length of treatment--Tykerb/Xeloda

[Leatha]

Hi,

I am finishing my fifth round of Xeloda/Tykerb. Have experienced most of the side effects others have (thanks so much for the postings here that helped me get through them!) On the whole I am doing well, but have fatigue that is bothersome. My biggest worry, I guess, is the cumulative effect of all the chemos I have had (Sorry that i have not written up my history yet. I have been in treatment most of the time since 2000, but the three recurrences I have had have all been localized to the supraclivicular area. Weird! A blessing, but . . .)

My question is if anyone has any sense of how long I need to continue on Xeloda/Tykerb. My onc says I am doing so well (complete disappearance of tumor by the end of the third round) that he wants me to take 8 rounds now instead of the 6 that was the original plan. Anyone out there been on this combo for 8 rounds or more? What is the thinking on this? How bad have the side effects been? (Generally, my side effects have stayed the same or improved somewhat as treatment had continued.)

Thanks for any information you can share. This group is great. My number one source of information and support right now.

Leatha

[hutchibk]

I am in my sixth round. My experience is that my onc wants me on Tykerb/Xeloda until the end of time (or as long as it continues to work for me, which I hope is for about 30 more years, LOL). After recurrence #4 and the mets in the brain, T/X is knocking it out, and keeping it stable, so my onc and I are currently in love with T/X... I know that I will be in treatment of some kind forever as we have found that when I stop, it shows up again somewhere. Luckily I tolerate most everything really well, especially T/X. My onc has patients who have been on Xeloda with good results for 2 years +.

I get a bit of fatigue, but it helps to push yourself a little to get regular exercise - it really mitigates the fatigue. And eat as healthy as possible. That and a lot of water really helps too.

[Leatha]

Dear Brenda,

Thanks so much for your reply. I guess I was both hoping for and dreading this kind of information. I, too, am in my 4th recurrence, though mine has always recurred locally (for which I thank all the stars in the heavens). I have tolerated all treatments well. These are drugs number 7 & 8 for me. I have also had two surgeries and radiation. Will probably have radiation again. It's just hard to think of always being in treatment, even though every time I have stopped, the cancer has come back. I am so grateful that we keep finding treatments that work. You are right about the exercise. I am hoping to start strength training next month and am doing one-on-one yoga classes (I have had arthritis since my mid-thirties -- more than twenty years now).

I have to tell you how inspiring your photo is. I have told my friends about it.

grateful for your response,
Leatha

[hutchibk]

I just know that we have to keep doing whatever it takes to round the next corner - when they have something else that will kick that little Her2 to the curb... hopefully for good. We just have to continuously adjust our sails for whatever direction the wind is blowing us.

[awjkej]

Hi,

I am currently in my off week of xeloda, and will begin my 4th round on Friday. My onc too wants me to stay on it as long as I can. I have been having bad side effects, and we are still tweaking the dosages. I am currently donig 3300 mg of xeloda and down to 750mg from 1250mg of tykerb.

I know I can't go on forever with the current dosage b/c the the side effects are just too limiting (bad hand/foot syndrome, and extreme fatigue at times, but the hand/foot syndrome is the worst). So we will talk about the dosage next week at my appt.

Oh..I have bone mets - left hip and lower spine and a mass on my chest. Thankfully it has not progressed past this for the past 4-1/2 years.

Brenda, you hit it on the head with your approach! We are becoming expert sailors!

Anne
Anne

[hutchibk]

Anne - what are you doing to treat the hand foot? I have luckily only had my right big toenail become raw along the edge much like an ingrown nail... and I am trying lots of different things to simmer it down. Some work, some don't. But it's not too bad and is much better some days than others.

The preventions I take are: I take B6 daily and alternate pure aloe vera lotion, tea tree oil/foot repair balm and Climb On Creme on my feet every night and sleep in socks. I try to keep my hands nice and moisturized. So far I don't have too much to worry about with them. I have heard about a few prescripion creams/ointments that might be helpful... have you heard about Keralac (urea/lactic acid)? I have read that it has pretty good results in trials. I have also read about dimethyl-sulfoxide lotion in combo with B6 that also shows some promise in trials for hand-foot treatment.

Be sure to steer clear of Folic Acid in vitamins while on T/X (you can find it in your multi vits and B complex) - it worsens the side effects of this combo. I don't take multis or B complex right now... Also, no grapefruit products while on this combo either.

Best of luck. I hope you can stay on T/X as long as possible!

