newest in the chemo line of attack on melanoma is called Targeted Therapy (Chemo targeted at specific onco-overexpressions, DNA mutations and signaling paths) These are still chemo and are the most valid chemo to date against melanoma. Zelboraf is the first Targeted chemo to be FDA approved against Melanoma that has the BRAF onco-protein and DNA Mutation. Melanoma has numerous protiens and DNa mutations posssible. If one does not have the BRAF, then Zelboraf is useless. If one has the BRAF, then Zelboraf may be the fastest treatment to get a response. Zelboraf only attacks one of the melanoma signaling paths/mutations and no one knows how long any one individual will respond. Will the melanoma find a way around this blockade? In many cases it will, but not in all cases.
If one of the immunologies will work they are usually lookoed at as the first line of attack if one'stumor l oad is not too heavy. Yervoy may take a long time to show if it is having an effect and often something like Zelboraf can be used to reduce a heavy tumor load and to buy time for the Yervoy to be given as a followup to allow time for it to start working. (We are wanting to see the results of trials that develop a timing and co-dependence relationship betrween using these together in treatment planning.)
Is y'alls Oncologist a melanoma specialist? Even the specialist have problems keeping up on all that is now happeniing in the melanoma research. A general Oncologist cannot keep up on it all.
Yeah, the terminology is not fun to learn. (I never wantee to learn any! I didn't even know what an oncologists was until over 6 months after I was diagnosed with melanoma!)
Keep up the learning. As you noticed, many of us were told years ago that we would be dead within months. We learned and fought and some of us are still bugging the Oncologist's. (Wish they knew why!)
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- November 12, 2012 at 1:47 am
I was diagnosed stage 4 in February with brain mets and lung mets. Had a craniotomy to remove one brain tumor that had bled out. I started Zelboraf in April and my lung tumors have all but disappeared.My one remaining brain tumor is stable to slightly smaller. It's still working for me, and I'm still going strong. Wouldn't know I had anything wrong if the tests didn't tell me so. Others have done Z for as long as 3 years still getting positive results, but it doesn't work that long for everyone. I agree that you want to make sure you work with an oncologist who specializes in melanoma.
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- November 12, 2012 at 1:47 am
I was diagnosed stage 4 in February with brain mets and lung mets. Had a craniotomy to remove one brain tumor that had bled out. I started Zelboraf in April and my lung tumors have all but disappeared.My one remaining brain tumor is stable to slightly smaller. It's still working for me, and I'm still going strong. Wouldn't know I had anything wrong if the tests didn't tell me so. Others have done Z for as long as 3 years still getting positive results, but it doesn't work that long for everyone. I agree that you want to make sure you work with an oncologist who specializes in melanoma.
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- November 12, 2012 at 1:47 am
I was diagnosed stage 4 in February with brain mets and lung mets. Had a craniotomy to remove one brain tumor that had bled out. I started Zelboraf in April and my lung tumors have all but disappeared.My one remaining brain tumor is stable to slightly smaller. It's still working for me, and I'm still going strong. Wouldn't know I had anything wrong if the tests didn't tell me so. Others have done Z for as long as 3 years still getting positive results, but it doesn't work that long for everyone. I agree that you want to make sure you work with an oncologist who specializes in melanoma.
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Re: Stage IV..Roll Call for the Undead Please
Miranda – (11/9/2012 – 9:11pm)