We are 226,651 members in 82 forums discussing 158,896 topics.

Help with Abbreviations

Topic: Xeloda question (never thought I'd do chemo)

Forum: ILC (Invasive Lobular Carcinoma) — Just diagnosed, in treatment, or finished treatment for ILC.

Posted on: Jun 12, 2019 08:16PM

jojo68 wrote:

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!

2012 Stage 3 Lobular Er+/Pr+/her-/Grade 2 7 nodes +/2014 marrow mets/2018 Mets to Bones/ovaries and peritoneum
Log in to post a reply

Page 1 of 1 (6 results)

Posts 1 - 6 (6 total)

Log in to post a reply

Jun 12, 2019 10:27PM AllyBee wrote:

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

Dx 11/2016, IDC, Right, 1cm, Stage IIB, metastasized to brain/other, Grade 3, 2/13 nodes, ER-/PR-, HER2- Surgery 12/21/2016 Lumpectomy: Right; Lymph node removal: Right, Sentinel, Underarm/Axillary Dx 6/2018, IDC, Stage IV, metastasized to brain/other, ER-/PR-, HER2- Surgery 7/3/2018 Chemotherapy Carboplatin (Paraplatin), Gemzar (gemcitabine) Radiation Therapy Whole-breast: Breast, Lymph nodes Chemotherapy AC + T (Taxol)
Log in to post a reply

Jun 12, 2019 10:32PM jojo68 wrote:

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

2012 Stage 3 Lobular Er+/Pr+/her-/Grade 2 7 nodes +/2014 marrow mets/2018 Mets to Bones/ovaries and peritoneum
Log in to post a reply

Jun 13, 2019 12:17AM ShetlandPony wrote:

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.

2011 Stage I ILC ER+PR+ Her2- 1.5 cm grade 1, ITCs sn . Lumpectomy, radiation, tamoxifen. 2014 Stage IV ILC ER+PR+Her2- grade 2, mets to breast , liver. Taxol NEAD. 2015,2016 Ibrance+letrozole. 2017 Faslodex+Afnitor; Xeloda. 2018,2019 Xeloda NEAD
Log in to post a reply

Jun 13, 2019 01:10AM - edited Jun 13, 2019 01:16AM by 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???

2012 Stage 3 Lobular Er+/Pr+/her-/Grade 2 7 nodes +/2014 marrow mets/2018 Mets to Bones/ovaries and peritoneum
Log in to post a reply

Jun 16, 2019 01:06PM - edited Jun 16, 2019 01:11PM by 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?

2011 Stage I ILC ER+PR+ Her2- 1.5 cm grade 1, ITCs sn . Lumpectomy, radiation, tamoxifen. 2014 Stage IV ILC ER+PR+Her2- grade 2, mets to breast , liver. Taxol NEAD. 2015,2016 Ibrance+letrozole. 2017 Faslodex+Afnitor; Xeloda. 2018,2019 Xeloda NEAD
Log in to post a reply

Jun 16, 2019 01:15PM jojo68 wrote:

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.

2012 Stage 3 Lobular Er+/Pr+/her-/Grade 2 7 nodes +/2014 marrow mets/2018 Mets to Bones/ovaries and peritoneum

Page 1 of 1 (6 results)