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dr. phuli's blog

I Want My Pink Money Back!

Tuesday, August 2nd, 2016

When diagnosed with breast cancer, I figured the bazillion pink dollars me and my friends had raised over the years would provide me with easy access to clear treatment options and emotional support. Boy was I wrong.

First thing I discovered is that once your doctor shares news of your fate (over my cell phone during a high school meet–thoughtful, right?), it can take weeks and weeks to see a doctor or meet with some form of a consoling medical professional.

After several phone calls to an oncologist I’d heard was good, I was told that I was putting “the horse before the cart.”  I needed to have surgery first and then speak to them.  But didn’t I need genetic tests and an MRI? What options were out there?  I’d seen the  long lasting side effects from radiation, heard stories about missed tumors, and knew of the many debilitating side effects from  “hormone therapy,”  which is now pretty much standard of care for most breast cancer survivors with hormone sensitive tumors like me.

It was going to take several weeks to meet a surgeon.  After much complaining I was granted a phone call with my surgeon’s nurse practitioner.  She informed me that I could wait many weeks or months because my tumor was small.  She described my breast mass as a “poopy tumor,”  that would just need “a little radiation and lumpectomy, and then I could get on with my life.”

It appears that women’s breast cancer options are one size fits all.  No one seemed interested in my immune function, mental-emotional state, past illnesses, genetics, or the fact that my aunt died from her “poopy” tumor.  Despite several requests to meet with a caring, informed professional to help me deal and plan, I was never offered an appointment.

We women walk miles and miles, buy pink T shirts, totes, and kitchen appliances, raising a staggering $6 billion annually to improve the treatment of  breast cancer.  The pink money we raised seems to have bought us McMedicine standards of care that rob women of  individualized care and few good options.

We deserve more.  Way more.  Within days of diagnosis all women should be offered emotional support and enpowered with information, if they want it.  We are not all the same.  We should not have the same treatments.  Decisions are not all about mortality indices and cost efficacy.  The medical world is changing at breakneck speed  and there are many new things to consider.

With my my many weeks to wait, I dug for answers and wow am I glad I did.  Had I followed the “standard of care” offered to me, (lumpectomy, radiation, and hormone therapy), I would have missed a second cancer, not been able to reconstruct my breasts at the time of surgery, exposed my organs and immune system to harmful radiation, and worst of all, I would have been placed on a 10 year medical regimen that could adversely affect my longevity, quality of life, relationships, and sense of well being.

I figured out what was best for me and my cancer.  I researched radiation options, like proton and intra-operative, IOR.  I understood there are dozens of important genetic markers beyond BRCA, and a world of immuno-therapies, such as  dendritic vaccine which I did in Mexico with excellent results.

The billions of pink dollars we raise should be looking at more innovative ways to detect and treat breast cancer.  I do not believe that the current standard of care, hormone suppressing therapy is right for all women.   I’m fairly certain that we can be using lower doses of these drugs that would be better tolerated. Research exists showing cannabis inhibits breast cancer cells, while supporting bone growth and treating insomnia, without getting a high feeling. This could be the perfect adjuvant for the millions of women not tolerating hormone suppressing therapy.  If we raise $350,000 I could run a double blind control study for breast cancer survivors right now in Israel using Cannabidiol.  Dendritic vaccine is important and the future, and is available now in Mexico.  Lets offer some trials for women opting to pretreat before surgery.

That surgical nurse was wrong.  My “poopy tumor” was a big deal.  If I had followed my her advice I would not be getting on with my life happily as I now am.

I hope this will be a wake up call to not throw our money into pink research that is poorly regulated, not well accounted for, and the funds that survive the greed largely fund chemotherapy trials.   Lets take our pink money back and develop better options for women.  Its our problem.

Check out http://thinkbeforeyoupink.org/resources/before-you-buy/

0 Comments  |  Permalink  |  Posted in Breast Cancer, Breast Disease

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I’m back….and we have a lot to catch up on

Thursday, July 21st, 2016

Happy to say I’m back to blogging and there’s a world of info to catch up on…

I’ve been through breast cancer and my daughter had osteosarcoma (bone cancer) so the last 2 years have been about that, immunotherapy, dendritic cell vaccine, and much more.  I have been absorbed in this and have a lot to share.  Happily we are both well.  More on how we got well later.

First, how did I and my daughter get cancer, at the same time, and what did we do?

When we last connected I was just getting back to work from my journey through Lyme. Life was great off antibiotics but in April 2014, my last blog date, I visited Florida for a little R & R. Who knew that April was sand flea season there? Who knew that sand fleas carry many Lyme co-infections, including bacteria (particularly Bartonella), viruses, and Rickettsia (germs that are somewhere between a virus and a bacteria)- all carried by ticks, fleas and other creepy crawlies. Sand fleas must have entered me through my bikini top as I awoke with 60 (yes sixty!) sand flea bites to both breasts. Breasts only. My daughter had many bites too, not as many as me but at least a dozen.

I don’t want to freak the internet out by suggesting that flea bites will give you cancer but it is a freakish coincidence that several months after this we both developed cancers. I developed 2 cancers on my right breast, she had cancer in her bone.

I do not believe the bites CAUSED our cancers but I see illness in shades of gray and there is usually a “perfect storm” that happens to take someone down and give them a severe illness like Lyme disease and cancer. Many people are bit by ticks and sand fleas and other nasty insects but never get sick, but there is the small percent that do. I believe that’s because they had a combination of factors, say a recent infection, stress, genetic tendency, previous infections or medications that just helped the invading insect (who carry a multitude of bacteria and viruses) take down the immune system and whamm….Lyme, Fibromyalgia, MS, even cancer can happen. Do I think the sand flea bites contributed to my breast cancer? I don’t know, but in light of what has happened to me and my daughter how can I not wonder?

As many of you may be aware, viruses have long been linked to cancer. Viruses have been shown to cause breast and osteosarcoma in animals, and a 2013 publication from the International Agency for Research on Cancer stated that 18-20% of cancers are caused by viruses, so it is not far fetched to reason that the flea bites, coupled with my genetics and immune issues from Lyme, may have been my “perfect storm,” predisposing me to breast cancer.

At the end of the day it does not matter why we got cancer, we did. What I am really excited to share is how we both got better. It was not easy and we both used immunotherapy to get here.

More on that to come.

5 Comments  |  Permalink  |  Posted in Breast Cancer, Immunotherapy, Lyme Disease

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