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Old 01-18-2013, 06:36 AM   #1
DeenaH
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C-diff

I am in the hospital and diagnosed with CDiff and pneumonia. I am pretty sure I contracted it after lung surgery 1 1/2 years ago, but the tests kept coming back negative back the. I have had issues with diarrhea ever since. We assumed it was the tykerb in combo with the various chemos. FF to this past weekend. The diarrhea became so intense it was out of control. I just finnished. Gamma knife and WBR for brain mets which I'm sure adds to my ailments. So this time the cdiff culture came back positive. What can I expect? I'm worried about the state of my bowels if the cdiff has been wreaking habit for that long. Should I be asking to be scoped to check things out? Any other tests to ask for? Considering taking so many antibiotics for lung infection, I am now taking 4 at the same time.

Any input from those who have been there, done that would be helpful. How long do you think they will keep me in the hospital? Thanks for reading. This cdiff thing came out of nowhere since we thought we were done with the in 2011!

Deena
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March 2010: Diagnosed with Stage IIIC IDC with axillary, mammary and suplaclavicular node involvement. ER/PR -, HER2+++. 7cm tumor in right breast.
April 2010: Started neoadjuvent chemo. 4 DD A/C every 2 weeks, 4 DD Taxotere every 3 weeks with Herceptin weekly.
August 2010: Finished chemo!
August 20, 2010: PET/CT showed no cancer in any nodes, and only a little uptake to the breast.
September 9, 2010: Bilateral mastectomy with immediate reconstruction with implants and Alloderm.
September 16, 2010: Pathology report showed 18/51 positive axillary nodes, 3.2cm tumor. Granual sized cancer found in the fatty tissue between levels 1 and 2.
October 19, 2010: CT showed several spots on lungs and 1 spot on liver. Liver spot is 2mm, lung spots range from 2mm to 4mm. We don't know if they are cancer or not.
12/15/10: Brain MRI clear
1/7/11: PET/CT
1/13/11: Recurrence in lungs. Start Tykerb
5/13/11: Progression in lungs
6/3/11: Lung surgery to get tumors for chemosensitivity testing.
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Old 01-18-2013, 07:22 AM   #2
Hopeful
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Re: C-diff

Deena,

Coincidentally, the New England Journal of Medicine just published a paper on the treatment of CDiff:

http://www.nejm.org/doi/full/10.1056...=TOC#t=article

I am so sorry you are having to go through this. I hope you find a treatment that works.

Hopeful
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Old 01-18-2013, 07:54 AM   #3
DeenaH
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Re: C-diff

I know, poop enimas from healthy people! So gross, but I might do it if the antibiotics don't work.
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March 2010: Diagnosed with Stage IIIC IDC with axillary, mammary and suplaclavicular node involvement. ER/PR -, HER2+++. 7cm tumor in right breast.
April 2010: Started neoadjuvent chemo. 4 DD A/C every 2 weeks, 4 DD Taxotere every 3 weeks with Herceptin weekly.
August 2010: Finished chemo!
August 20, 2010: PET/CT showed no cancer in any nodes, and only a little uptake to the breast.
September 9, 2010: Bilateral mastectomy with immediate reconstruction with implants and Alloderm.
September 16, 2010: Pathology report showed 18/51 positive axillary nodes, 3.2cm tumor. Granual sized cancer found in the fatty tissue between levels 1 and 2.
October 19, 2010: CT showed several spots on lungs and 1 spot on liver. Liver spot is 2mm, lung spots range from 2mm to 4mm. We don't know if they are cancer or not.
12/15/10: Brain MRI clear
1/7/11: PET/CT
1/13/11: Recurrence in lungs. Start Tykerb
5/13/11: Progression in lungs
6/3/11: Lung surgery to get tumors for chemosensitivity testing.
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Old 01-18-2013, 09:25 AM   #4
Lani
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Re: C-diff-- "Repoopulate"--I kid you not!

C difficile: Synthetic Stool Substitute Clears Infection

Jenni Laidman

Jan 10, 2013


A synthetic stool substitute successfully ended bouts of recurrent antibiotic-resistant Clostridium difficile in a proof-of-principle study published January 9 in the inaugural issue of Microbiome.

