XELODA (oral chemo) vs. FULFOX -- you DO have options for treatment!!!

I met yesterday with oncologist Dr. Y (1) to get a second opinion about my cancer treatment and (2) to determine if he would support me on my self-healing journey by allowing me to refuse the chemo and surgery while providing ongoing CEA marker blood tests and MRIs to keep an eye on the cancer.

The new doctor still talked the chemo and surgery talk, but he also agreed that if the tumor has disappeared, there is no reason for surgery. He also agreed we can monitor the tumor with an MRI, as opposed to the radiation-based CT-Scan. Since I had two CT scans in January, I don't want another one anytime soon. Plus, differences between normal and abnormal tissue is often clearer on an MRI image than with a CT scan, especially in the liver.

(The Mayo Clinic suggests that the radiation doses of a CT scan are low enough that "your risk of developing cancer from it is so small that it can't be reliably measured."  However, "because of the possibility of an increased risk, the American College of Radiology advises that no imaging exam be done unless there is a clear medical benefit". Seems a rather contradictory statement! Click here to read The Mayo Clinic's full report.)

Dr. Y also discussed chemo options with me, and this is when I learned that Dr. G had not been honest with me about my chemo choices. That Dr. G withheld the truth from me is really upsetting, because, over the past five years, I had honestly come to believe, because of his extraordinary bedside manner, that Dr. G cared about me as a human being, not as someone from whom he could profit on the sale of expensive chemo drugs.

Did you know that, unlike other doctors, oncologists make most of their income by buying drugs wholesale and selling them to patients at marked up prices? Ethicists see a real problem with this paradigm. Here is NBC's Rehema Ellis reporting on this disturbing practice:

Visit NBCNews.com for breaking news, world news, and news about the economy

During my first bout with chemo in 2011, and after a series of events including a botched surgery by my colorectal surgeon to implant a port, I ended up consulting with Dr. G after a colleague's referral. Dr. G gave me several options for treatment, instead of bullying me into FULFOX like my colorectal surgeon had. One of those options was the oral chemotherapy regimen, Xeloda. Dr. G explained I could get exactly the same benefits from Xeloda as from FULFOX. I was very excited! I gratefully opted for Xeloda and did well on it.

When Dr. G and I met in January 2017 to discuss treatment options for the colon cancer that had metastasized to my liver, I asked about Xeloda. He was firm in his resolve that Xeloda would "not work" in matters of metastatic cancer and that my "only option" was the port and FULFOX. I was devastated. Numb from the diagnosis that included a less-than-year-end death sentence, and overwhelmed by my lack of options, I reluctantly agreed to Dr. G's FULFOX regimen.

Back to Dr. Y and our meeting yesterday. Dr. Y began with FULFOX, then moved to Xeloda.

I said, "Dr. G told me Xeloda was not an option this time?"

"Why?" asked Dr. Y. "Xeloda has the same effect as FULFOX".

I did not believe my ears. "Even with tumors metastasized to my liver?" I asked, dumbfounded.

Dr. Y is a cheerful man. He laughed a little. "Yes!" he exclaimed. "It works exactly the same."

I came home and did some research and this is the truth I discovered.

On October 2, 2006, Roche Pharma, the world's largest biotech company making a gazillion dollars a year, prepared a report to its investors entitled "Avastin and Zeloda set new standards for the treatment of first line metastatic colorectal cancer". The report related results from an international, phase III study, presented to members of the European Society for Medical Oncology. The study showed that:

• The chemotherapy combination XELOX (oral Xeloda plus oxaliplatin) is as effective in terms of progression-free survival, and more convenient than the current standard treatment FOLFOX- 4 (infused 5-FU/leucovorin plus oxaliplatin) in the treatment of advanced (metastatic) colorectal cancer.
• The addition of the anti-angiogenic agent Avastin to chemotherapy (FOLFOX-4 and XELOX) significantly improves progression- free survival (PFS) compared to chemotherapy alone.
  This means that adding Avastin to either chemotherapy combination improves the chances of delaying progression of the disease by 20 percent.

