2+ year survivors with alternative therapies

hello, i am a newly dx of mets, we have changed our eating habits to organic, eating more fish, fiber whole grains, fruits, vegetables staying away from fast foods, i really have begun to feel better, my bowels move much better, i dont feel so heavy.i really read the labels to see what kind of crap they put into our foods, and it really has me bothered by the amount of crap  they allow to be  put into our foods. its really no surpise why our kids have learning and behavorial issues. or that the cancer rate isnt higher. what amazes me is the the FDA will allow all the nasty products into our food chain especially processed foods. but yet they  delay the process of  any medical  progress whether it be holistic or conventional medicines.  what are you doing for your treatment?? my father gives me alot of information in regards to holistic living. dr weil, dr schultzs, and many more. i have done chealation and hyperbaric chamber for my scleroderma. i felt that helped greatly. heather 

Welllllllllllllll......I guess I'm a 'slightly mixed breed'.  10 years ago, I chose from the traditional 'camp', lumpectomy (surgery made sense to me) and Tamoxifen (made more sense to me than chemo for my HIGHLY ER+/PR+ bc).  I declined chemo and radiation because, quite frankly, they scared me more than my bc and the stats just weren't there. I went for a 2nd opinion on chemo and studied all the way there.  After about an hour, the Dr. (who was the head honcho at a BIG breast center and involved in one of the big studies with Tamoxifen...the name escapes me right now) said: "If you are going to twist my arm and push me up against the wall, I'd have to admit that you will do just as well on Tamoxifen alone".  I then had two opinions on radiation which was the more difficult decision for me and spent HOURS in a medical library reading research.  The first rad oncologist didn't give me any compelling reason for doing it...he actually said that it wouldn't increase my longevity...to which I said, 'then why am I here?'.  The 2nd rad oncol said: "you have to be at peace with your decisions and make them with the information that you have today and then don't look back".  I thought that was THE best advice I had gotten from ANYONE on my journey and still 10 years later go back to that frequently.  Since I had read all the negatives on radiation, I couldn't do it peacefully and decided if my bc returned locally, I would then do the mastectomy and have reconstruction without problems caused by radiation.  My bc was also left sided and I have asthma and didn't want heart and lung damage to compromise my QOL. I chose to change the way I ate, quit eating meat, quit drinking....actually developed a revulsion for those two things.  I had always been 'into' herbs and supplements so I easily wrapped my head around that and, in the absence of any alternative Drs in my area, I started researching on the internet, and reading book after book, and developed my protocol after finding 'like-minded' groups....NOT an easy feat 10 years ago and sometimes when I read this board, I think we haven't come very far...LOL.  My oncologist told me at year 3 that I should be VERY proud of myself because I had beaten this cancer and to keep doing what I was doing....a HUGE concession for him!!!  BTW, I had 2 lumps at the time of lumpectomy.  One I had for 20+ years and it was needled (aspiration) and deemed benign then.  There was always an obvious lump there.  When I had my lumpectomy, they removed my cancerous lump and my 'old' lump which again was determined to be benign.  Fast forward 8 years, I have a NEW lump/primary (different pathology).  I guess I missed that memo that said we are ALWAYS at a higher risk of developing a new primary because we have already had bc.  After agonizing over the breast biopsy (I wanted surgical excision due to spread of cancerous cells during other 'less invasive' breast biopsies.....YES, I know they can also be spread thru surgery but if the surgeon is careful, it is much less likely), I finally succumbed to it because I was SURE the old lump was nothing and my BS was SURE that the new lump was scar tissue.  I had both lumps biopsied and this time they BOTH came back as bc BUT with a 'wimpy' (my BS's words) diagnosis.  He told me that I fascinate him because usually when someone presents with a new cancer it is usually a worse prognosis and mine was actually better.  This time, I had a mast with recon and from the traditional camp, I chose Femara (for now).  ACTUALLY the medical community has come to think in the terms that I did 10 years ago that women with ER+ and especially with RARE tumors (all of mine have been of the 'rare' and 'rarer' types) get more benefit from anti-hormonals than from chemo and my Oncotype DX was EXTREMELY low.  At any rate, I guess you can say that I'm a 10 year mixed breed survivor.   Sorry this was sooo long.  Best wishes

Anne, I totally agree with you....since we are all individuals, I often wonder about the validity of statistics anyhow.  This brings us back to "the crap shoot theory".  I think we have to do what FEELS right to YOU (a follow your gut approach) and no matter what the stats say, it's 100% if it happens to you. It is all soooooooo very confusing!!  Best wishes!

Discussion near my heart...