[Julie2]

Anne,

I am impressed to see that you were able to manage your mets with Herceptin only for 3 years. Waht made you to take that decision without going for chemo? I was recently had recurrence to my chest nodes. I am thinking about the same.

Thanks,
Julie

[awjkej]

Hi Julie,

I have tried various combinations of drugs with herceptin which I started the Fall of 2004. I also had my ovaries out (oophorectomy) then too. The combo that really helped my bone mets with herceptin and taxotere. I was on that for about 9 months ending July 2006. Then I made it just about a year with just herceptin before my chest mass started bothering me. I didn't have any side effects to speak of while on herceptin and taxotere As of my last PET/CT 3 months ago, my bone mets were NED. I also take aromasin daily.

The mass in my chest never responded well to any drugs. I measure the status of the cancer with PET/CT scans every 3-4 months. Nothing else is a good indicator. There was only one time when the PET/CT scan showed the mass went down in its SUV.

So I started on tykerb/xeloda b/c I was experiencing symptoms (shortness of breath, wheezing, tightness in my chest), and my SUV increased, hoping that the t/x combo will work on the mass. I am hoping that my bone mets continue to be stable while on this. I am also hoping that the mass in my chest is getting smaller...I haven't had wheezing or tightness in my chest for a while.

My onc told me that the mass is not in my lungs. It is near the bronchial tubes, and irritating them, and that is why I was experiencing the symptoms.

I also take supplements- curcumin, green tea extract, grape seed extract, calcium with vit D - and I drink 2oz of wheat grass from Jamba Juice about 5 times a week.

Brenda - I have been thinking about adding the B6 to my supplements :-). I use Bag Balm on my hands and feet, and also Udderly Smooth Udder cream. Reducing the tykerb from 1000mg to 750mg has not had as big an impact as when I reduced it from 1250 to 1000mg.

I hope this helps. Thanks Ladies!

[hutchibk]

Udderly Smooth only worked for me with Taxotere, but not with T/X... I suggest you try one or some of the other creams, maybe try something with tea tree oil first to see if it helps. Also, be sure to add the B6! It is a huge part of fighting off hand foot. And if you are able to get it under control, you might be able to take the full dose of T/X.

Best wishes.

[doh2pa]

Hi Leatha,

I am on my sixth round of T/X and my onc says the exact same as Brenda's - you're on this till it stops working and hopefully it will be years! (He also has a few women who have been on this 2 years). Like Brenda, I too get into trouble when I go off of treatment so finding something I can be on for a good long while is a blessing. My side effects have been minimal (except for one horrendous week of diarrhea- where did that come from?). I manage the minor hand foot stuff much like Brenda does - with lots of TLC, moisturizer, B6 and common sense (sensible shoes, low impact exercise, etc). Fatigue is an issue but I try to get lots of sleep and exercise (yoga, sit ups, weights) often. I love this combo - first set of scans after two rounds showed great improvement. Just had scans on Tuesday and the 4 liver mets left are down to just 2 and the two left are shrinking (die...die...die)!

Here's to a stiff headwind and calm seas!

[Leatha]

Thanks to all of you! Brenda, Julie, Anne, Donna -- you have clarified my thinking on this. I have been in treatment of some kind for most of the past seven years. (Celebrated my 7th anniversary on August 8!) The worst things for me on the t/x have been the hand and foot symptoms and the fatigue. The diarrhea has tapered off and is manageable. I use Aveeno hand cream and foot cream, as well as the Ahava creams that someone else mentioned in a different thread. I take B-6 and avoid other B vitamins, sleep in socks (and sometimes gloves), and choose my shoes carefully. I have had to give up long walks and am starting my yoga practice again. This fall I go back to full time work after some months off to do this treatment. I am only hoping that I can handle the fatigue -- but I am lucky in that I can arrange most of my work hours to match my energy level.

I am so glad to have found this place to get good information and to share what I have learned and am learning as I go.
Thank you all.
Leatha

[awjkej]

I saw my oncologist today b/c my lower back has been hurting for about 3 weeks, and became unbearable over the weekend. We are going to move up my PET/CT scan and hopefully I can get in this week. My onc doesn't really know what to expect b/c my last PET/CT three months ago showed NED in my spine and hip bone mets, and he is surprised the tykerb/xeloda wouldn't be working to cause such pain. I can always hope that it is something else! If it is the cancer acting up, I'll stop the t/x and go back to herceptin and another chemo drug.

I have to say that the worst part of this is that I can't drive on my son's field trip this week and can't participate in other events....but that just means I have to find other ways to connect :-).
So we will see. I am discouraged, but trying to keep my spirits up.

Anne