Xeloda, Scared please help!

[Taffy]

Hi ladies!

Just to give you a brief history .....

I was diagnosed with bc in my right breast four years ago and had a mastectomy, chemo and rads. All was well until two years ago when I developed a new primary in my other breast. It was misdiagnosed for months and by the time they got round to doing something it had affected the skin of the breast (though it's not IBC). I am Stage 111c.

I was given Taxotere followed by Herceptin and the tumour disappeared. My last mammo showed no sign of cancer in that breast! As you can imagine, I was so relieved. I even did a dance around my kitchen! All that remains are three tiny nodules on my skin at the side of my breast (where the cleavage would be if I had one!) which my onc says are dead cells. He says I've had a complete clinical response to treatment. However, as I worry about the nodules (inspecting them everyday!) he has agreed to give me Capecitabine (sp?).

Now I am wondering just what I've let myself in for! I've heard all the bad stuff about this treatment, the diarrhoea, hand and foot, sore mouth ect, but the thing that scares me most is the thought of having a low immune system. When I had Taxotere I was in hospital for a week with neutropenic sepsis and I'm terrified that that might happen again.Can anyone tell me just how badly this stuff affects one's immune system? I'd be grateful for any advice before I start tomorrow.

love

Taffy

[pattyz]

Taffy,

The side effects of Xeloda are for the most part: DOSAGE DOSAGE DOSAGE related. Any sides can clear up quickly by stopping Xeloda. Then resume at a lower dose. Sometimes it takes a few trys to find what dosage will be the one for you.

IF the Xeloda is going to 'work', reducing the dosage will NOT be a factor. It will still do the job.

My sweet onc put me on a 'low' dose from the start: total of 2000mg per day. It has worked for me for the past 20 months without the horrors you are so worried about. The old height/weight table is really the basis for the problems of 'right' dosage of Xeloda.

Ok, that said: why would you want to continue treatment if you have had a 'complete response' to prior tx??? Give yourself a break!

Still here after Stage IIIb, 1/2000 and brain mets dx first time 9/2002 and currently.

best to you,
pattyz

[Sheila]

Taffy

I have been on Xeloda off and on for over a year, and other than the watery eyes, runny nose, and sore fingers and feet, I have found it very easy to take...I am on 2500 mg a day.....I can live with these minor side effects if it works for the mets!

[Lolly]

Taffy, I was on possibly the lowest Xeloda dose ever, 500 mg twice daily for a year for my stubborn lymph node mets. Had a partial response and then stable for a good amount of time; since then have moved on to other treatments. I had NO side effects on this low dose. Not recommending such a low dose for anyone else, just emphasizing what Patty and Sheila say, lower doses = fewer side effects.
If you're having second thoughts about more chemo at this point, with a complete response, and your concern is a few tiny nodules that your onc feels are dead cells, why not have one or all of them biopsied? My surgeon did that for me while performing a biopsy on a node, just zipped off a suspicious area of skin which did turn out to be malignant but as he excised the whole thing and I then went on chemo, it's never returned...Just an idea.

<3 Lolly

[Taffy]

Thank you, Patti, Sheila and Lolly for your words of encouragement. I have been given my tablets today and will start them tomorrow. I am supposed to take three 500mg tabs and one 150mg tablet twice a day. This seems rather a large dose but I suppose it varies due to height and weight. I am 5' 7'' and weigh 126lbs. Here's hoping I don't get too many side effects!

Once again ladies thank you for replying to my post.

love
Taffy

[Sheila]

Taffy
I take 3, 500mg in the morning, and 2, 500 mg at night. I am 5'6" and weigh 150#.....25 of that thanks to Herceptin! If the dose seems too much or too many side effects, they can decrease it with it working just as well....just remember to take it with some food in your tummy....it can cause terrible heartburn if you don't...even if its some crackers, pudding, jello...just something! I am hoping you will find it easy to take as I have.

[Taffy]

Thank you for the tips about the food, Sheila. You're a star! I have just taken my first dose after eating a bowl of porridge and some toast. When do the side effects usually kick in? Is it on the week off or do they start anytime? I guess I'm sitting here waiting for something to happen ..... !

love
Taffy

[Sheila]

Taffy

I seemed to feel a little more tired the week I was off....maybe all those pills! Also, remember to drink plenty of water, Xeloda made me thirsty so that wasn't a problem. I have to get my blood counts checked after being off a week...do you? So far mine have been fine. I think you will do great on this with little or no side effects...the hand foot syndrome seems to be cumulative, so more prevelant after taking it a while....my fingertips do crack and get sore, so I use plenty of Ahava lotion on feet and hands...it is made in Israel, but you can purchase it at www.deadseaminerals.com
....it is shipped from Israel....I tried many things and this is the only one that worked for me. I also wear comfy shoes...flip flops....they seem to work the best and make my feet feel good.
Hope this helps. One more thing, they do tell you if you develop diahrrea from it, call the Dr. as they will reduce the dosage...I never had any problem.

