Supplements

"Let food be thy medicine and medicine be they food" - Hippocrates

This post is not recommending any specific supplements for DCIS, this post is documenting what I did to arrive at the decision on what supplements I should take.  It is a journey that has taken me the past 17 months and it is a work in progress.  There is not any one supplement that will kill cancer cells, you need to look at your own body and see what is lacking.  Also, remember the word supplement means to supplement an already healthy diet, supplements are not a replacement of a healthy diet in any way.  Once my tests come back at good levels I plan to go off all the supplements and eat food items that will offer the right nutrients in which I was previously deficient, I feel the supplements are good for right now and probably the quickest route to getting to acceptable levels.

Right after I was diagnosed with DCIS my friend who went to the Annie Appleseed Conference with me told me about testing done by a company called Spectracell.  They have a nutritional test that reviews vitamins and minerals in your body to determine what you are lacking.  Their website also has doctors in your area that will write a prescription for the test.  I had that test done shortly after my diagnosis.  Based on that test I added Methoylcobalamin (B12) - 5000 mcg which I was very deficient in due to being a vegetarian for 32 years.  B12 helps to form and regenerate red blood cells, so it is vitally important to your body.  There have been studies showing women with breast cancer have low B12.  If you are a vegetarian reading this blog, please add B12 to your supplement list.  The other supplement I was found to be marginally deficient in was chromium.  Chrominium enhances the action of insulin, which is important for the metabolism and storage of carbohydrates, fat and protein within the body.  I supplemented with Chrominium daily for 1 year, my level is now good and I have since added a good multivitamin to take care of this and other minerals that can easily be lacking.  The multivitamin I take is Ortho Molecular Products Alpha Base without Iron.

Next my neighbor who is a clinical nutritionist suggested I do a hair test by Trace Elements.  The test is called the Multi Element Assay of Hair.  This test showed that my calcium was way too high, off the charts in fact.  No surprise since I had been taking a calcium/magnesium drink for years.  The problem was that I was not taking enough magnesium and I found out that magnesium is the mineral you really want to help your body excrete excess calcium.  The supplement I was taking did not have enough magnesium and I had a major calcium build up.  So I dropped the calcium and started taking Magnesium Citrate 400 mg twice a day.  My calcium level is coming down.  The hair test also found that I had very high copper.  Did the copper come from growing up in a house with copper pipes?Possibly.  To help my body excrete the copper I had to supplement with Molybdenum, I take 500 mcg daily.  I also added Zinc 50 mg per day since it also helps your body excrete copper.  My copper is also coming down.

The next test I did was the Essential Estrogens test by Geneva Laboratories.   This test shows estrogen balance in women both post and pre menopausal.  When I first took this test my 3 estrogens were out of whack.  My Estradiol was so high it was off the chart.  My Estrone was borderline low, my Estriol was very low.  According to the test these values left me in a category with a high risk of breast cancer.  I know the jury is out on whether or not hormones cause breast cancer, but my feeling is that it is better to have these in balance despite the breast cancer controversy.  My neighbor the clinical nutritionist suggested I take Metagenic's Estrofactors twice a day and Trace Nutrient's Ultra Par twice a day.  When I took the Essential Estrogens test again 8 months later my Estrone was at a good level, my Estriol was still a bit low and my Estrodial was still a bit high, but the test indicated I was out of the woods on the breast cancer risk scale.

I found a fantastic Integrative MD and she ordered an Iodine Front Loading test and found I was deficient in iodine, so she added Iodoral 25 mg twice a day.

The Integrative MD also had my vitamin D level tested and it was 28.  This should be at 80 to 100, so she added Vitamin D 5000 IU daily.  My vitamin D level was this low and I live in Florida, so no matter where you live have this tested.  Many studies have shown low vitamin D has been linked to an increased cancer risk.

I had added on my own Curcumin 1000 mg with 5 mg of bioperine (black pepper to add absorption). I found curcumin had anti cancer properties.