The study, which involved just 2 patients, suggests the promise of an off-the-shelf alternative to the transplantation of donor stool to control antibiotic-resistant intestinal bacteria.

Elaine O. Petrof, MD, assistant professor, Department of Medicine, Infectious Diseases, Kingston General Hospital, Queen's University, Ontario, Canada, and colleagues created the human synthetic stool mixture by culturing the stool microbial diversity of a healthy 41-year-old woman and brewing a mixture of 33 different intestinal bacteria isolated in pure culture. They named the synthetic stool mixture RePOOPulate.

The bacterial mixture was infused into the colon of 2 patients in their 70s, both of whom were infected with a hypervirulent strain of C difficile, ribotype 078, and who had failed at least 3 courses of antibiotic therapy.

Both patients returned to normal bowel patterns in 2 or 3 days and remained symptom-free for 6 months. At that time, rRNA sequences representing the RePOOPulate mixture made up 25% of the gut bacterial population.

"It's an interesting paper and pretty exciting," Colleen Kelly, MD, a gastroenterologist from the Center for Women's Gastrointestinal Medicine at the Women's Medicine Collaborative, Providence, Rhode Island, told Medscape Medical News in an email. Dr. Kelly was not involved in the current study.

"I've been doing fecal transplants for nearly 5 years and have treated 90 patients with about a 94% success rate. Identifying a suitable donor can be difficult in some patients. Also, the cost of donor screen labs (which is not always covered by insurance) is expensive. The process of donor eligibility determination is time consuming, and some doctors face institutional barriers that prevent them from offering [fecal microbiota transplantation]. If a safe, effective product was available, many more patients could be treated with [fecal microbiota transplantation]. Additionally, this compound would make the necessary clinical trials much easier to do." Dr. Kelly is involved in what is considered the first randomized trial of fecal transplant for recurring C difficile.

C difficile, a Gram-positive, anaerobic bacillus that produces a toxin, is the source of 15% to 25% of antibiotic-associated diarrhea.

Researchers in the Canadian study cultured 62 different bacterial isolates from donor stool, identifying them by 16S rRNA gene sequencing and profiling them for antibiotic susceptibility. Any isolate resistant to antibiotics was eliminated. The result was 33 isolates sensitive to a range of antibiotics and relatively easy to culture under anaerobic conditions. The researchers used the profile of a healthy donor as a guide to relative abundances of species to include in the probiotic mixture. The purified intestinal bacterial cultures were grown in "Robo-gut" equipment that mimics the environment within the large intestine.

The authors note that the creation of a synthetic mixture allows for control of the composition of the bacteria the patient will receive in a reproducible species mix. It also eliminates the worry of viruses or other pathogens that can ride along in donor stool.

In the past, researchers have tried single probiotics in attempts to clear C difficile infection. "They have not really ever [been] shown to manage multiply recurrent C diff," said Cliff McDonald, MD, chief, Prevention and Response Branch, National Center for Emerging and Zoonotic Infectious Diseases, Centers for Disease Control and Prevention, Atlanta, Georgia. "I think it's conceivable [to use] a cocktail or several cocktails — there might be quite a few that work pretty well. It might be hard to say which cocktail works better than the other. It may depend upon the people treated, too," Dr. McDonald told Medscape Medical News. He was not involved in the Microbiome study.

Dr. McDonald also noted that a group from the Sanger Institute published a paper in October 2012 in PLoS Pathogens reporting the successful use of a cocktail of 6 bacteria to clear C difficile infection in mice.

The results of the Canadian study are "fantastic," said Mayur Ramesh, MD, senior staff physician in infectious disease, Henry Ford Hospital, Detroit, Michigan. "That's what everybody's looking for, including our own team." Dr. Ramesh has developed a simplified method of preparing donor stool for transplant and treatment of C difficile infection, but was not involved in the current study.

A synthetic substance could resolve the significant "yuck" factor that makes physicians unwilling to perform stool transplants, according to Dr. Ramesh. "Nobody wants to do it," he said.

