I just finished Kathy Rich's Red Devil book. It's got some tips for stage IV patients. I hope it will be reissued at least in electronic form. In the meanwhile, I'ill pass it on with 4 unaddressed stamped envelopes.
Some notes that I suspect might have made a difference in Ms Rich's incredibly inspirational story of survival (20 years with stage IV breast cancer):
1. she exercised 45 minutes/day for 5 days/week on stair master. Some of her oncologists advised her against it due to her extensive bone mets and risk of bone fracture. She ignored them all for the endophin exercise gave her. At one point, she went from paralysis to stairmaster in 2 weeks. Robobabe, yeah.
2. she is allergic to certain medications and brackish pond water. Her immune system might have helped her more than we know.
3. she's an international traveller on her job. Probably took chloroquinone to prevent malaria. there's 2 clinical trials that are testing chloroquine:
http://clinicaltrials.gov/ct2/results?flds=Xf&flds=a&flds=b&flds=c&term=chloroquine+breast+cancer&show_flds=Y
If anyone wants to try this, please join the clinical trial. One of them has a low dose vs standard dose. chloroquine has very good safety profile.
4. At one time, she had rapidly rising tumor markers, collapsed vertebrae, was put on cytadren an anti-hormone therapy that is no longer used somehow, an unspecified infection. Then miraculously she recovered and tumor markers dropped precipitously. Either cytadren or the infection or both or neither contributed to the miracle. and cytadren continued to work for 2+ years.
5. Ms Rich seems to think stress has a lot to do with her cancer. I'll let you read the book and decide.
6. Ms Rich survived a stem cell transplant at Duke (standard treatment during that time, chronologically it was hazy, she must have had it around late 1990s, about 5 years after her stage IV diagnosis), and was NED for 3 years afterwards. Recurrence was in adrenals (before her mets were bone only). The book ends at this point, Ms Rich subsequently went to India around 2001, lived for a year and wrote another book. I haven't read that book yet and don't know whether it dealt with more cancer experience.
7. Ms Rich is not oligometastatic by many definitions. She started out with 8 distant bone mets with some large. But according to her onco, her cancer responded to every treatment they throw on it. Including chemo, megace, cytadren, possibly tamoxifen too. She seems to have dropped tamoxifen due to its psychiatric side effect.
Unfortunately, Ms Rich was not here to see the new paper which categorized breast cancers into 10 subcategories. It's possible that she had the newly discovered subcategory with errors in immune genes and surprisingly good prognosis. We will never know. But maybe, somewhere in Sloan Kettering, some scientists have permission to access Ms Rich's tumor sample, and derive some understanding of this phenomenon and one day there will be a cure.
http://scienceblog.cancerresearchuk.org/2012/04/18/increasing-the-resolution-on-breast-cancer-the-metabric-study/
Then Kathy will rest in peace. Thanks
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