My clinical nutritionist added Vitamin E 400 IU daily since vitamin E has been used to reduce cancer risk.

I had a consultation with a natural oncologist and he suggested I add Grape Seed Extract 400 mg per day, Beta Glucan 1000 mg per day and Acemannan which is an Aloe Vera extract.  All three of these have immune boosting properties and boosting your immune system helps prevent cancer.

My Integrative MD then added Xymogen Oncoplex ES which contains Glucoraphanin (broccoli extract) 100 mg, which in trials has shown to reduce cancer growth.  She also added Silymarin Forte (milk thistle) which in trials has been shown to improve liver function which can help detox the body. She added Xymogen Drainage, which is a liver detox also.

My Integrative MD also tested me for omega 3 levels which were low after being a vegetarian for 32 years.  She added Ortho Molecular's Orthomega which contains 950mg of total Omega 3s.

So the final list is below

Metagenics Estrofactors - 2 per day
Maximized Curcuminoids 1000 mg with 5m bioperine (black pepper)
Magnesium Citrate 400 mg 2 times a day
Trace Nutrients Ultra-Par
Vitamin E 400 IU 1 per day
Molybdenum 500 mcg 1 per day
Grape Seed Extract 400 mg 1 per day
Ortho Molecular Products Alpha Base without Iron
Beta Glucan 1, 3D 1000 mg
Ace Aloe - Aloe Vera leaf
Zinc 50 mg
Vitamin D 5000 IU
Xymogen Oncoplex ES - Glucoraphanin 100 mg
Methoylcobalamin (B12) - 5000 mcg
Xymogen Drainage - for detoxification
Silymarin Forte - Milk Thistle 200 mcg
Iodoral 12.5 mg - 2 in the am 2 in the pm
Ortho Molecular Products Orthomega - 950 mg of total Omega 3s.

The list is not the important part of this post, it is the process of getting to the list that is important.  I have no intention of taking this amount of supplements forever, I plan to make changes to my diet which will help rectify the deficiencies once I am at good levels.  The only ones that I feel should be permanent are the Ortho Molecular Products Alpha Base without Iron or any great multivitamin and the B12 since I don't plan to add red meat back to my diet.

I hope this post helps you to find what you need for your body.

Below is how I keep track of the supplements, once a week I fill a morning and evening pill organizer. It saves me a lot of time and I don't forget anything!

Traditional Chinese Medicine

"Medicine can only cure curable diseases, and then not always" - Chinese Proverb

I have had the great privilege of living in Asia twice during my career as a software engineer.  I spent 5 months in Japan, living part of the time in Tokyo and part of the time in Osaka working for the Grain exchanges in those cities.  I spent 13 months in Hong Kong working on a project for the Stock Exchange of Hong Kong.  It was such a wonderful opportunity to take in a culture much different than mine and to see how life is lived in both these countries.  I simply loved it and remain friends with people I met during those projects.

While in Hong Kong I noticed there were Chinese herbal stores on nearly every corner, like CVS or Walgreens are here in Florida.  There were also big Western hospitals since at the time Hong Kong was still British.  I asked my co-workers who were natives to Hong Kong when you would go to a Chinese herbalist versus a big Western Hospital.  They told me if you get hit by a car you go to the Western Hospital for everything else you go to the Chinese Herbalist.  This conversation that took place many years ago pointed me in my second direction after some very unpleasant meetings with Western doctors.  I searched out doctors of Chinese medicine locally.  I found one at my local health food store advertised on the wall.  OK, probably not the best place to find one, but for some reason this advertisement appealed to me, but then that is what they are suppose to do.  I saw this practitioner for about 8 weeks, I did weekly acupuncture and took Chinese herbs in a tablet form 3 times a day.  After the 8 weeks, I went for a mammogram and they saw marginal improvement.  That was not good enough for me so I sought out another doctor of Chinese medicine.

