Xeloda and Tykerb...anyone on this combo?

Denny123 · January 2018

I have been on chemo for 16 years as a 16 year survivor of Stage 4 BC. I have 3 nodes in my chest which were kind of stable with Kadcyla, but it quit working.

Was just on a clinical trial phase 2 of Poziotinib, but had to quit it because the side effects were too severe.

My next chemo is probably going to be Xeloda and Tykerb.

Looking for info on side effects!

Denise

Snowfall · January 2018

I am in the midst of my first cycle of this combo after a short run with Kadcyla. So far, not much by way of SEs, but I understand they're cumulative over time. I have had increased acid reflux, which I'm treating with ranitidine and Tums. I'll be talking to my onc about other reflux treatments next week. I suspect I will have to make some dietary changes. Goodbye, coffee!

I'm working thru a bad bout of plantar fascitis (unrelated to cancer) which always leaves me feeling achy and fatigued, so I'm attributing them to the PF rather than to the chemo.

My biggest challenge is consistently having two meals 12ish hours apart. I'm aiming to eat around 6 am and 6 pm, but I'm not mastering the part where I need to get up and eat breakfast. I've just started back at work after a year of setting my own schedule while working from home. Morning alarms are hard!

Denny123 · January 2018

Thanks snowfall,

Interesting that you were also on Kadcyla. How long were you on it? I am waiting for the Super-Kadcyla to be approved (DS-8012), but it is only in Phase 1 clinical trials.

Through all of my years of chemo, I have learned to eat bland stuff and don't see any chance of being able to eat like a normal person.

I have had PF off and on for years, and have just about given up on exercising which just makes it wore.

Were you ever offered Gemar? Gemzar with Herceptin cleared out my huge liver mets in 2004 in only 9 months.

Just found out yesterday that I am positive for BRCA2, and equivocal for BRCA1. I had asked for testing for years, but never met the criteria for testing.

Snowfall · January 2018

I haven't tried Gemzar yet. Kadcyla was my first treatment after metastasis. The first three doses cleared up my liver and lymoh nodes and shrank the nodules in my lung. The second three doses left my liver and lymph nodes clear, but allowed growth in the lung, so we switched to Xeloda and Tykerb. I'm hoping it keeps the liver and lymph nodes clear and adds the lung to the success list. I won't say I'm not nervous about leaving Kadcyla behind. I had four types of chemo neoadjuvantly and none were particularly successful.

I am coming to terms with the dietary limits. I love cooking and eating and am not eager to abandon them, but realize I may have to.

Denny123 · January 2018

Gemzar was very easy for me.

Just got a call from another chemo nurse and my tumor tested positive for BRCA2, which is called sonomic. But that doesn't mean that my whole body (germline) is positive. Better news, and so much to learn.

Good luck with your diet. After eating creamed stuff for 2 weeks, any change for me is welcome.

Snowfall · January 2018

They tested for BRCA 1 and 2 when this all started, and I am negative for both. I wonder if that will open up additional treatment options for you?

Good to know Gemzar can be easy, if it might lie down the road for me. I am happy that there are treatment options to try, but trial and error seems like a pretty haphazard approach. The three months between starting a new treatment and having a scan to see what the effect has been are pretty stressed filled for me. I'm trying to take the pills and get on with my life, but every abdominal twinge has me worried.

Denny123 · January 2018

I sure do hear you on the worrying, and I have been dealing with this for 16 longgggg years. Tons of stress.

I asked about new chemo options with the BRCA and my protocol nurse said she will inquire into options. BUT they would all be clinical trials and all would require a biopsy of the tumors, which are all behind my sternum-2 above my heart which have formed into one large one, and one beside my esophagus.

So they can't get to the tumors and I am done with clinical trials at this point, unless a last option. And she said if I could get a biopsy, I would be off chemo for 6 more weeks. No way will I do that.

Eljaywest · January 2018

I was on kadcyla for seven months but then a scan showed my brain mets had grow, though some had shrunk. So my onc took me off kadcyla and I'm now just finished my first week of xeloda. Not a sinke side effect! So far! I'm waiting ,to get on the tykerb. The cost is $4000/month! We have appliedd for assistance. Has anyone had any luck with getting it at least partially paid? Thanks.

Snowfall · January 2018

Happily, my insurance covers the med cost with a very small copay from me. Frankly, I don't know how people afford treatment. I don't have an extra $500 laying around each month, much less the thousands that some are charged. I feel fortunate, but I think everyone should be equally fortunate when it comes to healthcare.

Denny123 · January 2018

Lin,

Most chemo centers can get coupons from the company that provides Xeloda or Tykerb to cover the cost. You should ask about that.

Denise

Eljaywest · January 2018

thanks. I’ll check that out.

Denny123 · January 2018

Just talked to my chemo nurse and they are going to put me on Olaparib, which is a PARP inhibitor, since my tumor is BRCA2 positive.

But the co-pays are so expensive that they have to seek grants to help to pay for them.

Bjeme · August 2018

Didyou get help paying for Tykerb?

Xeloda and Tykerb...anyone on this combo?

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