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All about Xeloda
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@cure-ious my experience with Xeloda started with excellent results in my liver. Several small lesions disappeared or were no longer detectable on PET scans. some stubborn tumors remained though, but the SUV uptake decreased significantly, and a couple even shrank. However, Xeloda never worked on my breast tumor. It is still shocking to me that my team never agreed to remove the primary breast tumor. The disease continued to progress in my breast, and new nodules appeared. Eventually, I decided to look for alternatives and found an excellent IR who was willing to treat the breast tumors with cryoablation.
Despite disagreement from my MO and the clinic's IR team, I went ahead with the procedure. A few small nodules remain, and I plan to have another cryoablation once my liver has settled down.
After 18 months on Xeloda, and against my wishes, Enhertu is now my next treatment. Unfortunately, one of the liver tumors has extended into the soft tissue in my abdomen, bad news, and I will soon need to change systemic treatment.
Regarding adding endocrine therapy to the Xeloda regimen, I had a lengthy discussion with my MO. I must admit, I hate it when he is right! He raised two important points. First, he explained that after two lines of hormonal therapy, particularly one of them was a SERD, endocrine therapy is unlikely to be effective, even when the tumor still tests ER+, because SERDs can substantially reduce or degrade estrogen receptors. Second, for the relatively rare patients who might still benefit from combining endocrine therapy with Xeloda, the Xeloda dose would need to be reduced to accommodate the combination.
I am quite devastated about moving to Enhertu. Since the cancer is HER2-low (+1), my MO estimates a PFS about 10 months. What worries me even more is what comes afterward there are only a few chemotherapy options left, and expected benefit may be considerably shorter, perhaps only 2–3 months.
I also asked him about KAT6 inhibitors combined with a CDK and a PROTAC or fulvestrant. He thought this might work for a short time but argued that trying another treatment now could compromise the benefit we might get from Enhertu later.
I am not entirely convinced by that argument, and I would really appreciate your input. I could certainly use your brain here, Cure-ious.
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Hi snow-drop, my comment is getting too long, I will send you a DM…
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@ailurophile Congratulations on your stable MRI results. I can understand that even though the 20 tiny scattered spots remain the same from previous scans, our minds always would prefer them to take a hike. Important to remember though is that the liver is a very large organ and those very small spots unless they start to grow are mostly a nuisance and won't ever affect your liver function. A bonus that your tumor marker made a small improvement in the right direction, although I think that's more from our mental mind as small variances of a few points in either direction aren't significant. I hope your PET scan provides you with some clarity and that those results are good. Funny how we are opposite in that my PET was not clear but hopefully for me the MRI of the liver will be the good source whereas you are the other way. Regardless as you say to not have new liver lesions is a bonus whatever way you look at it. My MRI is booked for November 21st. It's at 9PM in the evening so I will hopefully snag the radiologist if he's present and ask him to do me a favor and read it quickly. Here's hoping we both get the results we want. I start the 2900 mg daily dose of Xeloda tomorrow so I hope I don't get any side effects. I've been lucky so far but I know they are mostly cumulative. Stay in touch. Sandra
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@denny123 Since my oncologist referenced the necrosis possibility from the treatment I have been reading many various stories in her medical portal regarding the same. She has kindly given me access to one of sites that I used to always read articles from when I was a nurse. I lost access when I stopped working so I am so happy she is willing to share with me. Anyway this treatment induced necrosis isn't only limited to Xeloda but there are cases from many different chemotherapies so what you described from 2004 was likely that too. I am glad that spot eventually vanished with continued treatment. That's what I hope happens to mind and that nothing else appears so I can continue on Xeloda.
Your history is an inspiration to us all. I think you being Her2+ has really been responsible for your longevity as the drugs developed for HER2+ have been so successful with long-term results and of late there are so many new treatments targeting that. I hope you will continue to do so well an continue to inspire all of us. Take care. Sandra
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@girlsptz Hi Sandra. Sorry for slow response. I had a few days of headaches then trying to catch up on things. I think you started your 2900 dose today. I hope it goes well for you. I know we want to stay on X as long as possible. I have extensive bone Mets also and my most current results for CA 15-3 were at 86 in October. My highest was 1,072 in May when I was headed to a clinical trial I ended up being not qualified for. I was coming off Everolimus and Exemestane. Liver enzymes were high also and I was a little freaked out. I went on Xeloda starting May 2 and markers have been going down since. We also use CEA and now with new onc also uses CA 2729 markers. She called me last Sunday to tell me scans were good and will be staying on X for now at least. I have labs again this month and hope for at least stable markers. By the way do you have skull Mets? Between you, @cure-ious and @denny123I am inspired to learn more on my own and have more questions for my new onc this month. Thanks for all of your support. Everyone here is so invaluable with knowledge and understanding.
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@cure-ious. I am so impressed with your background! After all of your studies I am sure you were shocked to have to take all of these treatments. Being 11 years out from diagnosis is also inspiring and gives one hope. Does Keytruda work in the same way that Verzenio works? Thanks for all of your information. As I mentioned to @girlsptzI need to get more involved in my own research.
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@cure-ious @girlsptz what is the reason do you think for prescribing an old drug like Xeloda rather than a newer alternative? Is there one? I see alternatives but they are not actual equivalents when relating to HER2+. Is the alternatives jumping to Enhurtu? Hoping to find a trial for combinations such as @cure-ious mentioned. Also regarding the taking of morning Xeloda vs just a night time dose is interesting. My mind goes to money. If it is not harmful nor beneficial then profit is where I lean. Just the way my brain works and please tell me if I am way off. Thanks.