After researching possible drug trials and talking to doctor's at MD Anderson, I found out that bc chemo's MUST have a solid tumor for the chemo to "find" for it to work. That chemos can treat cells in the blood and floating around cells are not true.  Only Leukemia's chemo can treat cells in the blood.  So...if you have your tumor removed prior to chemo how is it going to work?  It will only if, they did not do a good surgery and get it all or you already have distance mets it can find?  Small tumors and no nodes involvement why chemo?

A little about what I found about radiation...The top bc surgeon at the local research center near me, said that rads don't necessarily stop the cancer cell, but if you have recurrence they will contain them in a "hair net" like web.  This will slow the spread. But if you are like me and have a (or 7) recurrences that the chemo can not get through damaged cells and blood vessels to deliver the chemo in the radiated area.  I had skin mets one week after "very heavy" rads.  They new there was a possibility of skin meets and fried me.  Didn't help.  Also I had 4 recurrences on this side.  I would not let them do rads on the other side after learning this.  This surgeon said I'm "deep sh**" because of the rads.

Can't this people get all on the same page????

Flalady

Count me in here.  I'm now 56 and only had surgery (three of them); no chemo; no rads; no Tamoxifine nor AI's.

Chemo would have killed me quickly as I have co-morbidities.  Rads and AI's I declined (AI's due to side effects).

Have not partaken in alternative medicine, frankly due to cost.

Am currently in good health and am aware that it can change at any moment.  If my other illnesses don't kill me first, then I'll die from breast cancer.

I'm all about quality of life and so far it's been good.

Now, it doesn't mean that breast cancer hasn't affected me...it certainly has.  It's a very emotional disease.  At times, I have terrible survivors guilt and feel I should not be alive when other's are dying.

My doctors' are at a loss as to why I'm still alive and not one of them will give me a time table even though I've asked.  They told me they just don't know.  I was and still am at peace with my decision, despite the chagrin of my doctors.

I really don't want anyone to read this and think this is the way it should be done, or to be regretful of treatment.  It's a highly personal decision and absolutely should be discussed with your doctors.  If I was healthy at diagnosis probably I would have gone the conventional route.  In the book, "Almost Paradise", Generossa Ammon was diagnosed with breast cancer and refused all treatment except surgery and she was dead in two years.

Jelly

My wife's surgeon who is the director of women's breast cancer at UCSD here in San Diego gave us some interesting stats. She said that 7% of women have a mastectomy, no chemo, no radiation, and do just fine for the rest of their lives.

My wife chose to add in Bill Hendersons reccomendations and has changed her eating habits pretty dramatically. (which means mine have changed too). She is a year and a half out from surgery, and is currently clear according to all the diagnostic tools.

One thing I would like to add, an interesting article popped up, and I am still scratching my head. A "country doctor" has been using a mix of maple syrup and baking soda, mixed while heated. He has  dispensed his mixture to more than 200 patients diagnosed with terminal cancer. Amazingly, he claims that of that number, 185 lived at least 15 more years -- and nearly half enjoyed a complete remission of their disease." (take this with a grain of salt).

Now, the interesting part that I am trying to consider. The syrup acts like the contrast they use in PET scans, a sucrose based so that the cancer cells absorb more than regular cells, then the baking soda, which binds to the syrup is able to be delivered to the cancer cell, causes a PH balance shift, killing the cell. Has no effect on healthy cells.

The actual formula is to mix one part baking soda with three parts (pure, 100%) maple syrup in a small saucepan. Stir briskly and heat the mixture for 5 minutes. Take one teaspoon daily is what is suggested by Cancer Tutor but one could probably do this several times a day."

Anyhow, still scratching my head, trying to figure out the chemistry that is involved here. Would baking soda cause such a shift, how does it trigger, by cell process? Just curious.... anyhow,

Might work, might not. But the risk is what, sipping on some maple syrup a few times a day, and potentially curing the disease versus... gaining a couple of pounds? Dunno.  But something to consider once you get past the simplicity.

Anyhow, the stats I stick to are the surgeons, she has been doing breast reconstruction since the 70's and does very good work.

Erick,

Did the UCSD guy say what the average AGE was of those 7% who only had mastectomies and "did just fine for the rest of their lives"?? Could be a big difference in 70 year olds following that course, as opposed to 40 year olds.

Just curious. Numbers often represent exactly what we want them to.

Anne

HI,

A year after chemo I went through a strict juice and raw food diet.  It helped in many ways.  I felt cleaned out but eventually became protein deficient and weak.  I'm not sure if the cleanse is why I'm still here 16 years later.

