Are you taking Tykerb / Xeloda?

First and foremost, I "hope" everybody's treatment is working and going well. I know from experience as a caregiver that these two meds can be extremely hard on you. A week ago my wife started taking T/X (1250mg/3000mg). She developed extreme dehydration and diarrhea to the point of hospitalization. She has just finished radiation treatment of her spine (5 tumors within her spinal cord.  One arae being at the throat) Radiation has started causing her throat to be so sore that taking medication and food has been difficult and painful. She has finished her first 7 days of Xeloda but it was discontinued due to her hospitalization. She is on her fourth day of hospitalization now to get her nutrients and blood counts back to "normal". She is experiencing severre diarrhea while she has been in the hospital that we are assuming is due to the Tykerb but it may also me from all the IV nutrients and other meds she is having to take. 

I've read that some of you have reduced the dosage of Xeloda to reduce the diarrhea. Our Onc. has stated that he will do the same due to the same reasons but has not indicated a reduction in the Tykerb. Prescription Imodium was prescribed today and I'm  crossing my fingers it will help. (Over the counter Imodium was not useful). It seems that she will have to "experiment" with when to take the T/X so that the diarrhea side effect is minimal.

Paula is such a strong women that I know she will pull through this latest bout as well as she did a year ago when her breast cancer spread to her brain. Her lastest tests results indicates that no cancer malignancy was found in her spinal fluid (including her brain). I hope Paula will continue updating you on her condition after she is released.

You thoughts and comments are welcomed.  

I love you all for the strength and courage each and everyone of you have in your fight.

 jp

CTG

Thanks for the advice which I will pass along to the nurses and doc. Last night was better for her. Only 4 diarrhea bouts vs 7-8 the night before.  Good news, come to find out, she has a bacterial infection in her stool that they believe is causing most of the diarrhea symptoms and maybe not Tykerb related (cross my fingers!!). This is common and is very treatable. Doc. says it should "pass" in 48 hours. Getting through these next couple of days will be trying for Paula (50 yrs young) but I've told her (as has her nurses and Onc.) that she will again be eating better and her strength will return. Probably another 2-3 days in the hospital until she is able to come home.

Sorry to go on and on, but as you know, this is my therapy. Good luck to all and thanks again for listening.

"jp"

Hello CTG and everyone taking Tykerb/Xeloda

I started taking this combination 24th Aug  4000 mg Xeloda and 1250 mg Tykerb daily after Herceptin failed to be effective.  The tumors in my neck had increased to an alarming size and within a very short time, but within the first 2 weeks of these new drugs I no longer looked as though I had the mumps and could move my head quite freely - BUT - the side effects are quite severe and until I found this web site only two days ago I was wondering what I would do.

Your comments about the side effects and your advice of how you all have dealt with them have helped me greatly.  Thankyou.

I stopped taking Xeloda (one week ago now) when my feet blistered and I found it very difficult to walk.  I see my Onc. Monday and I expect he will reduce my dose.  

I live in the Australian state of Victoria and these drugs have only been made available to us recently.  Some of the products you have mentioned are not available in this country but I will be following them up.  We must have equivalents.

Thankyou all for sharing your experiences.

Janice1 

I have just been given Xeloda and Tykerb yesterday - 3 Oct 07. The dosage is 1250mg Tykerb and 3000mg Xeloda. I decided to do some research before I start and found you all. After reading what you all have had to say I am very nervous about taking the drug and the side effects since I think the dose will be too high for me. I was on Herceptin which was working great for me it just does not cross the blood brain barrier so I have brain tumors which I have just finished radiation on. I was on a clinical trial for a drug like Tykerb and was very ill on it. I ended up in the hospital twice for dehydration and stayed on the drug only 2 weeks, I could not take another day of being sick and diarrhea. I am stage 4 breast cancer that spread to my liver, pelvis and spine very quickly. The Herceptin took care of that problem. The brain tumors started a year ago and came back a couple of months ago which is why I was looking into Tykerb. I don't want to start today since the weekend is so close and the doctor won't be around. Any advice on the dosage and how soon you can expect side effects. I understand what Tinaz is saying why make myself so ill?

Ok, the itching is better but not completely gone.  I started back on Xeloda Sunday and will start back on Tykerb Wednesday.  For some reason my eyes are all swollen and puffy in the morning.  I've never had this before now, any ideas?

Kasey

Hi everyone.  I was diagnosed with Breast Cancer in 1994! Since then I had lumpectomy, mastectomy, chest wall nodule w/chemo in 1999 and then reoccurance of bone mets in Jan 2005; treated with radiation and herceptin. All went well until Sept 2007. Now have added Xeloda to regimine.  I too have stinging in my eyes with a real sensitivity to light; but the worse is the hand and foot syndrome.  Very hard to walk. Will meet with my onc next week.  Maybe he can adjust the dose like you mentioned.  Have just finished my second round of Xeloda, 4 pills am and 4 pills pm. Could not take Zometa for bones (kidney problems) so am now on myacalcin nasal spray.  Any one using that?  How have you handled the foot and hand problem other than adjusting dose?  Thanks for all your help.  It is great to share with someone who knows what I am going through.