Xeloda coming to an end!

[Flower1513]

Good morning! I’m posting for mom.

Last check mom was er/pr + her 2 low that was last checked July 2023

Mbc 2020

She did ibrance and femara 2 years 9 months

Anfintor and Faslodex 6 weeks

Xeloda- present for 8 months . Last scans were not terrible. But mild progression in bones with 2 rib fractures . But more shrinkage to liver. Doing radiation next week and meeting for treatment change .

I know Enhertu was mentioned as being her next line of treatment. I’ve heard good things

But would love to know any other suggestions before going straight to iv meds.

I don’t feel like they gave HT a chance after first fail from anfintor. She went straight to xeloda which has been a good drug . Just didn’t last as long as we would like

Side note- it could because it’s now. Liver bones and she has had a few tiny brain mets that were treated with gamma knife But right now other than bones . Last mri no brain Mets, the 2 liver lesions have shrank on all 3 last scans. But progression in bones .

Any thoughts on other treatments ideas other then enhertu are much appreciated

Thanks so much!!

[13plus]

Your mum’s treatment plan and times on drugs feels quite similar to mine. IBrance about the same time, almost a year on Lynparza (brca gene) but that’s when I first got liver mets. Then I did a trial of a combo of those for 6 months, that failed. Afinitor for about 4 months and now Xeloda for about 6 months but TM on last 2 blood reports have shown one creeping up again. Meanwhile I’ve had a few symptoms making me feel maybe the bone nets are increasing again .(only had one set of scans so far which showed stable and reduction of tiny lung Mets that I had acquired at some point earlier).. I wa also hoping for a long run on this drug.

I’m seeing my doc this week so I will see what she says . Imagine she will order new scans now.

Previously she had mentioned exemestane as a possibility. I need to brush up on other options I’d like to explore. I also need to review the recent report from the ASCO conference as they may have new information. Sorry your mum is facing a change again, it’s certainly not what we all look forward to!

Wish I had more to suggest. She’s fortunate to have your love and care

[Flower1513 in reply to 13plus]

Prayers for your upcoming scans! Maybe we can compare notes. Mom’s appt is Wed. I will let you know the options offered. Thanks so much for replying ❤️

[13plus in reply to Flower1513]

Yes, we should compare, thank you for the kind thoughts

[Gallivanter]

Hi Flower1513 -

Your Mom's scenario sounds nearly identical to mine a few months ago.

Have been on Xeloda for 18 months, 3 months ago scan showed a bit of progression in the bones (a couple of new mets) and shrinkage in the liver. My oncologist suggested I remain on treatment because "what comes next is so toxic" - she couldn't see switching me when I was feeling and doing quite well.

She suggested I ask my secondary oncologist at MSKCC to weigh in; That doc agreed, recommending that we "wait for more pronounced progression".

Two potentially relevant considerations:

First, my scans were PET scans, not great clarity for bones, as noted by one of my docs. I assume this means that dx "progression in bones" can be squishy.

Also, my overall cancer/tumor "burden" at this point is quite low since Xeloda has pushed things way back. So I'd have to have some significant progression before it really affects how I feel/where I am. I don't know if this is the case w/ your mom, but maybe they're worried that loosening the grip a bit on the cancer (i.e. forestalling a change) might risk more brain mets or similar?

[Flower1513 in reply to Gallivanter]

Thank you!! These are indeed great questions you have brought up, and I will ask on Wed at her appt. I appreciate the feed back. I was kinda taken back that they were changing her meds. Her overall report was actually pretty good! Thank you ❤️

[Bettybuckets]

Hello good daughter- I recently failed Exloda too. My Dr suggested Doxil because it is generally well tolerated and only monthly infusions… it seems to be working as my bones and tummy from the liver Mets feel better- but only 2 cycles in. Some of the other IVs are weekly. I think we may all get them all ( all the chemos) in the end but I am taking the most convenient to my life up front while I have the energy to travel etc. just a different perspective. Hope mum does well on whatever you decide on.

[Flower1513 in reply to Bettybuckets]

Thank you! I will keep this in my notes for possible treatment. Hope you are feeling overall very well on this. I did read about your heart. I pray you get that all sorted out and this treatment serves you well for as long as possible. ❤️

[Bettybuckets in reply to Flower1513]

Still on hold waiting for it to be sorted out… this is the first break from chemo in 4 years and it feels so good to have my feet feeling better from HFS… I hope to have it figured out by Aug 1st when I am rescheduled for chemo.

[Hopeful4Cure]

I felt the same way. You have got to be proactive and insist on the molecular test for mutations. Former dr had me on 4 different chemo iv and pills w/o test. I did not have the esr1 mutation. I had no mutations. Same dx too 2016. Currently still on afinitor and exemestane since Feb 14 2024.

[Flower1513 in reply to Hopeful4Cure]

Thank you! We asked about this. She had Tempus testing ? Suppose to be similar to Guardant 360. But was one year ago . Do you know how often these should be done ?? Thanks so much for your response❤️

All of this will help us tomorrow at her appt🙏

[MettavivorDS in reply to Flower1513]

It’s my understanding that the testing for mutations should be done whenever there’s been some progression. Cancer mutates. That’s what causes the progression.

[TammyCross]

I always have that question - when to repeat testing. I have asked at conferences The answer is often. I had progression on the 3rd combo of estrogen blocker and targeted therapy. My onc put me on Xeloda -' no idea if it is working yet, hopeful but discouraged by initial blood test. Went to MSK for 2nd opinion. That doc INSISTED I get the Guardant test right away. It was 2 years since I had Foundation1. One answer is to get tested whenever there is progression.

Turns out I now have ESR1 mutation

They are eased that I am now eligible for Oserdu. Still trying Xeloda for now, but failures on ER treatments may signal a mutation.

[Flower1513]

Update*******

The plan right now is she going to Enhertu!!!

Her oncologist said it is suggested to test when there is new progression . My personal thoughts is they don’t push for this testing because it is expensive ! Mom had to fill out a financial form for the test . Because they said insurance may not cover it. And private investors step in when it’s not covered. Reason why…. I think they dont push for testing at each progression . She did get it done yesterday with blood so we will see what it says . Just want again to thank you ladies ❤️. This group is simply amazing!!

[Goga156 in reply to Flower1513]

what kind of testing?for which mutations?