Ann Fonfa, who heads the Annie Appleseed foundation, gave me contact information for Dr. George Wong in New York.  Since I grew up in New York I decided to make the trip to meet with Dr. Wong. This was in December of 2013.  As I said in a previous post, I met Dr. Wong on a street corner in Astoria, Queens.  We then went to a cafe nearby.  Dr. Wong spent nearly 2 hours with me, read my pulses (yes we have more than one) and reviewed all of my mammograms, blood work and pathology reports. He told me my adrenal gland was dead, which I knew since I was born with a genetic disease where my adrenal gland does not function properly.  He told me I had too much stress in my life, well I had just been diagnosed with cancer so that made sense. Also, my job had been really bad for the past 2 years, so I am sure that caused a lot of stress.  He told me I did not have cancer but I was in grave danger of developing it. He asked me why I had come from Florida to see him and I said that my gut feeling on the Western treatments being offered to me was not favorable and I wanted to try Chinese herbal medicine to reverse this DCIS.  He said he could help me but could not promise that this would not turn invasive. I started the Chinese herbs when the first batch arrived about 1 week later.

At first the taste was unbelievably bad.  The herbs arrive pre-brewed in a small pouch.  You take them 3 times a day after every meal.  At this point I do not feel the taste is bad at all, I guess you can get used to anything.  I treat them like a shot of tequila and just knock them back.  The herbs are to both build my immune system and balance my hormones.  I feel great since I started taking them and while my DCIS is not completely gone, the MRI report from January 2014 compared with the one from January 2015 showed no significant change.  Since the last MRI Dr. Wong has strengthened the herbal formula, I will have another MRI in the next 2-3 months and hope for improvement at that time.  I really like Dr. Wong, I think he is fantastic.  He has done so much for me for so little money.  I have also met several women who have had complete remission while taking his herbs.  In addition to the herbs I go to a local practitioner for acupuncture mainly to reduce stress.

In addition to the Chinese herbs, I am taking a large amount of supplements which I will document in my next post.

Friends

"A real friend is one who walks in when the rest of the world walks out"  Walter Winchell

I have to say that most of my friends walked in.  But as the quote above says when the chips are down you really see who your true friends are, who are the ones that will stick by you even when they think you are crazy and who are the ones that will disappear or really go against you.

When I first had my DCIS diagnosis I hardly told anyone but my immediate family, partly I think due to shock, partly due to denial and partly due to uncertainty of the path I planned to choose. However, the ostrich approach of burying your head in the sand and hoping it will all go away does not work.

I will start with the weird things that occurred.  One friend disappeared, ok not literally, but while this was not a friend I saw all the time, it was someone I saw fairly regularly.  Once they learned of my diagnosis I did not hear from them for a very long time.  Was it they did not agree with my unconventional approach and did not want to confront me?  Possibly.  Was it that they did not want to lose a friend to cancer and decided to distance themselves upfront?  Was it they were afraid to face their own mortality?  The last point I can elaborate on.  When my father passed away suddenly from heart failure at 60 my mother was left alone after 37 years of marriage.  I was not living nearby at the time and thought she would be OK due to the large circle of friends my parents had.  Friends they travelled with, friends they golfed with, friends they went out regularly with.  Well my thinking was not correct.  Many of the friends my mother had dropped her, especially those that were couples.  I cannot figure out what caused this to this day, but my mother had to rebuild her life in a lot of ways at a real time of need.  This is not unique to my mother, a good friend of mine lost his partner of 14 years to heart failure and he experienced the same treatment.  The good news is the real friends stick around, the rest were not truly friends.

The next strange thing was in telling a female co-worker about my diagnosis she said to me "This is a real wake up call for me", meaning the wake up call was for her.  How do you tell someone about your cancer diagnosis and have it be all about them?  Our company had gone though 4 rounds of layoffs in 3 years, they had off shored a lot of these jobs and we had to train the incoming offshore who had replaced our former co-workers, things were stressful at our job for sure and I am certain that stress played a role in my diagnosis, but for my co-worker to only think of herself and state that to me was something else.  She has left the company since and needless to say we have not kept in touch.

