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rtshinn
Member since Mar-7-07
128 posts
Oct-27-09, 12:45 PM (PST)
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"Our results so far"
 
   Hey where is everyone? Haven't seen much around here lately.

I've held off telling our story for a long time now, since the story is still ongoing, but perhaps you may find it interesting and helpful anyway, so finally, here goes:

My wife got Breast Cancer for the first time back in 1998. We knew of the lump for a couple of years (!), but since the breast tissue was dense it would never show up on the mammogram so her idiot gynocologist kept telling her to quit drinking caffeine. She dutifully started drinkling decaf tea, but the lump kept getting larger. Finally, her GP told her to go get a needle biopsy, a simple procedure that is much more valuable than a mammogram in my opinion. Needless to say, we were way to trusting in the knowledge of others at this point.

The results came back, cancer. We went thorugh the typical regimen, but in a slightly atypical (at that time )order. First we had chemotherapy, which shrank the tumor very quickly, then a lumpectomy, more chemo, and radiation. The hair fell out, and grew back, etc. etc. Good news, no lymph node involvement.

Five years later, she was considered 'cured'. We put that little unpleasant episode behind us.

All along, I had been become interested in how the 'War on Cancer' was going, had kept tabs on the latest developments, and was still doing so, when on January 17, 2007 I read the article in New Scientist website about DCA (Cheap Safe Drug Kills Most Cancers). Eight days later, on January 25th, we found out that Kathi's cancer had returned and had metastized to the Brain. Later we would find out the lung was involved, too.

We found out because she had a 'focal sizure' on her foot, which caused the foot to move involuntarily. We thought maybe she was having a mini stroke or something, but an MRI showed a 1.7cm tumor, and various small tumors in the brain. As you all know from experience, that was a very bad day.

We saw Kathi's Radiation Oncologist (I think that's her title), who told us that she had 2-4 months to live. Talk about a bad day... She suggested Whole Brain Radiation since there were probably microscopic cancer cells in the brain along with the 4 - 7 other suspicious spots.

By this time, I had started reading like a madman again, and asked why they don't do Stereotactic Radiation instead of whole brain, but they felt the microscopic cells are probably there, and I had to agree with that.

I did think that something like Steroetactic Radiation would be worthwhile anyway, though there were two conflicting studies as to the efficacy of doing both (a third study is now close to being concluded). We got a second opinion from the Cleveland Clinic, and they thought that Gamma Knife Surgery on the larger tumors would be of benefit. Gamma Knife is a form of Stereotactic Radiation (which is a targeted radiation).

I had already gone back to reading the article about DCA, but there was no source to get it, no one was trying it out yet, and Kathi's condition was fairly acute and had to be dealt with quickly. So, once agin we went down the conventional route.

Her regular Oncologist (not the one that told her she had 2-4 months) said that she thought she had 1 to 2 years. Better, but still devastating.

To sum it up, she got Gamma Knife Surgery, Whole Brain radiation, then two types of chemotherapy. Her cancer was triple negative, so no targeted therapy was available. Once again the cancer responded very well to the treatment to the point that all reports showed 'no indication of metatstasis'. However the CA15-3 tumor markers were going up with each visit.

In the meantime, thanks to this wonderful site, I was able to keep tabs on what was going on, and I had ordered DCA from them before the Feds butted in. Still, I decided to hold off on giving Kathi DCA until after the conventional treatments were over. I'm somewhat conservative by nature...

We started to give Kathi 15mg/kg or 500 mg of DCA (and B1) about three months or so after the last chemo treatment, since the plan as far as the Oncologist was concerned was to wait and see if something started to pop up (since her treatment is considered palliative). The tumor markers kept marching up, but so far, no visible cancer.

Then some cancer started showing up in the lung. The brain was doing ok. The tumors kept growing, albeit slowly.

Then I increased Kathi's dose to 800 mg, and over the next 3 or 4 visits, almost a year I think, the tumors were stable and possibly shrinking. So, there looks to be a rough correlation with the DCA dosage and excellent results.