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A couple therapy ideas? First, the newly-approved drug, Gedatolisib, is for ER-positive Her2-low/no cancers that do NOT have a PIK3CA mutation. This drug inhibits two kinases in the PIK3CA/mTOR (sugar) pathway, and so is similar to capivasertib ( which is used for PIK3CA mutant cancers), altho it actually may be stronger/better. In cancers without mutant PIK3CA there are a bunch of other ways that the cancer can up-regulate this pathway, and they can then grow well on sugars rather than just on estrogen. The drug is an injection, and I think it is offered with Fulvestrant. Maybe at some point insurance will approve it with an oral SERD for those w/ESR1 mutations?
Second, for those planning to take Enhertu, it could be worthwhile looking at combining that with histotripsy. A recent study showed that histotripsy of MBC tends to release a lot of intact Her2, creating like a homemade Her2 vaccine in the liver. Then adding Enhertu and/or Keytruda might be able to super-charge that. It works for at least a few; last year someone w/MBC got a complete metabolic response in the liver after getting two histotripsy sessions while on Enhertu, and also someone with colon cancer liver mets, who was taking Enhertu plus Keytruda, did quite well when adding two histotripsy treatments.
And of course beyond that, are clinical trials. There is a lot of stuff in the early stage….
I hope everybody here can have a lovely holiday, and we all hope for better progress in 2027… Cheers!
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@marcials1 Sorry about your headaches but glad they have resolved. Your CA 15-3 has certainly improved from when it hit the highest. That's the marker that is used for me too. I don't get CEA because I didn't have previous cancer prior to my Stage 4 diagnosis. Not quite sure why some oncologists do both CA 15-3 and Ca 27-29 since they are used interchangeably and monitor the exact same thing. However if your oncologist wants them both done it doesn't matter as they are done with the same blood draw so no inconvenience for you.
So glad that all your scans were good and you will continue on Xeloda. With the holidays approaching it is especially great to have stability. I can't remember if I told you that I got a date for my liver MRI and it's coming up soon on November 21st so I should have more clarity after that too. Thanks for remembering and yes I started on the 2900 mg dosing yesterday. Day 2 and so far so good. Fingers crossed it continues. In answer to your question about skull mets, yes I have had skull mets since my original diagnosis back in 2018. They haven't changed at all on imaging.
Hope you are having a good week and it never hurts to become more informed about your diagnosis. Oncologists I think should like when patients advocate for themselves. Take care. Sandra
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@girlsptz My MO checks my 15-3 antigen (last one was 28.2) and the CEA antigen (last value 5.4) although I am unsure why. Perhaps she is checking for liver function since my mets are still active in my liver, although I was dxd Stage IV de novo. It is confusing but like you said, it is done on the same sample so there is no extra blood taken. My first MO said my tumor markers were unreliable and didn't check them at all. I am just thankful for consistent care.
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@cure-ious @marcials1 Thank you for sharing the information on the benefit of using histotripsy in combination with Enhertu. Sadly histotripsy isn't approved for use in Canada which is where I live. In general liver mets when you have mets elsewhere such as I do is treated differently here. I found that out recently as I had bone only disease for over 8 years and then all of a sudden liver mets popped up. I immediately inquired about getting liver ablation or at least SBRT to the lesions and was denied. The reasoning is that they don't feel there is viable benefit to the patients life expectancy when cancer remains active in another area. No amount of arguing or providing evidence to support my ask would get them to approve it. It is very frustrating but I have to let it go because we all know unnecessary stress is bad for us.
Gedatolisib isn't approved here either but even if it were I would be excluded because the clinical trials excluded people who have taken a previous mTor inhibitor(Everolimus) or any Akt inhibitor and the other exclusion is if you have taken a PI3K inhibitor which I also have taken(Capivasertib) . I am finding in general actually having taken a mTor inhibitor seems to disqualify you from many upcoming trials.
@marcials1 As for why Xeloda is used over other newer drugs…well Xeloda has been around for a very long time and has a proven track record. It's technically the only oral chemotherapy drug available as all the others are classified as targeted therapies per sec. Taking it only once a day isn't due to monetary reasons in my opinion because it is a cheap drug. The reasons behind not taking the full dose once per day say in the evening to capture the active period of MBC cancer cells is due to the short half-life of the drug, A twice-daily schedule is specifically designed to maintain more consistent therapeutic drug levels in the body to continuously target cancer cells. Consolidating a full day's dose into a single administration would spike peak blood concentration levels much higher, which could dramatically increase the risk of severe side effects while potentially reducing how well the treatment is tolerated over a full cycle.
Great conversations everyone. Sandra
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@intolight Yes there is benefit as a prognostic marker of taking the CEA and the CA 15-3 even when a patient is De Novo because research does show that concurrent rises in CEA and liver function indicators often reflect a higher overall tumor burden or active disease progression in the liver. Obviously a higher tumor burden will generally correlate to higher liver enzyme values but to me we can see that with those results themselves. However your oncologist is just following her protocol I'm sure and in general they all work with far more MBC patients that have a recurrence of their breast cancer than those diagnosed De Novo like us. Just my thoughts of course. Sandra
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