The last strange thing was I at my book club meeting when I decided I would share my diagnosis with the club.  I had been a member for many years and knew most of the women there very well.  I also shared that I was going to try alternative methods rather than go for surgery right away.  One of the members made an outright attack on my by saying, of course you are going alternative what else would we expect from you, in a very caustic manner.  The second thing she said is well, guess it did not matter that you always worked out and ate all that organic food.  Nice, I knew someone was going to point that out, but did not expect from someone I thought was a friend.

Now onto the positive things that happened.  One friend of mine, who works full time, has two children and leads a pretty hectic lifestyle took to the Internet on my behalf and researched.  She not only pointed me in the right direction, she affirmed for me that my choice of alternative treatments was right.  She also took 3 days from her busy life and joined me at a conference for alternative and complementary cancer treatments.  She was great at listening to information, pushing me to talk to the presenters at the conference and helping me sort though all the information that we received. She was one of the friends that came running in.

My oldest and dearest friend came to New York with me to meet Dr. Wong on a street corner in Queens so I could have my assessment with him.  Most people I am sure think it is crazy to meet a doctor on a corner in Queens and while my friend did comment to me that only you would meet a doctor on a street corner, she has supported my choice and was very impressed with Dr. Wong after our meeting. This friend also works full time and has two children and has a hectic life, but she took a day off work and made the trip with me.  That type of moral support was exactly what I needed.

Other friends also did research and gave me positive feedback on my choice.  People called, texted, e-mailed and stopped by to see how I was doing.  They talked to me about what I was doing and why which helped me sort through my path.  They asked me how I was feeling, what I  needed, helped with my children if I had appointments outside of school hours.

I was very lucky as most of the friends in my life ran in while just a few ran out.  My family have been my rock though this.  My mother has never doubted that I am on the right path and neither has my husband.  I think having either your family or closest friends go against your alternative choices would really put doubt and fear into your decision making.

Another high point for me has been the Internet, not only all the information that is out there on the subject of DCIS, but the support groups you can find.  The best one for alternative DCIS treatment has been on Facebook.  There are currently over 500 women in this group, each one diagnosed with DCIS and each one fighting their battle in the best way they see fit.  I feel like we are soldiers in a battle against an enemy within.  An enemy who does not play fair or heed to the Geneva convention, an enemy that we will never know we have beaten until we die of some other cause.  An enemy who could ambush you at anytime throughout your life.  An enemy who can be brutal and ruthless no matter what treatments you use against it.  Despite never meeting any of these women I feel a great bond with everyone of them.  For all of us a part of our body which is used to nurture young life has turned against us.  Having these women in my life makes me feel stronger against this enemy.

Guilt

Guilt: the gift that keeps on giving: Erma Bombeck

Having survived 12 years of Catholic schools where mostly nuns were the teachers, I know a lot about guilt.  And second to fear, guilt was the next emotion that I had to grapple with. I know my Jewish friends feel they corner the market on guilt, but let me tell you, the Catholics are pretty darn good at guilt as well. To this day, I still feel guilty about the pack of life savers I stole from the shop across the street from our elementary school on a dare from a friend who I can now say was truly the bad influence my mother said she was. My life as a thief ended that day but the guilt may never end.

So given my background as a Catholic filled with guilt, I looked to myself as the sole cause of this cancer within my body. I was not going to take the easy route and blame some environmental toxin, it was me who caused this.  The only good thing about this line of thinking is that if it was me who caused this, then it is only me who can remove it.

What had I done to cause this cancer in my body? I was Miss Organic Food, I was a vegetarian for 32 years, I was a runner and very fit for a 49 year old.  So thanks to that Catholic guilt I had every bad thing I had ever done in my life right at the top of my memory.  I doubt this is a very good way to live, so that is one thing I have worked on quite a lot in the past 17 months.  Stop bringing up things from the past, they are not important now and probably never were.

