Xeloda for "Maintenance" purposes (not Stage IV)

mamacure

Hi ladies,

I finished 8 cycles of Xeloda last night!!! Yay yay yay! I hope it did the job. It was tolerable than expected. Little pinkie toe bled little but no biggie. Nausea, diarrhea were minimal. I only took pepsid once. I did not take too much vitamin B so will take more. So happy I don’t have to force eat before X anymore. Wishing you all the best. Keep in touch!!

serendipity09

Hi Mamacure!

YAY!! So happy you are done! I pray that X did its job for you. Now it's time for you heal.

I'm still struggling with SE's, the most severe is the neuropathy in the hands and feet. I have a feeling it's permanent.

Please do keep in touch.

Sending you warm thoughts and many thanks for being so supportive!!

Hugs

HopeHeal

Mamacure congratulations on finishing (!) and best wishes for the future. You did it! Yes tell me about the force-feeding, intrusive.

Serendipity, my fingers started feeling painful at around Xeloda cycle 5 and MO switched me to a less dose-heavy schedule. Feeling better on it. I very much hope your neuropathy is not permanent, from what I heard most likely will heal but healing neurons take a while. I am still dealing with leftover neuropathy in my toes from initial chemo.

serendipity09

Hopeheal - thank you! I sure hope it they heal!

KateR2021

Good afternoon, all! Thanks so much for starting this thread. I was diagnosed with Stage 3b TNBC in Oct 21, have done 6 mos chemo and immunotherapy (A/C, taxol, carboplatin, keytruda), bilateral mastectomy with tissue expanders placed in May 22-- pathology indicated resolution of breast tumor but residual cancer in 2 of 7 nodes, 6 weeks radiation to chest wall and axilla, and about to start Xeloda and Keytruda on 9/15.

My MO did test for DPYD gene / DRD deficiency- and thank goodness, because I have the DPYD variant (score 1.0- meaning I am an "intermediate metabolizer" which is associated with severe side effects and even death-- 1 or 10 people with this genetic variant died on full dose Xeloda!!). I am going to start at 50% dose (2000mg) and be closely followed -- but I AM SCARED! In caps to highlight how I feel about it-- I'm actually pretty terrified. But I'm also terrified of doing nothing systemically given that there was *still* cancer in my lymph nodes after 6 mos of all that heavy duty chemo AND immunotherapy.

Does anyone else on this thread have the genetic variant/DRD deficiency? I read that 30% of people with this variant end up in the hospital at some point even if they do a dose-guided treatment (starting at 50% and adjusting up or down depending on response). I would love to connect with someone else in this situation, as it feels incredibly scary to walk into this knowing the risks.

I am grateful to those of you who started this thread, and have made note of all the things that seemed to help-- and welcome any other suggestions for how to reduce or manage SEs even if you don't have the DPYD variant.

And.... I would STRONGLY encourage anyone else about to start to GET THE DPYD test!!!!!!! The risks are real- and it is rare but if you have it, the consequences are truly potentially fatal.

Thanks, all-- so appreciate the breastcancer.org community and the support offered, it makes a hard journey a bit easier..

serendipity09

Kater - I don’t like to say welcome, as this is the club no one should have to join, but nonetheless welcome to our community

I’m sorry that I cannot attest to having the gene/deficiency and I believe I was tested for it. I hope that others will chime in and answer some of your questions. In the meantime, we understand why you are so scared and we are here for you. Just a thought, maybe you should start a thread regarding the DPYD/DRD, there very well may be others on the site that can tell you their experience/knowledge. Regardless, you are def more than welcome here!

There is nothing simple or easy about any of this and you need to feel supported, so you’ve come to the right place!

As far as Xeloda goes…everyone reacts differently, I had a harder time than most. As others will tell you it was very tolerable with little side effects. My side effects were not the normal SE’s.

Warmest thoughts to you!

NorCalS

Hi Kater2021.

I was diagnosed with TNBC 3c/4 (supraclavicular nodes) and had neoadjuvent ACT before lumpectomy. The chemo killed 99% of cells in the breast tumor bed, but I had a positive node. At the time (2019) keytruda was not used as neoadjuvent treatment, but I was given the option as part of a clinical trial to have keytruda as adjuvant treatment after radiation. Unfortunately, I did not have enough cancer cells to test for PDL-1 status, so I did not qualify for the clinical trial. At the time, MO felt that adjuvant chemo was not necessary, but due to my concerns we went forward with Xeloda. I’m pretty sure I was not tested for DPYD. Side effects were not pleasant, especially the headaches, but I got through it.

For what it’s worth, I think my MO believed keytruda would have been more effective at killing any remaining cancer cells than Xeloda.

mamacure

Hello Kater,

You had the big stick treatment like me including Carbo ugh. Good job getting this far. Xeloda hopefully at 2,000 I hope will be easy for you. I asked my Onc to test me but she dismissed it as unnecessary but I forgot what she said about it. I’m really hoping keytruda & X killed every thing left by chemo. Stay vigilant & keep close touch with your medical team. I’ll be thinking of you! Now I am taking a bunch of supplements to prevent it from coming back. Hugs to you & everyone on here.

serendipity09

Hey Mamacure! Hope are doing well!

mamacure

Hi Serendipity! I hope you are doing well & no side effects. Take care

KateR2021

Thanks so much, norcals, serendipity09, and mamacure! It is so helpful to have this link, so appreciate all the experiences you have shared (and so sorry that you have had the challenges you have had! you are right, serendity09, not a club any of us wants to belong to!). Appreciate the good thoughts, and yes, mamacure, does feel like a 'big stick' for sure!!

Sorry for delayed response, took a brief vacation (yay!!) between radiation and start of Xeloda (was wonderful and actually had a brief reprieve from thinking about cancer), so was out of town for a bit. Took first dose of Xeloda last night. Definitely feeling anxious, but no SEs from that first dose. About to take 2nd. Starting at 1000mg 2x/day, and will do CBC to monitor weekly. Oncologist was realistic, but despite fact that she is the lead oncologist for the team at our large university hospital, acknowledged she has only had one patient that she knew of with this variant (though assumes there were others before they started routinely testing) -- and that patient had a rough time and eventually discontinued. Sobering, but at least appreciate that she is monitoring and thoughtful about this, and following guidelines as much as they exist.

Will keep you all posted, and in meanwhile, using the helpful advice shared about how to reduce SEs best as I'm able! thank you for your notes, so appreciate it.

serendipity09

Kater - a vacation well deserved!

There are many members who have posted that Madame has been very doable. I had a bit of a difficult time with it, but that's just par for the course for me, I had some medical issues prior to being diagnosed that more than likely contributed to the SE's. I'm grateful to have gotten through it this time.

I hope that all goes well for you with no/minimal SE's. Please check back in and let us know how everything is going!