Xeloda ?

RhondaH · 04-07-2006, 04:14 PM

The lady I do Herceptin with has been on Xeloda and Herceptin for 3 years due to a recurrence to her sub clavicle (I believe) she was originally Stage 2 and recurred 5 mo after finishing chemo. She says that she has been NED all this time and that our onc has just kept her on it to keep the disease at bay. She is just NOW looking at going off of the Xeloda (due to cracked hands and feet) and I was curious, those of you that are or were on Xeloda, what was the longest your onc kept you on it once you reached NED? As I've mentioned before, he's VERY aggressive, I asked our onc nurse yesterday about an ECHO (as I only had 1 prior to starting Herceptin 8/15/05 and no others) and she said he doesn't do follow up ECHO's unless there is a concern (I've only got 6 more treatments until I'm done, so it doesn't matter at this point).

Rhonda

Yorkiegirl · 04-07-2006, 06:29 PM

Rhonda,

My Opinion only, but yes, I do think it does matter. I know my Onc has my echos done every 3 months. IF I'm not mistaken I think I have read somewhere that it states this needs to be.

Vicki

Lolly · 04-07-2006, 07:38 PM

Rhonda,
I've been on Xeloda for only two months now, but my onc had initially said as long as sympthoms are manageable the usual course (and I understood him to mean when dealing with metastatic disease) is to stay on it until progression. I believe the rational behind this is that with metastatic disease we have to assume that even when NED there is probably microscopic disease and possibly masses too small to be detected by scans, and if Xeloda is causing no adverse side effects it's a good saftey precaution. Ultimately, in that situation, it comes down to quality of life and patient preference. If I reach NED again, at this point I would love a chemo break and be willing to take my chances. But, it's an individual choice.
On the Echo, my onc has kept me on a 6 month schedule. He's been very firm about that.

<3 Lolly

Sherryg683 · 04-07-2006, 08:17 PM

I was on the Xeloda for my treatment and am so glad to get off it. I think its a great drug and works wonders but it was hard on me. My hands and feet right now are terrible. My Oncologist told me today that he has women have to be hospitalized because the skin and meat peeling off their hands and feet. This was in the beginning before they knew they had to mess with the dosage on it. I was taking 3,000mg a day and usually by the second week on it, my hands were all rashed and red. This time (my 5th series of treatment) my hands broke out and my feet were so bad I couldn't hardly walk,it happened right away, . I had to wear slippers into the clinic today,it was that painful. At times, I would reduce the dosage myself to control it but it didn't seem to help this go round. I think my system just had too much of it. I think Lolly said that she takes 1,000mg a day and that it has been beneficial to her. That dosage I think I could tolerate but the hand/foot thing hit me hard at the higher dosage. As far as ECHO, my doctor is doing mine every 4 months...sherryg683

Sheila · 04-08-2006, 01:04 PM

I started Xeloda this past week...2500 mg a day.1500mg in the AM and 1000mg at night....so far just tired!!!!!!!I am truly dragging....must be the magic in the Xeloda/ so I am hoping withh all the extra rest it is doing its thing...I am 14 days on, 7 off and I don't think the onc. is keeping me on it permanently...she said for a couple months/

Lolly · 04-08-2006, 03:44 PM

Sherry's right, I'm on 1000mg daily; 500mg am/pm. It's a low dose but I don't take any breaks. So far so good

Sheila, I was extra tired the first few weeks also, then as usual my system seemed to "adjust" and now I only have my usual tiredness, lol!

<3 Lolly