Did it matter that I smoked as a teenager?  Did it matter that I drank too much on numerous occasions throughout my adult life?  Did it matter that I sometimes did not eat as well as I should?  I will never know the answers to these questions, but it probably does matter if I harbor guilt about these things.  Letting go of guilt has been a very difficult process for me, one in which I have not entirely succeeded, so it is a work in progress.  Please share any strategies you have used.

Fear

“Only Thing We Have to Fear Is Fear Itself”: FDR

This famous quote resonated with me in the days after my diagnosis of DCIS. I had nothing to fear, yet I was full of fear. At times I was paralyzed with fear, I could not think straight, I could not function normally.  Was it fear of the unknown?  I was not and have never been particularly afraid to die.  It is inevitable, we will all die one day, but I thought of death as some distant happening, not something to be faced with at 49.  While this fear was of course greatly exaggerated since I was not in imminent danger of anything.  I felt fine, with the exception of my biopsy lump.  I had no pain, I had nothing to fear really, but that sentence "You have cancer" strikes fear that is deep within.  Fear of a limited future, fear of leaving two children without their mother.  Fear of dying from an unforgiving and brutal disease.

A few years prior to my diagnosis, a friend of mine did indeed die from what started as breast cancer.  You cannot die from breast cancer itself, you die when it metastasizes to more important body parts, like your lungs or liver.  My friend had breast cancer 5 years prior to her death.  She had a double mastectomy and had reconstruction and all seemed well.  5 years later she had a pain under one of her implants, she went to the doctor and they said it was nothing, a possible injury.  Well the pain did not subside and on a subsequent visit to the doctor she was told her cancer was back and not only back, but it had metastasized to the liver and bones.  She passed away 3 months later leaving two boys without their mother at the young age of 45. In those 3 months I watched my friend go from a vibrant woman to a shell of that person, she looked like a little bird before she left us.  Cancer is a terrible disease.

Years prior to that another friend of mine suffered the same fate.  She had breast cancer, had the conventional standard of care treatments, the cancer came back and she passed away.  The details of this friend are not as vivid to me as she was living in England and I was here in the US during her ordeal, but again another vibrant woman was lost to this terrible disease and a young age.

I knew many people who died of cancer, some older relatives, some as young as 27 from breast cancer that metastasized, one the young sister of a school friend who died of leukemia.  It seemed to me that once you have cancer you will eventually die from cancer.  The exceptions in my life are people that have only recently had cancer.  It seems you are never cured of cancer until you die of something else.  That was my fear that one day I would not only die but would die of cancer, which is not a pleasant death.  And in the meantime I would be subjected to all sorts of unpleasant treatments which may or may not work.  

I knew I had to first tackle this fear, it is debilitating since you cannot sleep well when you are in fear, it is bad for the immune system and makes for a not very pleasant person to be around.  I was never a fearful person, I was not a worry wart.  I grew up in New York and felt I had a toughness about me as a result of my childhood environment.  At the age of 5 another neighborhood kid tried to mug me with a butter knife.  I stood my ground and he slunk off.  I worked in Manhattan in the late 1980s when you could not wear a gold necklace around your neck or it would be ripped off by some passing hooligan.  I walked around the city at night with keys intertwined through my fingers in case of being jumped by someone.  I would not go down without a fight in any situation and I was not going down without a fight here either.  I tried mentally to stop the fear.  It was easy during the day, I was very busy.  I worked full time as a software engineer and was fully engaged in my job, my children kept me busy after work with various activities.  I kept up my running which helped quite a bit, but it was the nighttime when the fear was at it's worst.  Lying in bed at night in the dark while my husband slept I was unable to sleep and thinking dark thoughts.  

I knew fear would undermine any other things I was doing to reverse the DCIS.  I felt fear could indeed wreak havoc upon my immune system and could possibly allow the cancer cells in the breast ducts to proliferate.  I knew I had to stop it, but fear is a tricky animal which in my case was primarily nocturnal.  