Patients, in contrast, accept the treatment easily. "I have not a single patient refuse. I have people fly in from California, and I'm in Detroit," he said. "American doctors are shunning things like this, even though it saves lives. This is the best treatment for C difficile."

The newly published study included a 74-year-old white woman who suffered 6 episodes of recurrent C difficile infection during 18 months after orthopedic surgery and preoperative treatment with cefazolin, and a 70-year-old white woman who had 3 episodes of recurrent C difficile infection after treatment with cefazolin for cellulitis. Both women received additional antibiotics after the probiotic transfer. One patient received several courses for recurrent urinary tract infection and the second for recurrent cellulitis. Still, by the end of 6 months they had no return of C difficile infection symptoms and maintained a diverse population of gut bacteria.

Recurrent C difficile infection is largely a result of the inability of normal intestinal flora to recover from antibiotic treatment.

This work was supported by the Southeastern Ontario Academic Medical Association and the Physicians’ Services Incorporated Foundation, as well as a University of Western Ontario Academic Development Fund grant. Dr. Petrof and 2 coauthors have a provisional patent together. The other authors, Dr. Kelly, Dr. McDonald, and Dr. Ramesh have disclosed no relevant financial relationships.

Microbiome. 2013;1:3.
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Old 01-18-2013, 11:07 AM   #5
StephN
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Re: C-diff

So sorry about all that! My mother had a bout with c. diff several years back, and it was not until she went to a gastro intestinal specialist who was smart that they diagnosed it. She did have the scoping tests which showed where the infection was lodged. At least she did not have to have a full scale episode and lengthy hospitalization before they decided that was her problem.

About the poop treatment. I have a friend who had one early last year. Her son was the donor, and she really got some relief pretty quickly. Thankfully all is still well in that department, so this may be something you want to do sooner rather than later. Those many courses of antibiotics have side effects, and hopefully you can get things to a point where they feel the PT is a good option.
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MY STORY SO FAR ~~~~
Found suspicious lump 9/2000
Lumpectomy, then node dissection and port placement
Stage IIB, 8 pos nodes of 18, Grade 3, ER & PR -
Adriamycin 12 weekly, taxotere 4 rounds
36 rads - very little burning
3 mos after rads liver full of tumors, Stage IV Jan 2002, one spot on sternum
Weekly Taxol, Navelbine, Herceptin for 27 rounds to NED!
2003 & 2004 no active disease - 3 weekly Herceptin + Zometa
Jan 2005 two mets to brain - Gamma Knife on Jan 18
All clear until treated cerebellum spot showing activity on Jan 2006 brain MRI & brain PET
Brain surgery on Feb 9, 2006 - no cancer, 100% radiation necrosis - tumor was still dying
Continue as NED while on Herceptin & quarterly Zometa
Fall-2006 - off Zometa - watching one small brain spot (scar?)
2007 - spot/scar in brain stable - finished anticoagulation therapy for clot along my port-a-catheter - 3 angioplasties to unblock vena cava
2008 - Brain and body still NED! Port removed and scans in Dec.
Dec 2008 - stop Herceptin - Vaccine Trial at U of W begun in Oct. of 2011
STILL NED everywhere in Feb 2014 - on wing & prayer
7/14 - Started twice yearly Zometa for my bones
Jan. 2015 checkup still shows NED
2015 Neuropathy in feet - otherwise all OK - still NED.
Same news for 2016 and all of 2017.
Nov of 2017 - had small skin cancer removed from my face. Will have Zometa end of Jan. 2018.
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Old 01-18-2013, 01:24 PM   #6
IrvineFriend
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Re: C-diff

We were talking about this study at work yesterday (we manufacture a test for C. diff) and can't imagine how someone came up with the idea?!

I hope you start feeling better soon but it is hard to treat as it's resistent. This new treatment seems very effective -- I would just have to keep my mind off what I've been infused with!

