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Old 12-31-2011, 04:54 PM   #18
CoolBreeze
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Join Date: Dec 2009
Posts: 562
Re: Update from me - C-Diff Colitis

Funny joke!

The connection to antibiotics has to do with your gastrointestinal tract. When you take antibiotics, it wipes out the natural "flora" in your intestines. Most people recover from this just fine, don't even notice it. But, for those of us who are immuno-compromosed, and have been exposed to a c-diff spore (typically after a hospitalization), it causes a huge problem. The c-diff infection multiplies in your intestines and puts out two kinds of toxins which can actually destroy your colon. Which, is what almost happened to me. Vancomycin can get the c-diff infection under control, but the spores can live on hard surfaces for months, which is why people relapse. (It is also pretty hard to kill inside the intestines).

Alcohol wipes don't kill it, you have to use bleach and wash your hands. I had my husband wipe my bathrooms down with bleach from head to toe when I got home and I need to do it again but still am not feeling well. He cut his finger so don't want him to.

The way you can repopulate the intestinal flora is to take probiotics. My doctor suggested it - said the science was soft but there was some. I take Florastor and Culturelle. I also eat yogurt daily (love Fage) and I try to drink kefir but don't care for it much.

Another way for curing relapsing c-diff is a fecal transplant. I would have thought that the grossest thing in the world (feces from one person goes into you) until I got this. Now I know c-diff is the worst thing and you'll do ANYTHING to get rid of it.

Because it's an epidemic it's important that people wash their hands when they come see you in the hopital, since most of us probably have underlying problems. Don't worry about upsetting them - I was in isolation and one person came in ungowned and ungloved - rather than getting upset when I reminded him, he was thankful. I told him I didn't want anybody else to get it and he agreed! Hospital personal get so busy they sometimes forget - we can do our part in helping prevent it by reminding them to wash their hands and not just use the alcohol gel. Anybody with cancer needs to get into that habit.

As for France, I think they are ahead of the game. The reason this is a problem is it has become resistant to other antibiotics, and there are strains that are becoming resistant to the only two that will treat them - flagyl and vancomycin. It's called a "superbug" for that reason. So, it's scary. People have overused antibiotics for years and it's good when they don't anymore.

Every surgery I've had, even a small one like putting in a port, or a biopsy on the liver, they gave me antibiotics as a preventative. I think they need to rethink that and give it as necessary, just "just cuz."

Anyway, now I will be unable to take antibiotics ever again, so I hope I don't have a bladder infection, as I suspect. (Although my cdiff started out feeling like a bladder infection so I kind of hope I do!)

Another thing: don't get a serious illness around the holidays. It's like Canada or the UK here now - everybody is on vacation and they all take them at the same time! I remember when doctors only took Christmas Day off and shared practices, now it's a week before and a week after and nobody else seems to want to take on another doctors patient. It's either ER or wait nowadays. I'd still be waiting for an appointment if I didn't have a friend who was a doctor who got me in.

Anyway, c-diff is nothing to take lightly and everybody should know about it. Some people have mild cases; most don't have it like me. But, if you take antibiotics and then get diarrhea, you should suspect it and ask for a test. It can kill you if you wait.

*hugs*
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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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