I always wondered about the cause of my tumor.  A couple of months before I noticed the lump while it was fairly small my son age 2 slammed his elbow into that spot.  I remember it was extremely painful.  I wondered if there was a connection and was told no by my onc.  Just recently I changed to a new and better onc and asked her what she thought about it.  To my surprise she told me that when we are injured blood cells are sent to the injured area.  Mine just didn't know to stop but the good news was that healthy cells kept the golf ball sized tumor in check.  I let it grow because it did not show up in the mamm and the biopsy came back negative.  Finally after 8 months I had it removed and it was malignant.

Vicki

Dear Erick,

I am curious.  Does your wife every post on this site too?

Eric,

Although the maple syrup/baking soda does sound very intriguing, I am wondering if it can really change the PH of a cell if taken orally. The stomach is a highly acidic environment and I don't really think the soda would make it to the cells in its alkaline form. People have been using baking soda as a tx for "acid stomach" (heartburn) for years. I just picture one of those baking soda and vinegar science projects when I think of that combination. LOL! 

AlaskaAngel

Thannks for the reply.  Actually, I'm speaking on behalf of my wife who was diagnosed with stage 3 Her2-pos, with lymph node involvement, and non-operable.  Her oncologist recommended Herceptin along with chemo.  My wife decided to forego the chemo and opted for Herceptin only.  It's been over a year and she's doing well so far.  The initial response was dramatic,  but the oncologist told us that every patient responds differently to it.  I might add that she has also been on intravenous C ( 75-100 grams weekly or every other week) during the same period.  Whether or not that is helping, I don't know, but it has at least boosted her energy level (I'm thinking of getting on it myself).  As far as your experience with your oncologist, virtually the same thing happened to a friend of ours, as well as others I've noticed who post on this site.  I've always felt that going with a cancer group rather than an individual doctor was more beneficial as far as the interchange of knowledge and patients cases were concerned.  By the way, I see you were diagnosed in 2001 with your cancer - what kind of treatment have you been doing?

My wife is currently in New Mexico, taking care of her mother. Her mother was diagnosed with lung cancer the same time that she was diagnosed with breast cancer. Her mom chose to do nothing about it, no treatment of any kind, and now that choice is being dealt with. I actually found this site while looking for some info on alternative treatments, and the results.

The maple syrup concept is something I just ran across, coming from Bill Henderson's web site. It seemed intriguing. I have heard of IPT therapy, but nothing where one used the very make up of cancer cells against themselves. (sucrose for delivery of a cancer killing agent) My question then becomes, could they not do something similar for regular chemotherapy to make it more effective, so for those who choose the western medical route, that the therapy could be less of a dose for more effectiveness? IPT in reverse so to speak... Just curious. 

Badboob, you know, I am not sure about the process, I too wonder how the baking soda binds to the sucrose for delivery, but it would be a very interesting study....

Alaska Angel - I used to live in Alaska, for about 13 years. 2 years on again off again in Cordova, then moved to Anchorage. Hope you are enjoying the life... I will admit though, moving to San Diego has been nice.

Sucrose is digested in the stomach into fructose and glucose by glycoside hydrolase.  Undigested sucrose is broken down into its component sugars in the small intestine by sucrase.  From there, the glucose and fructose can be absorbed by the lining of the small intestine.  The body has regulatory substances to control the amount of sugar in the blood.  Excess sugar is stored as glycogen(starch) as a ready source of sugar. Insulin initiates the conversion of glucose to glycogen.  Glucagon is the counterpart to insulin and causes the glycogen to be converted to glucose.  Insulin and glucagon balance the glucose sugar in the bloodstream.

Fructose is broken down into 2 3-carbon moleucles by enzymes in the liver.  Fructose has been linked to insulin intolerance, but it is still under review.

However, what is imporant is that sucrose, the main component of maple syrup, is  just plain table sugar.  For the alledged benefit of maple syrup/baking soda, it would not make a bit of difference if maple sugar is used or table sugar in water.  It is the same chemical.  However, if you are talking about trace elements in the maple syrup, that is something different.

The point of the matter is that maple syrup or table sugar contain the same chemicals that are broken down by the body in the same manner.

Soda can be used as an antacid in the stomach. 

Sucrose never reaches the cancer cells.  The main sugar found in the blood is glucose, and smaller amounts of fructose and galactose.  Again, sucrose never gets to them little buggers to destroy them.

I am sorry if I offend anyone with this.  I am a microbiologist by training and want to correct any scientifc inaccuracies, not to downplay alternative treatments.

Hi, everyone,

I was told today by my doctor, that when they had the board meeting, that is the oncologist and the doctors, they discussed my case and recomended, chemo, I do not want chemo, and I will like to take alternative medicine, I know my body. I had a lumpectomy 2/27, a and they told me I had no clear margins, so I decided to do a masectomy on 3/18.  the path report from 3/18, indicates that there is no cancer.  Any advice, is greatly appreciated.