-Julie
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Diagnosed with DCIS Oct. 2012

Bilateral Dec. 19, 2012
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First thing each morning, I try on my bathing suit. Then, nothing worse can happen the rest of the day.
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Old 01-18-2013, 02:47 PM   #7
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Re: C-diff

I'm so sorry to hear Deena - I had a mid case of C-diff that was healed well with Flagyl - caught very early I think. I'm sorry to hear you have been dealing with brain mets too - are you still on your cocktail that saw big reduction in your lung disease ?
I wish you well - interesting advice here A xxx
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40 year old Mum to three gorgeous kids - son 5 and daughters 8 and 11
Wife to my wonderfully supportive husband of 17 years!
22 February 2011 - Diagnosed Early Breast Cancer IDBC Stage2b (ER/PR -ve, Her2+ve +++) - 38 years old
(L) skin sparing mastectomy with tissue expander, axilla clearance (2/14 affected) clear margins.
Fec*3, Taxotere and herceptin*2 - stopped due to secondary diagnosis

June 24 2011 Stage IV - Skin met, axilla node, multiple lung lesions

Bolero3 trial - Navelbine, Hereptin weekly, daily Everolimus/Placebo
February 2012 - July 2012 Tykerb and Xeloda - skin mets resolved, Lungs initially dramatically reduced but growing again
August 2012 (turn 40!) tykerb and herceptin (denied compassionate use of TDM1) while holidaying in Italy!
September 2012 - January 2013 TDM1 as part of the Th3resa trial - lymph nodes resolved, lungs slowly progressing.
January 2013 - herceptin, carboplatin and Perjeta (compassionate access)
April 2013 - Some progression in lungs and lymph nodes - Abraxane, Herceptin and Perjeta
July 2013 - mixed response - dramatic reduction of most lung disease, progression of smaller lung nodules and cervical and hilar nodes - ? Add avastin.
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Old 01-18-2013, 04:30 PM   #8
KDR
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Re: C-diff

Deena,
This is just unbelievable! Whatever your team decides is best for you, get well soon! I cannot fathom all of this at once, but I know you will get through it...
Warmly,
Karen
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Old 01-18-2013, 05:14 PM   #9
Becky
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Re: C-diff

Cool Breeze also went through this last summer. You should private message her.
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Becky

Found lump via BSE
Diagnosed 8/04 at age 45
1.9cm tumor, ER+PR-, Her2 3+(rt side)
2 micromets to sentinel node
Stage 2A
left 3mm DCIS - low grade ER+PR+Her2 neg
lumpectomies 9/7/04
4DD AC followed by 4 DD taxol
Used Leukine instead of Neulasta
35 rads on right side only
4/05 started Tamoxifen
Started Herceptin 4 months after last Taxol due to
trial results and 2005 ASCO meeting & recommendations
Oophorectomy 8/05
Started Arimidex 9/05
Finished Herceptin (16 months) 9/06
Arimidex Only
Prolia every 6 months for osteopenia

NED 18 years!

Said Christopher Robin to Pooh: "You must remember this: You're braver than you believe and stronger than you seem and smarter than you think"
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Old 01-18-2013, 08:23 PM   #10
jellybean
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Re: C-diff

Hi Deena,

I am sorry you are in the hospital and you have c-diff and pneumonia. Cancer is more than enough, I think!

I read an article recently, and the poop transplant is extremely effective. I know it seems really gross, but the chances are very high it will help get rid of your C-Diff. I would go for it.

Take care,


Jill
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Old 01-19-2013, 01:04 AM   #11
Pray
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Re: C-diff

I also am so sorry this all going on. Please know that you are in my prayers. Gods blessings to you.
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ER 98% PR 80%
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6 rounds TCH
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Old 01-20-2013, 11:29 AM   #12
NEDenise
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Re: C-diff

