8 years out this week with Stage IV

Annie4
Annie4 Member Posts: 109
edited June 2014 in ILC (Invasive Lobular Carcinoma)

Hi all,



I was diagnosed at age 43 with ILC at Stage IV. It had spread to my peritineum and bones. It has progressed to my liver and I have had ascities at presentation and through the years but I am feeling great right now.



I thought a recap of my history may be helpful. Finished my last chemo 3 weeks ago (adriamycin cytoxan, whew, that was a very tough one) but my tumor markers have gone down almost 70% since June when I was one very sick puppy.



Here is a recap of treatments as best as I can remember with chemo brain.



Taxotere - worked - 8 treatments

Arimidex - worked for a year

Aromosin - did not work

Faslodex - one shot - worked for 5 months

Androxy - male hormones - worked for 9 months but had hair in very weird places, gained a hell of a lot of weight, and wanted to watch football and drink beer - no kidding!!!

Estrodial - did not work

Xeloda - so hard on me and didn't work - 4 months

Naturapathic IV's - worked for 9 months!!!! Just antioxidant IV's and some Ozone therapy. - felt great! But then progressed

Halavan - stablized but didn't work very well - 5 months

Faslodex - double shot - worked for about 5 months

Abraxane - kept it stable for a while, 5 months and then progressed

Navelbine - only 6 weeks and markers and symtoms went crazy! Ended up in hospital

Then a/c in June until now



Now, doing Oncomar (a naturapathic fermented wheat germ) with Aromasin for 2 months and will get tumor markers then. If not stable, will go on Afinitor. Hoping this works. This is the pill form of Avemar. Anyone else doing this, did this? Oncomar costs $139 a month from my Naturapath. Also, I started disgusting tasting Chinese Herbs about 5 weeks ago which has given me amazing energy! I go to Dr. Kamto Lee in Portland, OR. And have been doing reiki too for over 2 years. Helps keep my head on straight. Try to eat healthy but probably cheat at least 30% of the time! Hard with 2 teenage girls at home!



So there you have it! Didn't think that I would live to see my girls to high school, but here I am still! And even went out to eat this weekend at a Thai restaurant and did fine! And try to laugh and love sicko humor! And I do have a wonderful husband, family and supportive friends which I know helps a lot.



My love to you all,



Annie













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