Coincidence? Weird symptoms during Xeloda OFF week
 

Hmmm - I have noticed on each of my 3 Xeloda OFF weeks so far that I have the exact same weird symptoms each time that I don't have on my Xeloda ON weeks. (I am: Xeloda ON 2 weeks, OFF 1 week, and I am on Tykerb non-stop throughout).

Within the first 36 hours after stopping Xeloda for my OFF week is the only time that I get:

1. at least one day of the really bad pooterookis type of diarrhea, but it goes away with minimal effort (BRAT diet) in 20-24 hours...

2. one or two really bad and painful fever blisters on the tip of my tongue, but they go away usually in 4 days...

3. a sore throat in the very back of my sinuses... and sinus congestion. Twice it has disappeared in 48 hours, but once (3 weeks ago) it turned into a full blown sinus infection...

Any thoughts? These are totally tolerable side effects, so I'm not complaining. I just find it curious. It seems that I would have more side effects (which I have virtually none) when I am on both Ty/Xel at the same time, but when I drop the Xel for a week, my body freaks out.... LOL. I am guessing that it really likes Xeloda... no?

Similar Side Effects on Ty/Xe
 

Hi Brenda,

I just get the second one that you mention:

the sores on the tongue seems to start by the end of the second week on the Xeloda, and slowly clear up on my week off. I take it as a delayed side effect.
Hey, some people don't even get to do chemo and get blisters/sores!

My only serious problem is tiredness, extreme!
Since overall I feel quite well I try getting on with my life normally and by 6 or 7 at night I'm soo tired I feel quite overwhelmed. Cannot sleep though, cannot read, don't like stupid TV, somehow cannot finish my day. The only thing that seems to help is spending the morning resting, watching a movie or sg. but of course that makes me feel guilty.

To finish on a light note: It is hard to accept this new reduced me.

Fondly,

Odette

Brenda-

I always got the worst symptoms in my off week, so what you are sharing is not that surprising - good luck with things!

regards,

I Am So Angry And Scared
 

I also have those symptoms on the week off - that's why you take the week off - I think it would kill us to stay on and not give our systems a chance to renew.

I am still waiting for my pet results from Tuesday - will get them today, but they faxed over my markers from Tuesday and they are UP even more.

I am pissed - when I was on 5 ty and 4 xeloda the markers were dropping. On the 4 only dose they're raising.

What does that mean and what will he do for me? Should I go back up to 5 tykerb or should I even take the tykerb today? Stay on xeloda? He does not get in until 10:30 which is too late for me to make the tykerb decision.

I don't think this stuff is working. I am besides myself in fear and pissed off that I listened to my doctor. Is it possible that the pet/ct will show good results with the markers creeping?

Waiting is torture. Just sheer torture.

Markers may not be true indicators
 

Flori,

remember markers can be relevant, but they can be off too as I understand the research about them.
I fully believe you can still have good PET results!
Your question is whether to take 4 or 5 Tykerb today?
I wish I knew the answer.

Hope and pray for good results!
Please let us know!

Fondly,

Odette

Flori:

When I first began treatment for liver mets in 04, the CA 27-29 began to rise, however the ct scan showed the tumors shrinking. From what I understand, dissolving tumors can cause the TM's to increase as the body begins to process dead cancer cells.

Discuss it with your onc., when are you scheduled to have more scans? And are you feeling better physically? How you feel is also an important part of the decision making.

I hope that your T/X is blasting those cancer cells away and you will see a drop in TM's in the future.

i'm with ya
 

Hi Brenda, I am the same way. When I was on xeloda 5 years ago and this time around the side effects on my off week could get more severe for a bit and, of course, by the time I was to start the next round, I'd be feeling pretty darn good. My mouth sores and hand/foot will often worsen during the first few off days. My little bit of fatigue that I have will, however, improve during the off week and I try to really focus on that goodness. So adding to the comments of others, I don't think this is really unusual, just kind of dumb.

Thinking of you a lot.

Thanks ladies. So I'm not as weird as I think I am. Good.
Hi Joy! I've wondered how you are. Have you been OK?