During my first pregnancy I watched one of those news shows like 20/20 or 60 minutes which aired a segment on Hypnobirthing.  I had wanted to have a natural childbirth and this seemed to me the way to go.  I found a local practitioner and after 6 classes and hours of listening to a very empowering guided meditation I achieved my goal and had a beautiful baby girl without the aid of an epidural.  Birth the way nature intended.  The guided mediation was on a CD, it suppressed my fear of child birth and the pain that may be associated with it and let nature take it's course.  Since guided meditation worked before I had every reason to believe it would work again.  

I scoured iTunes for suitable guided mediation tracks and finally settled on one that really worked for me.  I am an avid reader and had read a book by Anita Moorjani titled "Dying to be Me".  The book really spoke to me and I found that Anita had made a guided mediation.  I downloaded the track and started listening nightly.  After a few weeks I could feel the fear subsiding and I credit the guided meditation as a large part of the cure.  I still listen to the CD most nights, although I think at this stage I could sleep without it.

The second thing I did that really removed the fear was I visited a doctor of Chinese medicine who did energy work, not acupuncture, but energy medicine.  I had several sessions with her and one session specifically addressed fear.  Whenever I felt fear it was always manifested in my stomach.  One of the sessions addressed fear and focused on my stomach and by the end of the session any fear that was left in me was gone.  Even if I try I can no longer summon up those feelings of fear.  I can sleep very well at night and I am at peace throughout the day.  I hope you can find what will work for you since we truly have nothing to fear but fear itself.

The beginning

In August of 2013 I went for a mammogram, little did I know this would change my life forever. Within a week I was called back in for further assessment.  After another mammogram and an ultrasound I was told I needed a biopsy, that I had micro calcifications that may indicate cancer.  I was given rates of only 20% of those micro calcifications are cancer so there was nothing to worry about.  I had a steriotactic-guided core biopsy. As you can imagine waiting for the results was stressful.  I finally received the call and over the phone, while I was at work, I was told you have breast cancer, you will need either a lumpectomy, radiation and tamoxifen or a mastectomy.  At 49 this is not something I wanted to hear and despite the fear I was going to deal with this logically. I was told to go see a surgical oncologist.  I was stunned and scared, I was healthy, I ate mostly organic food, I had been a vegetarian for 32 years and I ran miles and miles a week.  How could this happen to me?  I had two children who needed a mother.

The next day I asked for a copy of the pathology report.  I had to do my own research as to what I was diagnosed with.  The report said Ductal Carcinoma in Situ, grade 1, ER and PR positive.  I turned to the Internet, I had never heard of DCIS and did not understand what this meant.  After much research I saw that this was a controversial diagnosis, that there were some doctors who did not agree with the current standard of care and that some advocated an approach of monitoring. That monitoring approach was for me.  I made an appointment with a surgical oncologist recommended by my primary care doctor.  The surgeon had the bedside manner of an ape.  My proposal of monitoring was scoffed at.  If I did not have surgery I would die, I had cancer after all. But I felt perfectly fine, except for the lump from the biopsy, I did not feel like I would die anytime soon.  I certainly was not taking this lightly either, I had two close friends who had died from breast cancer, both having gone through conventional treatment.  This surgeon was not for me.

I went to the Moffitt Cancer Center in Tampa near where I live.   Given that this was also a research center it surely would be interested in following someone who wanted monitoring.  Well I was met with the same standard of care, my options were lumpectomy, radiation and tamoxifen or mastectomy or death.  I was told not to read what was on the Internet, that the doctor's knew better. Something did not seem right to me with all this, I felt perfectly fine, I had no lump.  I started my research on cancer.  I found many accounts of people who had cured their cancer through a multitude of methods, however, many had some type of conventional intervention before turning to alternative means.  I did not want surgery, in fact my gut intuition was telling me to run from these doctors.  I was determined to come up with a way around it.  Having the surgery made no sense to me, it did not address the underlying issue that caused this cancer to begin with.   I decided to find what was wrong with my body.  That was 17 months ago and I am still here, healthy as ever and have decided to start my blog with my story mainly so other women who wanted a non surgical path could follow. My story starts here, there will be many other posts with details of my discoveries and progress.