That takes us to July 4th weekend of this year. Kathi had been getting out of breath a lot, and was coughing a lot, but we had decided to go to New York City anyway, and watch the fireworks. As time went on, Kathi could hardly walk 50 yards without stopping to rest, so we came home a day early and called her GP, who advised us to go to emergency. We were thinking it wasn't that serious, but we went anyway.

As it turns out she had a Pericardial Effusion which is fluid buildup in the pericardial sac which surrounds the heart. The fuild buildup puts pressure on the ehart and it can't beat properly. Symptoms include fatigue, shortage of breath and coughing. It can be caused by among other things, a virus and/or having had metastasized cancer.

They drained the percardial sac and tested the pericardial fluid and pericardium tissue for cancer. Negative. Good news on that score at least.

During this time, we had stopped DCA as it turned out for over two months since it has a tendency to make her tired, and she was pretty much exhausted all the time anyway.

The fatigue still hadn't gone completely, the cough hadn't gone away, and she lost her voice to a large degree.

We had a CT scan of the throat and there were some supicious looking stuff there so we went to an endocrinologist to get a needle biopsy. At first they thought it was *primary* thyroid cancer, which would have been easily treatable, but the results were double checked by Johns Hopkins and it came back as metastasized from the BC.

I think that the cancer came back from when we were on our little DCA 'vacation'.

That's where we are now. Our regular Oncologist hasn't got the news yet (she's on vacation), so I don't know what action we will take. If it had been a primary thyroid tumor, the plan was to remove the thyroid and take Radioactive Iodine for any left over cells. Thyroid cells take up iodine very nicely.

Since it's not a primary tumor, we will talk to the Oncologist about what we should do. I'm hoping that we will do a little bit of wait-and-see because we are now back on DCA on a regular basis, and I'm hoping that the results will get better over time.

Anyway, that is our story so far.

Keep up the good fight, folks..

P.S. The last CT scan of the lungs showed more improvement. The Dr. that treated teh Pericardial Effusion used the word 'remission'.


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chrisz
Member since Jul-13-07
86 posts
Oct-28-09, 10:33 AM (PST)
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1. "RE: Our results so far"
In response to message #0
 
   first off you guys are in our prayers.
further down in the testimonials you will see "My Wifes Story".
that will give you a somewhat update on Rosie, my wife and our DCA experience.


since then the cancer has spread to her liver and lungs.
we hit the Liver with stereotactic radiation and so far that blasted 3 of the 5 tumors.
rosie is on abraxane and avastin. we just did ct's of her lungs and things seem stable.

we can't seem to get the bones stable. every scan shows new bone disease. she had radiation to her neck which we had to stop 2 wks in due to a horrible throat infection that put rosie down for almost a month.

Rosie got real bad neuropathy i think from a combo of taxol and DCA. that is also the best scans we ever got. but we had to stop both taxol and dca due to her feet and hand pain.
it has taken almost a year to finally get her relief from the PN.

we were supposed to go in today for scans of her liver but right now me and 2 of my four girls have strep and rosie is coughing pretty good so we canceled till next week.

i look at what you guys have gone through and it gives me great strength. this site has been a great source of info and and i met oracle here so that in itself has been great source of strength seeing what his wife lien has been going through.

please stay strong and you have big energy coming atcha from the z family in philadelphia..... go phils


chrisz


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Sandramoderator
Member since Feb-27-07
822 posts
Oct-28-09, 10:36 AM (PST)
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2. "RE: Our results so far"
In response to message #1
 
Chris,

Please consider trying our artemisinin protocol. Rosie won't get PN from it.

http://artemisinin.pbworks.com/FrontPage

Vets have used artemisinin effectively against bone cancer in dogs. I know it has reduced bone pain in a few human cases I'm working with.

And, I'm researching Photodynamic Therapy right now. It might be useful to try on those bone mets, as bone (being mineral) conducts light better than soft tissue.

Best wishes,
Sandra


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Sandramoderator
Member since Feb-27-07
822 posts
Oct-28-09, 11:04 AM (PST)
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3. "RE: Our results so far"
In response to message #2
 
They are doing some kind of PDT in Philadelphia. You might want to try to find someone there to speak with, or get Rosie's doctors to do so. This is cutting edge research.

http://clincancerres.aacrjournals.org/content/15/13/4460.abstract


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