The Annals of Oncology, a publication I am certain Dr. G receives, published a report on October 19, 2008, entitled, "Capecitabine Plus Oxaliplatin (XELOX) Versus 5-Fluorouracil/Folinic Acid Plus Oxaliplatin (FOLFOX-4) as Second-Line Therapy in Metastatic Colorectal Cancer: A Randomized Phase III Noninferiority Study". I tried to read this article; it's very difficult to understand given the intended audience is oncologists. However, the report's conclusion is 100% discernible: XELOX is noninferior to FOLFOX-4 when administered as second-line treatment in patients with metastatic colorectal cancer. 

Why, why, did Dr. G lie to me??? Perhaps $$$$$$$ is the reason?

Published on 9 July 2011, BMC Cancer (an open access, peer-reviewed journal that considers articles on all aspects of cancer research, including the pathophysiology, prevention, diagnosis and treatment of cancers) published a research article entitled, "Cost-analysis of XELOX and FOLFOX4 for treatment of colorectal cancer to assist decision-making on reimbursement. The conclusion of the cost-analysis: XELOX costs less than FOLFOX4 for this patient group with MCRC from both the healthcare provider and societal perspectives.  

This conclusion was based on these results:

• XELOX patients received an average of 7.3 chemotherapy cycles (of the 8 planned cycles) and FOLFOX4 patients received 9.2 cycles (of the 12 planned cycles).
• The scheduled cost per patient per cycle was $2,046 for XELOX and $2,152 for FOLFOX4, while the unscheduled cost was $240 and $421, respectively.
• Total treatment cost per patient was $16,609 for XELOX and $23,672 for FOLFOX4; the total cost for FOLFOX4 was 37% greater than that of XELOX. The addition of the societal costs increased the total treatment cost per patient to $17,836 for XELOX and $27,455 for FOLFOX4.
• Sensitivity analyses showed XELOX was still less costly than FOLFOX4 when using full drug regimen costs, incorporating data from a US model with costs and adverse event data from their clinical trial and with the removal of oxaliplatin from both treatment arms.
• Capecitabine would have to cost around four times its present price in Hong Kong for the total resource cost of treatment with XELOX to equal that of FOLFOX4.

In summary, XELOX and FULFOX are equally efficient in the treatment of first-line metastatic colon cancer (my diagnosis); however, it is more expensive to treat a patient with FULFOX than it is to treat with XELOX.

Fuuuuuuuuuuck! I feel used! Have I been a meal ticket! I am soooooooo pissed!

I shared my findings with my friend, Jane. She said, "Where do you think they get the money for those beautiful cancer centers?" Oh, my gosh!! She's right!! It's absolutely true!

The cancer centers in Green Bay and Appleton, Wisconsin, are a home away from home, staffed with cheerful, caring workers (who probably honestly believe they are doing the right thing), and replete with calming, welcoming aesthetics. My new cancer center is more of a campus, with wide, open spaces inside and out; a cafe; and an on-site hotel. All your cancer needs are anticipated and met. All you have to do is show up, not ask questions, and drink the Kool-Aid!

Except for patients like me! As a Radical Remission patient, I have taken control of my own treatment. I question the modalities prescribed, do the research, and decide for myself how I will proceed with this Cancer Dance. I am Grateful for this control -- it empowers me! I will not allow my Cancer Dance -- my life!!! -- to be clubbed into dank submission by oncologists motivated more by monetary kickbacks than the quality and saving of my life!

I am Grateful for Radical Remission.

I am Grateful for the new oncology clinic and Dr. Y's opinion,

I am Grateful I am off the FULFOX.

I am Grateful I have treatment options.

I am Grateful I am moving towards full recovery. 

I am Grateful for this poem of perseverance, by American Poet Charles Bukowski:

the laughing heart

your life is your life
don’t let it be clubbed into dank submission.
be on the watch.
there are ways out.
there is light somewhere.
it may not be much light but
it beats the darkness.
be on the watch.
the gods will offer you chances.
know them.
take them.
you can’t beat death but
you can beat death in life, sometimes.
and the more often you learn to do it,
the more light there will be.
your life is your life.
know it while you have it.
you are marvelous
the gods wait to delight
in you.