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Sandy H · 09-26-2005, 06:24 PM

Its hard to say what one should do. The docs aren't much help because most have never seen skin mets. They can be different with each person. I use the Miltex mostly in between chemo because it can dry and burn the skin causing yet more damage. While I am on chemo I give my skin a break and use a nice aloe moisturized cream, 100% natural no chemicals, twice a day. The xeloda did not work for me and navelbine didn't either. Taxol cleans them right up in a short time. As for the Miltex I will be surprised if your doctor can get it here that soon. When it gets in the U.S. and at customs the FDA will probably put a hold on it and it will be sent back within couple of weeks. My oncologist and I fought nearly 2 months to get it. I finally called my local congress who was a woman and she made some phone calls and I had it in two days!! My doctor was told if he didn't stop smuggling drugs in from Germany they would put him in jail! He told me this himself. Now, that is the compassionate care program in the U.S.!!! He was very angry with the whole process. He would make calls to the FDA, at the customs at the airport and they would not answer their phone, or return his calls. He would leave messages no reply. In this case I think you have to be the one to decide if you want to stay on long term or not. I understand there is no cure for these skin mets we try to keep them stable and yet keep our QOL. At least they are not life threatening. I go off and on Taxol because of the side effects. It will turn resistent at some point and the neuropathy will get to me then we will have to try other options. Please feel free to call me if you wish. The Miltex has helped me. If you can get it a supply will last you for months unless you are treating a large area. I checked on paying out of pocket but it is not cheap and still has to clear customs!! That is the hold up unless one can sneak it in somehow and not get caught in customs you got it made. Like they say its not a narcotic so why the big problem. Its the FDA guess, they want us on chemo. Good luck keep us updated, hugs, Sandy

09-26-2005, 06:24 PM	#10
Sandy H Senior Member Join Date: Feb 2005 Location: Norridgewock, Maine Posts: 778	Its hard to say what one should do. The docs aren't much help because most have never seen skin mets. They can be different with each person. I use the Miltex mostly in between chemo because it can dry and burn the skin causing yet more damage. While I am on chemo I give my skin a break and use a nice aloe moisturized cream, 100% natural no chemicals, twice a day. The xeloda did not work for me and navelbine didn't either. Taxol cleans them right up in a short time. As for the Miltex I will be surprised if your doctor can get it here that soon. When it gets in the U.S. and at customs the FDA will probably put a hold on it and it will be sent back within couple of weeks. My oncologist and I fought nearly 2 months to get it. I finally called my local congress who was a woman and she made some phone calls and I had it in two days!! My doctor was told if he didn't stop smuggling drugs in from Germany they would put him in jail! He told me this himself. Now, that is the compassionate care program in the U.S.!!! He was very angry with the whole process. He would make calls to the FDA, at the customs at the airport and they would not answer their phone, or return his calls. He would leave messages no reply. In this case I think you have to be the one to decide if you want to stay on long term or not. I understand there is no cure for these skin mets we try to keep them stable and yet keep our QOL. At least they are not life threatening. I go off and on Taxol because of the side effects. It will turn resistent at some point and the neuropathy will get to me then we will have to try other options. Please feel free to call me if you wish. The Miltex has helped me. If you can get it a supply will last you for months unless you are treating a large area. I checked on paying out of pocket but it is not cheap and still has to clear customs!! That is the hold up unless one can sneak it in somehow and not get caught in customs you got it made. Like they say its not a narcotic so why the big problem. Its the FDA guess, they want us on chemo. Good luck keep us updated, hugs, Sandy Last edited by Sandy H.; 09-26-2005 at 06:28 PM..