8 years out this week with Stage IV

Annie4

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

Moderators

Congratulations on being eight years out!!!- That is such great news- Thanks for sharing your inspiring story.

Best wishes

The Mods 

Annie4

Thank you!



Annie

TKSit

Thank you for sharing, Annie! You are an inspiration. (Hope the Thia food didn't give you hot flashes.)

Annie4

Hot flashes are a given! But completly worth it! Even the burning in my mouth! Just so darn tasty!

geewhiz

So wonderful Annie!! How amazing for you! Many many more years to you!!

Angelfalls

Congratulations, Annie! Here's to the next 8... And the next... And the next!!!

NaniAlice

Great to hear Annie! I would do a dance of joy for you but I just had my treatment today and I'm trying to hold my cookies down. But as soon as this passes, I will do the dance of joy.



Big hugs from Alice

OBXK

Thank you so much for sharing.

Gitane

You are one inspiring ILC sister!!! Thanks for sharing your story with all of us!

toomuch

Annie - I hope that you get to continue Aromasin and Oncomar for a good long time. Glad you were able to celebrate!

MaureenA

Absoultely fabulous news! Thank you so much for sharing it with us.  Sending good thoughts and wishes for many, many more years.

Bighair

Annie,

This gives me such hope.  Thank you.  I was diagnosed in July with stage 4 ILC with mets to the stomach, liver, small bowel, and bone.  My first diagnosis was 12 years ago.  ILC lurked in me for 12 years before I found it again. 

momof3boys

Big hair- I'm so sorry you're dealing with this again. What was your treatment and follow up care over the past twelve years?

Anonymous

Big Hair, I'm curious to know follow up and treatment, and if you took any supplements or exercised, changed diet during those 12 years, etc.

Claire 

dx ILC 9/11, 6/11 nodes, 2 c. grade 1 st. II: lumpectomy, DDACT, 33 rads, BMX/recon to come.

Crescent5

Congratulations Annie! Thank you for sharing!

Heidihill

Congratulations! So great to hear you are responding to your current tx! 70 percent down is awesome.

hopeinfitcher

Annie,thank you for sharing!many years ahead!

lukefrancis1

you are a true inspiration! Hugs and best wishes for 2012!

bean

Annie ~ You're an inspiration! 

Hi everyone ~ I joined your board about a month because I had a little scare . . . It's benign, thank God.

Now I'm here for my sister. She had ILC 10 years ago. Went through chemo, radiation, etc. Although the cancer had metasisized to an area in her mid section/abdomen (not sure exactly where), she was said to be cancer free a year later.

So now, unbeknownst to me, she has been throwing up a lot for the past month, especially after eating fatty foods. Her boss was finally able to convince her to go to the ER (I live in a different state), and she's been in the hospital now since last Thursday. She had a colonoscopy which showed a "blockage". She is in surgery right now as I write this to remove this blockage.

I just got off the phone with my dad who told me that she also had an MRI that showed two "bone lesions". I'm sure my sister has withheld this information from me so that I wouldn't worry. I'm already convinced that her "blockage" is cancer. I am freaking out that these bone lesions are cancer too and that they are going to find her whole body revenged with cancer. She's a strong woman and I know she can fight, but I'm so scared that she is going to be one of those people you hear about that go in for a tummy ache and die a few months later. She's 50 years old.

Has anyone here had their ILC metasizied to their bones or colon? What should we expect? HELP!   :-(

Leah_S

Annie, how wonderful!

Here's to 8X8 more years!

Leah

hlya

Thanks!

beth1965

Congrats to you Annie thanks for sharing and inspiring xoxoxox

antonia1

Annie, you are truly an inspiration. Stay well.

jojo68

CONGRATS!!!  Haven't heard how things are lately?  Still on Oncomar and how are the chinese herbs working?  I am considering seeing DR. Wong in NYC for chinese herbs to prevent mets...xxoo

Annie4

Hi All,



Well, an update. I had almost 6 wonderful months on the aromasin and oncomar and Chinese herbs. But, progression again. Now on Afinitor and aromasin . Very very hard drug for me. Was on for 10 days at 10mg and then severe mouth ulcers, fatigue, pains, headaches. Went off for 2 weeks now on again, trying 1/3 or a dose. I cut it myself. Did try to go up to 5 mg today but already have a blister on the rood of my mouth which I pray doesn't open up. Really hate this drug's side effects. At least with chemo you have some good weeks. But do have my hair.



Annie. (Now 8 1/2 years out this week). But who's counting.....ME

lemon68

Congrats Annie, thank you so much for sharing your information. Keep us updated sounds ILC picked the wrong woman!

Annie4

Thanks so much! Keep the hope!



Annie

leggo

Hi Annie. I don't know how I missed this the first time you posted. Thank you for sharing. A true inspiration!!!

Heidihill

Congrats! Hope you start feeling better soon. Halves definitely count.

kaza

Thankyou for sharing Annie, x