Friday, June 12, 2015

"Alternative" treatment for melanoma

I started this blog in 2010 (or rather, Rosie did!!) as a way to communicate my personal story to family and friends.  Around the end of 2011, it began to change.  As I was contacted by melanoma patients and their families, I began researching better answers to their questions. Suddenly I realized, if there was one who found me seeking information...there must be many more who also needed to know.  This blog has become my message board to all those families.  Those who read this strange conglomeration will still find my general random craziness, a glimpse into my passions (reading, cooking, sewing, family, running, music), the best research I can find regarding melanoma, and...extreme honesty!  While I put out the latest and greatest about every single development in melanoma, I work hard to include context about what is actually known, what we can hope the treatment will provide, and when I can find the it all turns out. I admit complete hatred of insurance companies...every single one of them!!!  There is so much that needs to be repaired in the way medicine, Big Pharma, clinical trials and the FDA work that I could dedicate every post to those topics alone.  I have absolutely no tolerance for medical providers who treat patients badly, quacks who are no more than elaborate con artists taking advantage of fear and desperation, or legitimate researchers who continue to use FDA approved medications instead of  better, more effective ones.  So, lets start there!

Folks can be very protective of the medicine "they" took.  They seem to take it as a personal insult when treatments they utilized turn out to be lacking.  Interferon is a classic example.  It has little to no effect on melanoma, has been clearly proven to have absolutely NO positive influence on survival, yet docs still use it both as treatment and as a comparative arm in trials, and some of those who took it go into attack mode when it is criticized.  When the good news about ipi was just coming out in 2011, I noted this:  Is interferon still an appropriate treatment?  Though dacarbazine offers at least a bit more help for those who are running out of better options, many of the same criticisms can be applied to its use.  Ribas and Robert had this discussion in 2013:  No more dacarbazine!  I took peptide vaccines as part of my nivo trial.  Since then we have learned - Peptide vaccines do NOT trigger an effective immune response!  Thankfully, they are no longer used in my trial!  (Although one of my fellow ratties bemoaned the fact that patients in the trial currently don't "go through what I went through" as though it was unfair!  OMG!!!  Learning from mistakes made on fellow ratties is the ONLY thing that IS fair in a clinical trial!!!!)  ADC's (antibody drug conjugates) sound great, but so far leak too much nasty chemo into the patient's body (rather than just in the tumor). Hopefully, they will get better.  The Cure Tech anti-PD1 product was a dismal failure and despite the suffering of the ratties (Love you, J!!!) who participated in that trial, it was ended and hopefully will never be heard from again.

All this to say, that melanoma patients can only do the best we can.  We can research things to the best of our ability, find the best care we can afford to get to, and choose!  Sometimes it feels no better than throwing a dart at a board....with your eyes closed!  Educated guesses and desperate decisions.  I am certain I owe my existence to the clinical trial I was lucky enough to be in.  However, there were many ways in the course of that experience in which I was used and treated unfairly.  I think many people fear speaking out....lest they not be allowed to continue or be punished in some other way.  Not me:  Patient rights in a clinical trial. An oxymoron???  I also have no timidity whatsoever when it comes to medical providers who do not serve their patients as they should:  The Jerk!  I did end up getting an apology, as my letter was forwarded to the Jerk in question, perhaps he learned something...we can only hope.  I have even less tolerance for folks who pose as reputable medical providers, when in reality they are nothing more than con artists taking money from desperate, suffering, and frightened patients.  Even when their "treatments" do no harm (though many actually do) they all waste time and treasure as the patient adopts ineffective care, often until it is too late.  My heart will never forget Mike Brockey and the time he lost on Gerson.  Even when you are minding your own business, the Snake Oil Salesmen will even try to attack via blogs!!!  Fredda Branyon, posing as a doctor offering stem cell therapy, was already CONVICTED and facing jail time when she (or her minions) began commenting on every blog they could find with the word 'cancer' in the title:  Dr. Fredda Branyon is a CRIMINAL!  Yes, the conversations I had with many other bloggers were very interesting!

With some regularity, folks contact me here, or post on forums, asking what diet or 'alternative' treatment they could use to 'fight' their melanoma.  While I believe in a healthy diet and exercise, sadly, so far, no particular diet or food has been found to prevent or cure melanoma.  But, I cover them all:  Sugar free, Ketogenic, Gerson, Cellect  There's Strawberry Juice, Eggplant, potatoes, and tomatoes, Red wine, Coffee, doxycycline, curcumin, cimetidine, NSAID's and shitakes, Vitamin D, Snake venom, beta blockers and Vietnamese sophora root, exercise, Curry again!!!  and today there are these:

Anticancer effects of Sandalwood.  Santha and Dwivedi.  Anticancer Research, June 2015.
Effective management of tumorigenesis requires development of better anticancer agents with greater efficacy and fewer side effects.  Natural products are important sources for the development of chemotherapeutic agents and almost 60% of anticancer drugs are of natural origin.  Alpha-Santlol, isolated from Sandalwood, is known for a variety of therapeutic properties.  Our laboratory identified its anticancer effects in chemically-induced carcinogenesis in [special] mice and in vitro models of melanoma, non-melanoma, breast and prostate cancer.

Good to know.  However, that's a long way from peeps.  Not sure what "non-melanoma" is!  And, while I will be the first to laud the lowly periwinkle (the source of one of the best and most effective chemotherapy drugs, Vincristine) and work to protect the rain forest, nature also provides us with poison ivy, oleander, and hemlock!

Coffee drinking and cutaneous melanoma risk in the NIH-AARP diet and health study.  Loftfield, Freedman, Graubard, et al.  J Natl Cancer Inst.  Jan 2015.
Cutaneous melanoma is the fifth most common cancer in the US.  Modifiable risk factors, with the exception of exposure to ultraviolet radiation, are poorly understood.  Coffee contains numerous bioactive compounds and may be associated inversely with melanoma.  Coffee intake was assessed at baseline with a food frequency questionnaire in the NIH-AARP prospective cohort study.  Among 447,356 non-Hispanic whites who were cancer-free at baseline, 2,904 cases of malignant melanoma were id'd during a median 10.5 year follow-up.  After statistical analysis, the highest category of coffee intake (more than or equal to 4 cups a day) was inversely associated with malignant melanoma, but only if was caffeinated.

Though the authors admit they are not sure if the effect was from the coffee or the caffeine, guess I'll have another cup!!!

No matter how strange the findings, when it comes to melanoma, I will certainly put it all out there!!!  You never know!  But, if it walks like a duck, quacks like a duck, smells like a duck, seems just a little too easy, too crazy, or too good to be probably is!!!!  Don't let desperation trick you into doing something that could prevent you from getting the best REAL help you can.  This oped/report on cancer therapy by QuackWatch 
provides good analysis of particular treatment scams as well as basic information about how treatments and programs are analyzed to determine their real value and how quacks twist the 'data' and prey on the fears of frightened folks.  This paragraph really hit home:
    "Quacks typically charge that the medical profession, drug companies, the food industry, government agencies, and/or other "vested interests" are conspiring against "natural" cancer cures. No such conspiracy has ever been exposed. Yet many patients—especially those whom standard medicine cannot cure—embrace the notion that a small but dedicated band of rebels is defying the medical establishment by making natural cures available. And desperate patients may find it more comfortable to believe that cures are being suppressed than to feel that their situation is hopeless."

Don't let jerks take advantage of you.  Melanoma is fight enough. There are more viable treatments (as lame as they are!!!) for melanoma than ever before.  It is not easy, but don't let fear and denial rule your decisions.  I hope this helps.  I wish you well. - c 

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