Help choosing 1st chemo

jobur

Hi All,

After 7 mostly good years on AI's, my good friend Faslodex, and targeted therapies, it is time for my first chemo. I know I have been extremely fortunate. I have potentially chosen Xeloda in large part because (surprise!) I don't want to lose my hair and neuropathy would seriously impact my QOL. My mo was good with this being my next tx, but in doing a little more reading I see on the main site that this drug is normally used after Taxol and Taxotere fail. I also see that they attack the cancer cell differently, with Xeloda causing the cell to die before it divides and the taxanes interfering with the cell's ability to divide.

So my question is, should I be doing a taxane before going to Xeloda? Will going on Xeloda first mean the taxanes are less likely to work in the future? Is one chemo more powerful than another?

I plan to discuss my concerns with my mo when I see her later this week, but would much appreciate your thoughts, experiences, and knowledge as I make a final decision.

Thank you and best wishes to one and all-

Jo

moth

Hi Jo, these are good questions & my *sense* is we don't actually have good answers for them. Part of it is going to be very specific to each patient & their tumor's micro-environment and evolution patterns. We know that the tumors mutate to develop resistance to many of the chemos but I've not seen much to suggest that there's an order to which they should be used.

You are right about the categories:

from NCCN pt guide

I think generally speaking most oncologists feel that once you've tried something from one category, you should move to the next. But I just recently posted a study from the BC Cancer AGency showing that some women who had progressed on paclitaxel had a response to nab-paclitaxel... so even that is not a sure thing as it could be that certain drug is just better able to deal with a specific patient's tumor.

From the professional version of the NCCN guide, I am showing you the page on chemo options after the endocrine & targetted treatments have ceased to work. There is no indication of which order to use these agents.

I hope your MO can give you good information about what they're recommending and why...

moth

let me know if the screenshots show up in my post or not.... I don't see them but they show when I try to edit. so confusing?!

I'll repost if necessary

jobur

Hi Moth,

I can see your screen shots just fine. Thank you for posting them. So far I have remained blissfully ignorant of all the different chemos and this is a great primer to start my education!

Actutally, I suggested Xeloda to my mo, not the other way around. She was thinking ado-trastuzumab for next tx because I have the Erbb2 mutation. I have been on neratinib for 2 months and have had significant progression and soaring TMs, so was not keen on trying another tx targeting that mutation. (As it turns out, ado-trastuzumab was not approved by insurance any way.) My mo is wonderful, a good listener, and usually open to working WITH me. I feel we make a great team.

Thanks so much for your reply.

Husband11

My wife used xeloda as her first line of treatment after being diagnosed with Stage 4 mets to her liver. She did have FEC-T back 7-8 years prior when she was diagnosed with stage 3.

The xeloda worked great, and she stuck with it for over a year, before voluntarily switching to ibrance and letrozole.

She did suffer from neuropathy from the xeloda, and hand foot syndrome. Her dosage was lowered, and she also played around with different dosing regimens.

Xeloda was not her oncologist's first choice. A taxane was. But, she decided she wanted xeloda for the same reasons you list.

Sadiesservant

Hi Jobur,

It seems to me there are many on BCO that started with Xeloda as their initial chemo so that is not out of line. My MO started me on Taxol initially but that was in an attempt to get my lung full of fluid from pleural mets under control. Next up for him was Xeloda. His preference has been to go back and forth between estrogen treatments and chemo but I was only on Xeloda for a short time previously so am giving it another go now that it has spread to my liver. Feeling quietly hopeful that it's doing the job with some diminished pain and other symptoms. Fingers crossed.

Moth, thanks for the great information. I take it you need to be registered to access the NCCN site? I was hoping for a clearer image and so went to the website but it asks for a password. Just wondered if I am going to the wrong area.

50sgirl

Hi Jobur, Xeloda was the first chemo that I tried. It was quite tolerable for me, but, unfortunately, I had progression and had to move on to Taxol. I had a good response to Taxol and remained on it for 11 months. Xeloda had definite advantages for me. It was in pill form, so I did not need a port, I only saw my MO once a month rather than having weekly appointments as with Taxol. My blood counts were better with Xeloda than with Taxol. I did not lose my hair on Xeloda as I did on Taxol. Of course, as Mot pointed out, everyone responds differently to treatments. I am sure you will think everything through and make the choice that’s best for you. The best thing is that you can change treatments if you find one to be unbearable! I will be thinking about you. Let us know what you decide to do.