Sheesh, Deena!
And people think I'm having a rough streak of luck lately!
Try to take deep, calming breaths and hang in there.
Sending gentle hugs
Denise
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1/11-needle biopsy
2/11-Lumpectomy/axillary node dissection - Stage 3c, ER/PR-14/17 nodes
3/11 - Post-op staph infection,cellulitis, lymphedema,seroma,ARRRGH!
4/12/11-A/C x 4, then T/H x 4, H only,Q3 weeks
8/26/11 finished Taxol!!!
10/7/11 mastectomy/DIEP recon
11/11 radiation x28
1/12/12 1st CANCER-VERSARY!
1/12 Low EF/Herceptin "Holiday" :(
2/12 EF up - Back on Herceptin, heart meds
4/2/1212 surgery to repair separated incision from DIEP recon
6/8/12 Return to work :)
6/17/12 Fall, shatter wrist,surgery to repair/insert plate :(
7/10/12 last Herceptin
7/23/12 Brain Mets %$&#! 3cm and 1cm
8/10/12 Gamma knife surgery, LOTS of steroids;start H/Tykerb
8/23/12 Back to work
12/20/12 Injure back-3 weeks in wheel chair
1/12/13 2nd CANCER-VERSARY!
1/14/13 herniate disk in back - surgery to repair
1/27/13 Radiation necrosis - edema in brain - back on steroids - but not back to work - off balance, poor cordination in right arm
5/3/13 Start Avastin to shrink necrosis
5/10/13 begin weaning steroids
6/18/13 Brain MRI - Avastin seems to be working!
6/20/13 quarterly CT - chest, abdomen, pelvis - All Clear!
7/5/13 finally off steroids!!
7/7/13 joined the ranks of the CHEMO NINJAS I am now Tekuto Ki Ariku cancer assassin!
7/13/13 Symptoms return - back on steroids
7/26/13 Back on Avastin - try again!
8/26/13 Not ready to return to classroom yet :( But I CAN walk without holding onto things! :)
9/9/13 Brain MRI - fingers crossed
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Old 01-21-2013, 06:03 PM   #13
CoolBreeze
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Re: C-diff

My infectious disease specialist said I had one of the worst cases of c-diff he ever saw where the person survived with their colon. When I had c-diff I ended up in ICU and in the hospital for 7 days. I got Pseudomembranous pancolitis. They almost took my colon out, and said if my blood pressure dropped one more point they would, but fortunately, I responded to the flagyl and vancomycin they gave me. Good thing too as that surgery only has a 20% survival rate.

It was the worst experience of my life and it took me months to recover.

Now I cannot take antibiotics ever again. Great thing for a cancer patient.

If it ever comes back, I will request the fecal transplant immediately.

People do have it off and on for years, and it is notorious for not showing up in stool cultures. People should have three cultures now, and if any one is positive than you know you have c-diff. It also has that distinctive smell so isn't hard to diagnose.

From now on, do not take antibiotics except vancomycin or flagyl. Antibiotics will wipe out your good gut flora and let the c-diff take over and it turns to poison in your colon Eat yogurt daily, a good yogurt. Eat kaffir. You want to do the opposite of a healthy diet with this - no fiber until your colon heals. You also need to take probiotics - they will put back some of the good flora - I took Florastor and Culturelle. Still take them, actually but one is a yeast so don't do it daily.

If your colon was damaged (as mine was) you would know. I had great pain, swelling, etc.

It depends on the severity how long you will be there. They put me on a no food diet to let me colon heal, then gradually added in liquids. I met with a nutritionist before I left to learn how to eat for c-diff.

When you get home, you need to wash all your clothes and your sheets in hot, soapy water with bleach. Also, you will need to bleach down your house. C-diff is caused by a spore that can live for MONTHS outside the colon. It is killed with hot water and bleach. It is not killed by hand sanitizer. You can re-infect yourself if you aren't careful. You also will now need to be obsessive about washing your hands, for at least six months.

I'm very sorry to hear that you have this terrible disease.

The traditional treatments are flagyl, vancomycin. If those don't work, there is a new one called dificid. And, then fecal transplant, which is gaining traction in the medical world.

Good luck. Lots of us with lowered immune systems get it - it is rampant in hospitals. I got mine shortly after my liver resection. The c-diff was a LOT worse than having my liver removed.
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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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Old 01-22-2013, 08:51 PM   #14
7andcounting
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Re: C-diff

Deena, Thinking of you and praying for your swift recovery. So sorry you have to fight additional crud. You are being being brave, as always, in the face of daunting circumstances. You are such a fighter. Thank you for inspiring so many by your courage, spunk and drive.

Hugs to you,

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