bad scan, starting xeloda..

[Sherry in WV]

Just got back from the Onc office after my scans were read and my q three week dose of herceptin.
My liver tumor (After 1 year of being "stable") has doubled in size and I have 2 new tumors. I will continue on herceptin q 3 weeks, but will start Xeloda tomorrow. I have heard there are some terrible side effect with this drug. I am pretty down at the moment, but hope to bounce back soon.
Can anyone who has been on Xeloda fill me in?
Thanks
Sherry in WV

[Carlye]

I have never been on that drug but I will send many good thoughts and prayers your way, and hope this one works for you!! Keep fightinggggg and never give up hope that a cure is right around the corner!!

[Lyn]

Hi there, I had Xeloda, I had the maximum dosage to begin with and after about 2 weeks my feet got really sore, a bit like sunburn from the inside out, I spent one day off my feet and I found that as weird as it is I wore massage slilp ons which helped, my doc said I probably confused my nerve endings. I also had trouble with my thumbs the skin would split and you don't realise how much you use them until they hurt. This is called hand and foot syndrome. Keeping moisture up to your feet and hands right from the start does help, but as it comes from the inside out you may need to take the equivalent of your Tylenol paracemtmol. Hope this helps, mine was for skin mets and it worked.

Big Hugs from Lyn

[Chandi]

Hi Sherry !

Sorry to hear the incident. I am just about to start Herceptin in next Month.
On a routine scan a small tumor was seen in my liver in May 2003 and another one in December 2003. I stopped Tamoxifen that I was taking since 1994, and started Xeloda in December 2003. At this time I did not know about my her2 status to go for Herceptin. I had a severe pain in the chest after the 3rd dose and ended up in the emergency. After that incident I again re-started Xeloda and after the 4th cycle scan shown no significant changes. My onclogist told me that it was stable now and put me on Femara as well. I was given 2000 mg a day (1000 mg at breakfast and 1000 mg at dinner, It was given in a 21 day cycle - 14 days daily and 1 week pause) I have completed 6 cycles to 14th April and now waiting for the scan and to take Herceptin. I had severe pain in the chest almost on the 3rd day of the cycle, Loss of apptite is the main worry and generally you feel tired all the time like other chemo drug.
I was found to have pleural and pari cardial effusions after I started Xeloda, dont know it was from the disease or from the side effect of the drug.
Hope this help your question.
hugs

Chandi

[Velva]

Hi Sherry,
I have been on Xeloda since Feb. 10, 2004, also weekly Herceptin, & Arimidex for skin mets. I take 2000mg/day on 21 day cycle. The only side effects has been fatigue, and diarrhea on 1st cycle. Oh, my hair has thinned right at the crown.
No problems with hands or feet so far. My tumor has decreased from 51 to 32 & skin mets appear to be slowly improving.
Just keep your Onc informed on side effects, he can reduce the dosage if needed.
Keep us posted, Velva

[JaneP]

I'm on cycle 4 of Xeloda. I take 3500 per day for 14 out of 21 days. I have had no significant side effects except fatigue which is unrelated to blood counts. Those are normal. The fatigue is troublesome and seems worse week 2 of each cycle.

Good luck to you.
Jane

[Patty H]

I started on xeloda and herceptin just two and a half weeks ago. So far I have had no bad side affects. I take 3000 mgs a day for two weeks and this is my week off. I have been more tired this week then the weeks on. I will have blood work done Friday checking my white count. I will have a scan in around 3 weeks to see if it's working. But I feel better then I have on the other chemo's I tried. There doesn't seem to be very many of us on xeloda and herceptin both, so keep me informed how you do. Patty H

[Staci Gurleski]

Sorry to hear about your scan. Know that I am praying for you right now. Have you tried RFA- Radio Frequency Ablation. It works best on tumors 3cm or smaller and if you have 3 or less tumors.

[Sherry inWV]

Thank to all of you for your replies. I started Xeloda yesterday...300mg a day. The onc told me to take Vit B 6 and that may reduce or stop the hand food syndrom. I am taking my Dad's ashes back to Scotland for Burial in June and I want to be able to function. We are going to spend some time in the town he was born in. I am praying that my feet are ok to walk as I have some problems at the moment with my back and legs.
Thank you all for your prayers, the people on this board are so awesome! You always pick my spirits back up.
Love and Peace
Sherry

[Lolly]

Sherry,

I'm hoping your treatment goes well, and you kick some hiney...I don't think it's a given that you'll experience the hand-foot syndrome, so hopefully you'll be in good shape for your trek to Scotland.
What a beautiful country, or so I've read. I've always wanted to travel there. I'm sorry for the circumstances under which you are taking the trip, but your Dad's spirit will surely rest easy being back on the Highlands.

The golden hours on angel wings
Flew o'er me and my dearie;
For dear to me as light and life
Was my sweet Highland Mary.

- Robert Burns
"Highland Mary"

[Sandy]

Did you mean 3000 mgs. a day? I have never heard of such a low dose. I was told it goes by one's weight gosh, you must be small!! Hugs, Sandy

[Gail T]

Am on Herceptin and xeloda, On my third session of xeloda and Dr. had to reduce dose because of hand and foot problem. This is my third chemo and had been having lung drains every two weeks since I've been on xeloda no lung drains do have some pleural effusions around the heart but it was there before I started the Xeloda, going to a cardiologist to see if it can be drained. Maybe xeloda will work for you. Good Luck