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This thread is very interesting to me, in that the Xeloda almost did me in back in 2003. A little over a week into my therapy, while walking to the bathroom, I just blacked out. I fell and hit my head pretty hard. Ouch!
Anyway we called my Doc and he said to immediately quit taking the X. Within a few days of stopping the X, I developed a fever and pretty bad diarrhea. Being the brilliant one that I am, I just figured I was coming down with something and didn't call the doc right away. By the time I realized I was really sick and got to the hospital, it took everything they had just to save me. I had transfusions of blood and plasma and was on 4 different "big gun" antibiotics to try and get the infection under control. I was there for about 8 days and lost 15 pounds.
My doctor said that I most likely, bacteria from my intestines got into my bloodstream because of how ravaged my GI tract was, and that's why I was so sick, not to mention the Xeloda had totally wiped out my blood counts. It was like having the high dose chemo all over again, without the stem cell transplant.
The doctor later said that for some reason I wasn't able to metabolize the Xeloda and it just kept building up in my system to very toxic levels. He also said that he would never give me Xeloda again. I asked him if we might just use a much lower dose if I were to ever need chemo options again and he said he just didn't feel good about it. He never mentioned anything about me lacking an enzyme, so I doubt he knew about it.
So although my experience with Xeloda was not good, I often wonder if it is part of the reason I have been NED( in my body) for a good while . I'm always trying to find the good in things, and so I figured since the Xeloda almost killed me, maybe it scared those cancer cells away too!
Hopefully they will learn more about this enzyme and maybe figure a way around not having it for those women and men who may need Xeloda.
Just my musings on a very interesting subject!
Kim
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Diag. Feb 1997 4.5cm IDC <10%ER+, PR-. 5 out of 36 nodes +. Mastectomy followed by 3 rounds Adriamycin/Cytoxin.
5/1997 Hi Dose Chemo w/ Stem cell rescue. Spent 4 weeks in isolation ward. Then 6 weeks radiation.
9/2001 widespread mets to liver. 8 mos Taxotere/Herceptin brought me almost to NED. Stop Taxotere & add Femara .
11/2002 liver resection to remove spot that turned out to be necrosis. Officially NED!
7/2003 Tumor markers rising add Xeloda Disastrous reaction, 8 days hospital, but tumor markers came back to normal!
June -Dec 2004 UW Vaccine Trial.
7/2005 MRI single 11mm brain met
8/2005 Gamma Knife.
Brain MRI @3 months NED!
2006-2011 brain/body still NED
8/04/11 Taking Herceptin break, will monitor with tumor markers.
6/20/12 Tumor markers begin to rise. CA15-3 is 31.3 and Her2 Serum is at 17.1 Decide to repeat in one month.
7/23/12 CA15-3 now 49.3
Her2 Serum 26.8
8/6/12 Back on Herceptin
CA15-3 now 76
Her2 Serum now 49
11/7/12 Add weekly Taxotere for 4 cycles
2/2013 Stopped Taxotere added Perjeta. MRI shows approx. 50% reduction liver mets. CA15-3 still elevated @ 55. Will continue on just Herceptin & Perjeta.
November 2014 Continuing on Herceptin, Perjeta, and
Femara indefinitely. Guess I'm NED again, but watching those tumor markers carefully!
Dec. 2015 PET scan reveals mass in perirectal area of abdomen.biopsy confirms. Still Her2+, but no longer ER+. Bye bye Femara
Jan 2016 Begin Kadcyla
March 2016 PET scan shows tumor now barely visible, still NED everywhere else.
2016/2017 continue Kadcyla
November 2017 brain MRI reveals small focus of T2 hyperintensity with possible 4mm enhancing nodule. Short term follow up MRI suggested. Stay tuned...
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