Tykerb/Xeloda - Not Working

[mec2450]

All,

My wife started Tykerb/Xeloda combo 12 weeks ago after Herceptin/Abraxane seemed to stall out on us and stop working after keeping her in check for 18 months. We just got results of CT yesterday and no progress with the T/X combo. Disease seems to be progressing - still only in her lungs (that we can tell) but I am getting concerned that it is spreading other places that we do not know about yet.

We are meeting with ONC next week to determine next steps but I think he is thinking we give it another 12 weeks with T/X before giving up on it. My concern is that we saw no improvement with this last round and i do not want to waste 12 weeks on something that may not be working. Unless I am missing something - this is mostly a trail and error process at this point and we never know how something will work unless we try it.

question for you t/x people out there - if it is working for you did it work right away or did it take time. Judging from what i have read on the board - it seemed like T/X either worked right away or it did not work. Can anyone confirm for me. What other chemo can be combined with Tykerb?

Also - any thoughts on other chemo combos. I am thinking we give navelbine/herceptin a try - my wife has about 10 nodules in her lungs from 2mmm to 8mm in size - no where else that we know of at this time.

Thanks in advance for your responses!

-Mike

[Esther]

Mike, for me the T/X worked right away, within the first 3 weeks. But as with any treatment, different people have different response rates, and I have heard of one person who began to have some success with it after a slow start in the first few months.

It's hard to say at this point, it is an art rather than a science to decide on treatment. See what your onc has to say and his reasons for it, and make your decision from there. If your wife is not facing an immediate health threat, perhaps you can give the treatment a little more time to work.

[Lolly]

Mike, I'm on Tykerb/Abraxane, as I had already been on Xeloda for over a year just prior to starting Tykerb. I started seeing response by the second week.

I personally had great response to Herceptin/Navelbine so it is a strong combo, but since she stopped Herceptin so recently maybe your onc would consider adding Navelbine to the Tykerb?
My onc had no hesitation in considering other chemo's with Tykerb, it was just a question of settling on one that we hadn't tried before in order to ensure the best response. He will go back to other chemo's but only after at least a year has passed since previous use.

[mec2450]

ALL - thanks for the reply's and encouragement.

Esther - glad to see it is working for you.

I am sure we will find the right mix - thanks again and god bless!

-Mike

[SoCalGal]

I've been on Tykerb/xeloda for 3 months and it's not doing the trick for me. Just me with my ONC and he says that 3 months is giving something "a fair try". I am staying on the Tykerb and will be adding in gemzar and carboplatin. I specifically asked my doc how long one needs to stay on a regime to see the results. In HIS opinion, he said 3 months is plenty. Hope this doesn't add to your confusion/fear but knowledge is power and we need to be our own advocates. You can always seek another medical opinion. Good luck and god bless.
Flori

[mec2450]

thanks Flori - appreciate the information. I would agree about the 3 month timing - we gave other drugs this amount of time to work before moving on. One thing though about T/X is that from what i can tell by looking at several message boards - if the patient does not get the "Tykerb Rash" early on in the cycles then the chances of the drug working for you are slim. Since my wife did not get the rash - I am more proned to consider moving on to another combo - like herceptin/navelbine...

thanks again - mike

[SoCalGal]

Just a quick - fyi - I did have a rash but it still didn't do the trick. I think a rash is still just a side effect. I know it was thought of as favorable, but I don't know if absence of the rash is unfavorable. Sorry to add confusion.

[SoCalGal]

Mike - just saw this post - in the tykerb/herceptin section - thread: Tykerb/Xeloda update posted by Joy.
www.her2support.org/vbulletin/showthread.php?t=29004

Brenda,
I did not get a rash at all and after 6 weeks on this combo my liver enzymes returned to normal and my CAT scan showed fabulous results. So don't sweat the "no rash" - my onc says that side effects have no relation whatsoever to results.

Donna
__________________

[hutchibk]

Mike - please don't 1. give up on Tykerb, and 2. expect that a rash is the absolute indicator. I did not get a rash like others did, mine was 2 weeks of mild dry skin on my cheeks. Hardly a rash... and I have had very large drops in my tumor markers on T/X, 45.1 to 37.5 the first 3 weeks and 37.5 to 17.5 the second 3 weeks. It can take time for it to work.

