Interesting article on CTCA's statistics...

I've heard all this...

And it doesn't matter. What matters to me is that my daughter is a patient there and getting phenomenal care and her cancer is now "stable" after her NCI cancer center oncologist stopped her treatment last August because it was "no longer working" and told me to watch his church's online seminars on death and dying. Everybody is quick to judge based on stuff like this. But this is not the story you will hear from the patients there - and we've gotten to know many of them, and believe me, I ask lots of questions. Yes, it's for profit. Yes, they don't take a lot of obscure insurance plans or Medicaid. I don't know how it works with Medicare, have not asked and have not talked to anybody about it.

They do what they do - cancer - and they do it well. They treat the whole person. My daughter arrived there with a multitude of issues - she had actually been released from the hospital in her city the day before after a massive rectal bleed from the Avastin requiring multiple blood transfusions. The NCI doctors - hers and the on call ones from the cancer center who made rounds in the hospital, the gastroenterologist at the hospital - could not find the source of the bleeding. The "answer" was that she had stage IV colon cancer is this was how it was going to play out.

This was immediately addressed, along with all the other problems. All the care was right there under one roof. And her chemo was resumed right away. And she improved in leaps and bounds - every single issue resolved. She has gained 40 lbs, feels great, looks wonderful, feels like herself again. And a plan is being formulated now to eradicate any remaining tumor in her liver after her next scan.

What I have found telling are the stories I hear from patients there who live there in Tulsa, some who work in health care. They know the reputation of the center and the other hospitals and choose to have their care there. And the volunteers - we spoke with one man who is a retired minister. He said that his daughter and son-in-law are doctors out of one of the big hospitals in Tulsa and that they have nothing but good to say about the place and encouraged him to volunteer there instead of elsewhere because of the reputation. He said that if any of his family needs cancer treatment, they will have it there.

My husband had an emergency during one of our trips there that landed him in the ER at St. Francis Hospital in Tulsa. The problem turned out to be an intestinal blockage caused by adhesions from his kidney surgery 3 years ago for renal cell cancer. The problem worked itself out, thankfully. But the doctor who saw him asked what brought us to Tulsa (we live 400 miles away). We told him the CTCA, where my daughter is a patient. He said wonderful things about the place and reputation without being prompted - and not just a quick compliment, he elaborated on it. And I felt reassured about our decision again.

This is just our experience. All I care about is that my daughter is doing well.

Sandy

 

tanstaafl said:

+ & -

CTCA's mercenary and gamesmanship aspects can be less than endearing.

However, for someone starting from scratch, or way behind, with very good insurance or finances, and determination, CTCA may have extra chances beyond "standard" hometown.  I knew a girl from college who was at death's doorstep, written off with several months only, told "sorry nothing more" with a highly metastasized breast cancer recur.   She wrung 3 more years out  of CTCA.  She posted her biomarkers and diary, so I really think CTCA did somehing for her. Her insurance must have been substantial but otherwise ordinary finances, perhaps parents helped. 

Technically, the multiple chemo series were more exhaustive than inspiring but persistence paid both CTCA and her.  Her naturopathic supplements were about half as many components as LEF, at 1/2 to 1/3  dose.  So of course I feel we can do better for ourselves.  

However, for someone in trrouble, not knowing enough,  short on time, long on finance, CTCA has a place in the market.

Not knowing enough?

tanstaafl, Please tell me, what did we not know that we should have known? And what are the LEF recommendations for supplements for mCRC? I would not call us "long on finance." We are "ordinary." There is some cost (room $40/day, meals). They reimburse mileage.

Sandy

This doesn't surprise me at all...

unfortunately.  It's critical to look carefully at statistics wherever they appear...in research studies, hospital data, etc.  The methodology involved can contribute to results that can be very misleading, especially when the goal is to get a drug approved, get more customers, or what have you. Doesn't mean you can't go to CTCA and get a great outcome, but clearly (based on the gentleman in the article, and the number of people I've seen online who went to CTCA and still didn't survive), it's not a magic bullet that they offer.  AA

Edited to add that this shouldn't appear as a response in any way to Sandy's experience!  Just a comment on the article, and its reflection of the saying "Lies, damned lies and statistics".

Varmint5 said:

Not knowing enough?

tanstaafl, Please tell me, what did we not know that we should have known? And what are the LEF recommendations for supplements for mCRC? I would not call us "long on finance." We are "ordinary." There is some cost (room $40/day, meals). They reimburse mileage.

Sandy

going beyond
Sandy, more on cimetidine at the earliest moment affects probably 70+% of stage IV patients. It appears to overlap avastin a lot and erbitux some. Three years ago I couldn't find a doctor that knew anything about it. Simple tissue stains (CA19-9 + CSLEX1) can tell precisely, but you can't find an ordinary US pathologist for that either. These are described in the LEF.org articles, what I consider a very good, single stop source of information on supplements for cancer other than vitamin C. I usually buy elsewhere but LEF hits the jackpot on a few things.

Ditto COX2 inhibitors, especially celecoxib, and COX2 stains. All this and more are available from the Life Extension site.
http://www.lef.org/protocols/cancer/colorectal_03.htm
http://www.lef.org/magazine/mag2009/dec2009_Preventing-Surgery-Induced-Cancer-Metastasis_01.htm
Above are good starting links.
Beyond this, there is more on on coQ10, vitamins B6 and K2 (specifically menaquinone-4) in LEF. Beyond LEF, is the IV vitamin C option.

I have pulled heavily from Japanese research, starting from LEF's articles, to implement a kinder but more long lasting chemo for my wife.

I would appreciate it, and think many would too, if you could list CTCA's current supplement recommendations for mCRC. Many compare and consider several sources of information before they commit themselves on supplements.