Hugs and prayers from, Lynne

moth

Sadiesservant, yes, that's the professional version that requires registration. pm me if you want it

ShetlandPony

Hi, jobur. I'm sorry to hear that neratinib is not working as hoped. Something else must be driving the cancer. My first mbc treatment was Taxol, and I did two years of Xeloda.

My impression is that oncs often prescribe Xeloda as a first chemo if possible as it is considered easier, but will go to taxol if they feel the need to gain fast control over mets that are putting you in imminent danger. So if that is not your situation, you could save taxol for a time you might need that big punch. But if things are dicey right now, your onc may suggest using taxol to get things back under control. But what is powerful also depends on the particular cancer, I think. In my case both worked quickly and well.

I know that the order of treatments is an area of research interest, and you could search for any papers or ask your onc if there is any recent research. But really the general principle seems to be to give the cancer something from a class of drugs it hasn't seen before. Your onc may have seen that one or the other seems to work well depending on subtype, history etc. and even though there may not be big studies, he/she may have an intuition about what would be good for you right now -- the Art of oncology.

With weekly taxol I had a weekly cycle: day one sleepy from Benadryl, day two energetic from steroids, day three and four bit of a crash and feeling flu-ish, days five, six, and seven fairly normal. I did not use cold socks and gloves (back then) and we stopped after five months to prevent the neuropathy (numbness and tingling) from becoming permanent. On Xeloda, I had to take good care of my hands and feet, and of course there is fatigue with all treatments, but I felt pretty darn good considering. It is my favorite treatment to date. With Xeloda finding the right dose is very important. Otherwise the side effects can be too severe for good quality of life.

I hope something I wrote will be helpful.

jobur

Husband11 - It's good to hear that Xeloda worked well for your wife as her 1st tx for stage IV, and quite interesting that she went to an AI with Ibrance afterward. I hope she is doing well on this combo, I think Ibrance is a great drug and many seem to be getting years out of it. Also hope her HFS and neuropathy have gone away since stopping Xeloda. And may I take this opportunity to say I think you are husband #1 for coming to this forum on behalf or your wife! My dh is very supportive but I can't imagine him doing that! Wishing you many good years together and great results with Ibrance.

Sadieservant - Your experience seems to bear out what moth said about each person's treatment being specific for their particular cancer. I find it interesting that your mo prefers to go back and forth between chemo and AIs. Love hearing Xeloda has lowered your pain level. It gives me hope it will do the same for me. Fingers crossed for both of us that Xeloda will work and give us a nice long run before we have to face another tx change.

Lynne - You make a great case for the advantages of Xeloda over taxol, including some things I had not considered. I hope to still do a little traveling (when and if COVID ever gets under control) and weekly mo visits will make that difficult. I am sorry this Xeloda did not work longer for you. I see you have chosen Verzenio for your current tx. I so hope it is both tolerable and effective for you. And thank you for the reminder that stopping an intolerable tx is always an option.

Shetland - Your post was indeed helpful, as always! My mo wanted to try ado-trastuzumab next, but I felt my progression was significant enough to try something less experimental being as how neratinib did not appear to work on my Erbb mutation. My progression is not life threatening, but I do have significant pain again from pelvic mets, so I'm hoping for a fast response from Xeloda. I am getting a liquid biopsy next week, so that may shed more light on tx options and order. My mo has said the same about oncology, that decisions are made partly with the head and partly with the heart. Thank you for your insight on what to expect during Taxol and Xeloda treatments and I will keep in mind what you said about finding the right dosage. I hope your current combo will keep you NEAD for a very long time and look forward to seeing the results of the SUMMIT trial.

Thank you all for replying to this thread. After talking with my mo and seeing your responses, I feel much more confident about trying Xeloda for my first chemo. Wishing you all good QOL and effective, long lasting treatments.

Jo