Xeloda -- flunctuating dosages over time?

[jojo]

Hi,

I have heard of Xeloda going lower on dosages, due to bothersome side effects, such as Hand / Foot Syndrome -- despite the fact that even 60% of the max dosage would still have the same effeciacy as the 100%.

Recently, I read one post (I forgot which website) that she started out on 4,000mg, got severe H?F, 3,500mg, H?F still lingering, so she took a brief break from Xeloda. Upon resuming the same chemo several days later, she started again on 2,500mg for 2 days, 3,000mg for the following 2 days, this pattern continued until 4,000mg. This time around, she didn't have any H/F.

Has anyone heard or experienced flunctuating your dosages of Xeloda over a period of time?

Also, when suspected failure on Xeloda, has anyone upped their dosage for a while to see if treatment has been more effective?

Speaking of which, my gut is telling me that Xeloda is not working for me, as I still could feel *new* nodes in the same supraclav node area, where I have been having active nodes for the past year. I mentioned that to my nurse practitioner as well as my onc, they just said that it was too early to tell, so let's meet in the next appt. So, I'll finally see them next week on Nov 3.

Such a CRAZY time, for me that is... I no longer like to put up with the waiting game!! :-( Anyhow, I am able to focus on things and do them during the day. Night time, though, is the hardest, I have been having insomnia; I usually hit bed around 3 or 4 am and wake up around 9-ish -- definitely not enough sleep hours! :-( This is not typical of my sleeping habits. I'd be a happy camper, if I went to sleep at 11-ish or 12midnight, and then got up around 7 or 8am.

If you remind me next month, I will send an update on the appt. I have a CT scan of torso on Nov 1, so I'll get the results when I go in for the appt on Nov 3.

Extra prayers would be much appreciated, thanks! :-)

[Cindi]

Jojo,

I can certainly empathize with your anxiety over whether the Xeloda is working. I was on Xeloda from May of this year until November, six months. I was put on 3000mg daily. I eventually (gradually) got the hand/foot syndrome thing. By the 5th month it was bothersome, but I still worked and did everything else I had to do. They never fluctuated the dosage. It definitely worked for me for awhile. I have skin mets. The mets had moved from the chest area down my left arm. The Xeloda (I also had oral Cytoxan on my "off week") cleared all the skin mets from my arm. But, I gradually got severe nerve pain down my arm and a new skin area appeared under my arm. So, the Xeloda had stopped being effective (PET proved it, still have mets to chest area). I am now on Gemzar and Avastin (no more Herceptin for now, flying without a parachute is how that feels). I have only had two treatments, but things seem stable. No marked changes.

I did ask that since the Xeloda worked for a while, would my Onc ever consider putting me back on it and she said that that is certainly in the realm of possiblities. So, for me, NO they did not "up" the dosage when it stopped working...they just switched me to their next treatment plan.

There is so little out there for the 1/3 of us Her2+++ who don't respond to Herceptin, it is uncharted territory. So, I will try the Avastin for awhile, but we are watching the trial on Herceptin and Avastin to see if there are any "early" results.

I don't imagine that a lot of what I wrote helps you too much, but hang in there. Your irregular sleeping can have a lot to do with your mood. They put me on a mild antidepressant (forgot name) just at night to help me sleep. WOW, did it ever! I nowtake 1/4 of a tablet, to be able to get OUT of bed after my 8 hours - to be able to get kids to school and get to work! Otherwise, I was konked out until Noon!

God Bless you, Jojo and I WILL keep you in my prayers.

Cindi.

P.S. Let me know if you want me to get the name of my little green pill that I use 1/4 of to sleep.

[Shell]

Jojo and Cindi-

I too am in the subset of her2neu+++ not apparently responsive to herceptin. I am currently on xeloda in the clinical trial w/ or w/out lapatinib. My dosage started out at 2500 m2, which based on my weight was 4300 mg/day. I got severe h/f syndrome, and as part of the trial my dosage was reduced 25%. This appears to be helping.

I've been on it since may, but did take a 3 week break at the end of the summer due o the h/f issues. I get scans after every 2 cycles, and results so far have been great...

I had read somewhere that the herceptin effect might not kick in until after 3 months - I've been on it twice, but only for 3 months. The first was preventetive w/ navelbine, but my first reoccurrence was only several months later, and after that, i was on herceptin w/ taxotere, but had a reoccurrence while on that...

jojo - why was it too early to tell re your supraclavicular nodes - how long have you been on the xeloda?

Shell

[Cindi]

Shell,

Thanks for your post. I have been watching any data that I can find on Lapatinib. I have had too many post treatments after my first recurrence (I think) to qualify for the trial you are in.

But, I am hopeful that HOPEFULLY lapatinib will meet FDA approval the beginning of this year. At least that is what some of the literature that I have read have said.

Keep us posted on your progress.

God Bless
Cindi

[jojo]

I have been on Xeloda 2,500mg / day, 2 weeks 1 week off, ever since Fri, Sept 2. My clinic just believes that it would be too early to tell about its effeciacy until after the 3rd cycle. I am currently hitting the 3rd cycle, hence the repeat CT scan on Tues. I am still on weekly Herceptin as well (indefinitely, since I am stage 4).

I was in a similar situation with some of the hormonals that I had been on last year. My nodes would increase just a tiny bit, and the clinic assured me that the effectiveness of the hormonals usually kick in until after 3rd month. THEN my nodes would start shrinking & also kept me stable until the hormonals stopped working, usually in the 6th month (in my case, that is).

On the other hand, while on Xeloda, I seem to have developed NEW nodes in that same supraclav area. This is the first I have ever experienced of which I could tell by feel to the touch.

Since I cannot do anything about this until the completion of my 3rd cycle, I simply try to keep myself busy. It is not too bad during the day time, I could see that keeping busy could keep my mind off the cancer stuff. Only the nights are the hardest, I couldn't keep myself busy, but just to shut my eyes for sleep! :-(

[Kim in CA]

Dear JoJo,


That Xeloda can be so hard to take and it's the pitts that you feel it may not be working. I will pray for good results on your upcoming scan. Hope you can find a way to get some good rest, you soooo need it. Sometimes I just take a Benadryl or two with a cup of warm milk when I'm feeling too antsy. It knocks me out, and if I don't take it too late in the evening I won't be groggy in the morning. Hang in there! Love, Kim

[mamacze]

Dear Sweet JoJo,

This seems like a rough time for you now; and you are so right to listen to your intuition; make sure you show the new nodes you feel to your doc. It is worrisome and it is no wonder you are having trouble with sleeping.
When I go for an important scan, I send an email out to my family and friends and ask them to pray for me...shoot, they always ask "what can I do" and praying is something they can do. Even when I go for my scan I look at the technician(s) and say "even if you are an atheist, please say a prayer for me" and they do! It makes a difference.
And so sweet angel; I will pray for a peaceful nights sleep for you and I will pray for God to hold you in his arms on November 1...you are due for a good one.
God bless; Love ,
Kim from CT