[jojo]

For a clinical trial, I am currently taking Tykerb & Avastin. I think it has been about 1-1/2 months so far. As side effects goes, like one of the most common symtom, the diarrhea. Instead, I get a little constipation, but over-the-counter meds would do the trick rather very quickly. I also don't have any rash. From Avastin, I don't even have a bloody nose in the morning -- not even once. So, my gut feeling tells me that this combo is not putting me into remission; though, I am a pessessmist <sp?> optimist.

Best of luck to your wife as well as yourself! Please come to us ANYTIME for any questions or comments!! Keep that in mind, Mike. You take care....

[Shahyan]

if one combo fails many others can work. Please try Herceptin/Navelbine or Herceptin/Taxol or Taxane or Abraxane

[hutchibk]

And don't forget Gemzar.

[Odette]

Hi Mike,

I ran out of town to visit my children after my recurrence (lungs, nodes)
so I did not see your post.
I had Tykerb Xeloda only for 10 weeks and had a rescan which showed progression.
My oncologist is keeping me on it for another four weeks just in case I got the mets while waiting for the approval to go through, in which case the combo still could possibly at least keeping the mets stable. He has ordered rescan in four weeks. By the way I have had pretty impressive rash right on my nose.

To be truthful I could tell that he seems to expect further progression in four weeks. He is planning to put me with the trial drug HKI 272. If I were the doctor and he was my patient I might do the same. What this HKI 272 seems to be: not very powerful as far as kicking cancer's butt, but there is a chance it can buy me a good couple of weeks progression free time and it's side effects seem to be minimal.

The time being I'm trying to figure out some incredidiet to help the T/X but I cannot exactly decide what's best?
No sugar, no white flour, only olive oil for fat, salmon, lots of raw and cooked vegetables. But cannot decide to give up fruit (because of the sugar) since it is so wonderful to eat the seasonal fruit in Ohio.

This is my story so far. I'm also waiting for my Memorial Sloan second opinion doctor to come back from vacation and consult with her.

I'd love to hear more from you.

Odette

[tousled1]

Mike,

I don't know what treatments your wife has received to date. I was just diagnosed with lung mets and my oncologist put me on Herceptin, Taxol, Carboplatin. IT will be weekly Herceptin and the Taxol/Carboplatin will be 3 weeks on 1 week off. Not sure if you've tried this combo before.

[julierene]

I have been on Xeloda/Tykerb for 3 months now. I only got a 30% decrease from a spot that we thought was scar tissue. Oh, I had no rash...

I just wonder if I need to add Herceptin too or something? How can they really tell if 30% is from tumor shrinkage if part of it is scar tissue? This spot remained stable in size and did not show up on PET scan for a year on Herceptin. Any thoughts?

[supermehra]

Tykerb + Xeloda seems to be working for my mom. She has been on Tykerb for 4 months and Xeloda 3.

Prior to this round of chemo, she had a large metastatic lesion on the sternum and had just been operated for a large brain lesion. Brain Surgery+4 weeks into the Tykerb treatment (just prior to starting Xeloda), her PET showed no progression in the brain - but new multiple mets in the liver - albeit small and may have already been there and not picked up by the previous ultrasound (no PET was done).

After starting Xeloda, within a week, her sternum pain had completely subsided. So we know that xeloda seems to work for her. Tykerb results can only be measured in 1 weeks time when she finishes her 3 month T+X regime.

Overall she seems to be better off - tykerb side effects were minimal. Xeloda does pull her down, making her weak and of course the darkening/rash at the extremities. No tykerb rash noted during the 4 weeks she was only on tykerb.

Hoping for a good result on the PET next week, will post then.

[IRENE FROM TAMPA]

Mike

I have been on the Tykerb/Xeloda combo for the last year now and never had a rash. I believe as some have stated, that side effects vary from one patient to another. Pls dont think that this is the reason for it not working. I have frankly never gotten nausea or felt sick from all of the thousands of chemos I have been on and wondered at one point if this meant it was not working as well. I dont think it works that way. Some people are just more prone to some of the side effects then others.

I would keep your research going with your onc. for future, but meantime I pray that your wife starts seeing some results.

Take care