xeloda long term

lindaw · 09-24-2005, 05:12 PM

Does anyone currently do this or know if it is possible. Last time I took it for my skin mets they disappeared in about 2 weeks. Four months after I stopped they reoccurred. I am taking it again and again they seem to be diappearing. Is it possible to stay on it or not. What do you think?
love
linda

al from Canada · 09-24-2005, 05:57 PM

Linda,
Sooner or later your body will develop a resistance to any drug but individual make-up and dosing all play a role. In short, there is no answer. My Linda has been on Xeloda for 6 months and she still has no side effects except depressed WBC which she take nepogen for. We will get a clearer picture after her PET scan on Oct. 5

Regards,
Al

lindaw · 09-24-2005, 06:09 PM

Thanks Al
Waht is her dosage.I read on another list of a women who is still on ti after 45 rounds.
love
linda

jojo · 09-24-2005, 10:56 PM

Linda W,

Let me get this right, as I am not sure what your schedule was exactly with Xeloda. Did you say that after 2 weeks, your skin mets disappeared and you just stopped taking Xeloda, then 4 months later, they recurred??

I am on Xeloda; I just began my 2nd cycle (2 weeks, 1 week off). So far, I have not gotten any side effects. Actually, I am on a lower dosage: 2500mg per day. My onc nurse told me: "I have seen people stay on a lower dose of Xeloda and they

lindaw · 09-25-2005, 04:02 PM

Dear Jojo

I did 6 rounds the first time and they disappeared after 2 weeks - but I continued until finfished. Then 4 months later they reappeared.
Now I have started again and they are fading again. I just wondered is it better to keep stopping waiting for recurrence and starting again or to just continue low dose.WQhat else did the onc nurse say - the line diappeared?

love
linda

Christine · 09-25-2005, 06:44 PM

Linda
I like the idea of a low dose to continue on Xeloda for a longer term. I heard the side effects can be hand/foot numbness, but don't know if it would work either, but it is a good question to ask your Onc. Also, there is a cream called Miltex made in Germany that is impossible to get to the U.S., BUT it works well on skin mets. I have permission from Sandra Henry, HER2+, Inflamatory BC patient to have you call here at her home in Maine if you are interested to know more about Miltex for skin mets. It is not FDA approved and therefore is illegal to sell in the states.
Her # is 207-634-4921. Hope his helps. hugs, Christine

lindaw · 09-25-2005, 08:34 PM

Thanks Christine

I have investigated Miltex with the help of Sandy and my Onc can get it within the week if I need but will have to pay. Apparently the compassionate thingy does not happen here.I am trying to get the whole rash under control and it is fading. I am just wondering which way to go after that -

- low dose xeloda until stops working ( some people report long time use)

- stop xeloda after 6 rounds and the use miltex if any thing else pops up.

What do you think? Thanks for everyone trying to help me here. I appreciate it.

Skin mets are a bit unusual and the Oncs aren't sure what to do.

love

linda

09-25-2005, 09:42 PM

Hi Linda, where are your skin mets? This time around I had (have?) it on my remaining breast with underlying mets, how big now no one knows, and after having so much heavy duty radiaiton my breast is still red so hard to tell if any different, I notice that if I press down on some areas it is tender? I am on Xeloda 1000mg per day with 100mg Cyclophospamide 14 days on then 14 day break, don't even know for how long, I too may have to be one of the long termers on Xeloda, I know another lady is staying on it forever but I can't rememeber where I found that.

Love & Hugs Lyn

lindaw · 09-26-2005, 03:45 PM

Dear Lyn

Just a red - although it is gradually turning pink - rash on my chest.I have had both breasts removed as had another new primary in the other breast in Feb. I think there are a few long term xeloda's on the IBC list. I occassionally go and look there.How do you find xeloda and what is that other drug again?Why have you combined them?

love

linda

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

jojo · 09-27-2005, 08:33 PM

How strange that the last line disappeared?... Anyhow, I was saying that my onc nurse told me that people on a lower dose of Xeloda fare very well on a longer term.

Just saw her today, and asked if I was on the lowest dosage. I am on 2,500 mg per day; she said no.

Into 2nd cycle now (2 weeks on, 1 week off). No side effects so far.

How are you doing? Any decisions made yet?