[Taffy]

Hi again, Sheila!


Well it has been a few hours since I swallowed my first dose of Xeloda and I am still here! No side effects so far but of course, I realise, it is early days yet. As you say, the week off may be the testing time. Like you, I am on for 14 days and then 7 off. Strange that you should mention thirst as I've been more thirsty today. I've taken plenty of fluids anyway.

Thank you for recommending the Ahava lotion, Sheila. I shall have to give that a try. At the moment I am using Compeed for prevention and also Neutragena Comfort Balm. I don't know if these are available in America though.

I'm so pleased that you are doing so well. You've been through a lot, looking at your signature, so I'm really happy that things are going well now. Keep it up, Sheila, I'm rooting for you!

love
Taffy

[hutchibk]

LOL, thanks for starting this thread Taffy - this will be me tomorrow or Monday after I take my first Xeloda... You asked all of my questions for me and now they are already answered!

[Adriana Mangus]

Hi Taffy: I have been on xeloda since January, other than skin discoloration, nothing bad has happened. However I read your posting about 14 days on and 7 off. My doctor and I agreed to do it 7 days on and 7 off.

This is based on a trial (@Memorial Sloan Hospital), This is my second week, so I still do not know if it's going to work. We decided to do it this way, because I was really tired the week I was off xeloda.

The dosage is 1,000 mg in the morning and 1,500 mg before bedtime-after dinner, actually; for a total of 2,500mg.

I will be seeing the Doc May 1, and will let you know the results of the CA2729 and the CT chest scan.

As you can see based on the responses you received from the sisters, you should be ok with your dosage and frequency. Please keep us posted.

Stay Positive. Best whises.

[Taffy]

Bhutchison and Adriana,

Thanks for replying. I am grateful to you Adriana for describing your side effects. I guess the tiredness and other things will kick in in my week off. I may well ask my onc if I can do it your way ... seven days on and seven off if the symptoms prove too much for me.

Yes, Adriana, please do let me know how things go for you with your tumour markers and chest scan. I'll be thinking of you and wishing you the best of results for your tests. My fingers are crossed for you and you'll be in my thoughts, Adriana.

bhutchinson, I guess we're going through this together then! I hope you and Adriana will stay in touch and we can compare symptoms!

Lots of love to you both,
Taffy

[hutchibk]

Looks like it's Monday for me... will definitely keep in touch. It's good to have chemo buddies!

[daughter]

Hi all
my mom just had her first cycle of xeloda 3 500mg in the morning and 4 500mg at night. She is feeling terrible, so much that she is thinking of stopping any treatment and trying microbiotics only. She has terrible headaches that won't let her sleep at night, she is exhausted all the time. Very minor nausea and some numbness in her fingers and her toes. On May 4th she is going to see
her doctor and I was suggesting she talks about reducing her dosage. They
wanted her to take navelbine with it but they don't have it on approved list
of meds so mom needed it to find it herself. I am not sure what to think of that.
Mom has lung mets and now liver mets too, after taxol and carboplatin treatment. She did get few herceptin treatments but after 2 months of fighting to get it and after my brother and I said we would pay for it. Now they won't give it to her any more, they said it wasn't working.
Anyone has headaches like that?
I would appreciate any help.

[Sheila]

It sounds like your Mom may need the dosage reduced and then the headaches will go away. It seems she is on 3500mg a day, and I am on 2500mg a day and don't get headaches, nausea or any of that/ is she taking right after eating and drinking plenty of water?

[daughter]

Hi Sheila,
Thanks for your response.
She is taking it twice a day about 30 minutes after breakfast and dinner.
She says she is drinking a lot of water and tea. It's been almost a week since
she stopped the first cycle of it and headaches haven't stopped. On the other
hand she is not having any other symptoms. Dryness or breaking nails or nausea.
She has hard time swallowing so many pills daily but she managed it somehow.
She has apt on the 4th, I am not sure if she should ask for a brain scan too.
She is really down lately, and doesn't have much energy at all.
I am going there at the end of the may for 3 weeks, I feel so bad I can't stay
longer. I wish she wasn't so far.
I hope none of you have the bad side effects, and just keep fighting.
Take care
Nina

[Sheila]

Nina

They did tell me to only take Tylenol for pain or headaches while on Xeloda...did not want me taking Advil or Aspirin....so do tell your mom...I hope her headaches stop...I am thinking of her.

[bailey]

Sheila - you sound like an angel. I am just going to be starting tykerb/xeloda next week - tykerb will be 5 pills/day at 250mg each and xeloda will be 6pills/day - 3 a.m. and 3pm at 500mg each. Any other recommendations?
Bailey