Thread: It's official
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Old 01-02-2012, 01:18 PM   #15
CoolBreeze
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Join Date: Dec 2009
Posts: 562
Re: It's official

I had that track in my mind too but it goes away. It's new to you.

L-glutamine you can buy in any health food store, or a Vitamin Shoppe or something like that. It's a powder that you dissolve into cold water. I did it three times a day: before chemo, day of chemo, day after chemo. I forget how much but it's on the container. I had neuropathy which went away. UCLA did studies on it so there is some soft science behind it. Always talk to your onc before taking anything of course.

You can take metamucil - works great. I waited for three days until I took it; I preferred to control it with diet. But, sometimes you may need a little extra help. I ate a very high fiber diet - bran cereal in the morning with a pear, lunch was lentil soup (or any progresso high fiber soup). Dinner example would be meat, brown rice, artichoke or some high fiber veggie. That mostly worked but still once in a while I'd get stopped up. I'd buy high fiber drinks at Whole Foods and if that didn't work, on day three I'd take metamucil. Worked every time.

Clariton is for before the neupogen/neulasta shots you'll get to bring your white count up. Didn't work for me but hopefully it will for you.

As for the wig, I now work in a high school but worked in a middle school at the time of my "baldness." The kids were all kind and nobody freaked out. I tried a wig but they are a different thing when bald than when you have hair. I know some women manage to wear a wig all though - two hours was all I could stand. Kids of all ages are more accepting than you know.

Anyway, you'll do fine. There are lots of treatments for mets now but you do have to find a progressive onc and be near a major cancer center. Hardly any doctor can understand why they let me do a resection for liver mets. The belief has always been that cancer is everywhere anyway so treating one section is useless. But, they are finding that isn't always the case.
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08/17/09 Dx'd.
Multifocal/multicentric IDC, largest 3.4 cm, associated ADH, LCIS, DCIS
HER2+ ER+/PR- Grade 3, Node Negative

10/20/2009: Right mastectomy, reconstruction with TE
12/02/2009: Six rounds TCH, switched to Taxol halfway through due to neuropathy
03/31/2010: Finished chemo
05/01/2010: Began tamoxifen, the worst drug ever
11/18/2010: Reconstruction completed
12/02/2010: Finished herceptin
05/21/2011: Liver Mets. Quit Tamoxifen
06/22/2011: Navelbine/Zometa/Herceptin
10/03/2011: Liver Resection, left lobe. Microwave ablation, right lobe - going for cure!
11/26/2011: C-Diff Superbug Infection, "worst case doctor had seen in 20 years"
03/28/2012: Progression in ablated section of the liver - no more cure. Started Abraxane, continue herceptin/zometa
10/10/2012: Progression continues, started Halaven, along with herceptin and zometa.
01/15/2013: Progression continues, started Gemzar and Perjeta, an unusual combo, continuing with herceptin and zometa
03/13/2013: Quit Gemzar, body just won't handle it. Staying on herceptin, zometa and perjeta.
04/03/2013: CT shows 50% regression in tumor, so am starting back on Gemzar with dose reduction, staying with perjeta/herceptin/zometa. Can't argue with success!
05/09/2013: Discussing SBRT with Radiology due to inability of bone marrow to recover from chemo.
06/07/2013: Fiducial placement for SBRT
07/03/2013: Chemo discontinued, on Perjeta, Herceptin and Zometa alone
07/25/2013: SBRT (gamma knife) begins
08/01/2013: SBRT completed
08/15/2013: STABLE! continuing with Perjeta, Herceptin, Zometa
06/18/2014: ***** NED!!!!***** continuing with Perjeta, Herceptin, Zometa
01/29/2014: Still NED. continuing with Perjeta, Herceptin. Zometa lowered to every 3 months instead of monthly.
11/08/2015: Progression throughout abdomen and lungs. Started TDM-1, aka Kadcyla. Other meds discontinued. Remission was nice while it lasted.

5/27/18: Stable. Kadcyla put me right back in the barn. I have two teeny spots on my lungs that are metabolically inactive, and liver is clean.

I’m beating this MFer. I was 51 when this started and had two kids, 22 and 12. Now I’m 60. My oldest got married and trying to start s family. My youngesg graduates from Caltech this June. My stepdaughter gave me grandkids. Life is fantastic.
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