Xeloda question (never thought I'd do chemo)

jojo68

Hi there!

I am not on here often.

I am a 7 year survivor ER+/PR+/HER- Lobular, 5 years being stage 4 ....only surgery. Never did chemo, rads or hormonals.

I have mets to peritoneum, bones, marrow and ovaries. I am doing pretty well thus far. Had ascites last year and was drained...was able to keep it away with Albendazole for a full year. Now ascites have been back and drained twice. I am doing Hoxsey Tonic, Chinese herbs, jane McLelland's protocol etc.....I need to add a kill phase to my repurposed drug protocol (jane McLelland) and am considering Xeloda. My question is....side effects? Does Lobular respond well to Xeloda? I havent asked my onc yet but wondering if I would be allowed to go straight to Xeloda and bypass other chemo drugs?

Thanks so much for any help you can give me!

AllyBee

Hi JoJo,

There's a thread called "All About Xeloda", it has lots of information on side effects and how people are dealing with them. Main side effects for me were hand and foot issues (peeling/burning pain) and diarrhea but I've reduced my dose by 500mg and side effects are virtually gone now. Most people seem to tolerate it pretty well and more convenient than IV chemo.

Hope that helps a little.

Ally

jojo68

Thank you! I had posted it here under Lobular because I had heard Lobular doesnt respond as well to chemo as others but I will chk that thread too...thanks so much

ShetlandPony

Hi Jojo. Fellow ILC metster here (liver mets).

As I understand it, early stage ILC is less likely to have a complete pathologic response to chemo, and is likely to respond to hormonal therapy well. I think that is the source of the tiresome “ILC doesn’t respond to chemo” saying. BUT BUT BUT By the time cancer has become metastatic it has changed, mutated to a different beast. For me, the two best mbc treatments have been chemos. Five cycles of Taxol at mbc diagnosis saved me. And currently on Xeloda which took me to NEAD immediately (no evidence of active disease) and has kept me there for two years so far.

As far as being allowed to take Xeloda, it seems to be the go-to first chemo after going through the anti-estrogen therapies. The anti-estrogens can be paired with targeted therapies like Ibrance. But if your situation is getting dangerous, four to six cycles of an IV chemo like Taxol first would probably be suggested.

jojo68

Thank you so much! I really prefer not to take an anti estrogen and prefer a lower dose chemo like Xeloda...wonderful news about your ned! I'm going to talk to my oncologist...

My oncologist wants me on Tamoxifen as I'm premenopausal but I always heard it's also not as effective with lobular???

ShetlandPony

There is some data to say that a subset of ILC may be de novo resistant to Tamoxifen. It may have to do with Luminal A vs. Luminal B, or with a difference in estrogen receptor. Can you get a test to determine Luminal A vs. B? The oncs always start with anti-estrogens because they think they are easier on us thanchemo, but I'm not sure they are easier than Xeloda for some of us. To give you Xeloda first will be bucking the way it's done, but why not talk about it. If it has to be hormonal therapy, and you don't take tamoxifen, of course you would need ovarian suppression/removal and an aromatase inhibitor or faslodex. Adding a targeted therapy optional. Your situation (age, subtype, mets locations, preferred treatment) is not the usual stuff. Are you at a NCCN cancer center?

jojo68

My oncologist is at Upenn in Lancaster Pa and is very patient with me LOL...as I do a very integrative approach. I do repurposed meds to block cancer pathways as per Jane Mclellands protocol....I also do Hoxsey Therapy and Chinese herbs...shes amazed I have kept myself alive stage 4 for 5 years with no hormonals, chemo or radiation. I will ask her about the xeloda possibility. Low dose chemo is used sometimes as kill phase after the starve phase as per a certain protocol I follow.