Add Your Knowledge posts written by Ann Fonfa, advocate
Evidence 'Equivocal' for Antioxidants in Cancer
Treatment - Jun 21,2008
As a patient advocate, I deplore the fact
that a full 15 years after my own diagnosis, we still do not have
usable information (in the view of these authors) to definitely say if
it is okay to combine antioxidants with chemotherapy or radiotherapy.
This
is SO unfair to people with cancer. On the other hand, there is no
meaningful evidence showing danger, just guesswork. Is that enough to
tell patients to avoid commplementary use of vitamins, acupuncture,
homeopathy, or the like during therapy that is KNOWN to be harmful to
patients - that is conventional chemotherapy and radiation therapy.
There
is plenty of level 2 and 3 evidence as to the value of fresh and
organic produce, avoiding JUNK food (soda, fried foods, white flours,
etc.) that people can read and react to. We wish they would - read it
that is. We support the idea of combining healthy
lifestyle/nutrition/exercise/relaxtion/detoxification and the use of
supplements.
We also want to point out that vitamin E succinate
is considered the appropriate antioxidant with radiation therapy not
d-alpha tocopherol. Avoid N-acetyl cisteine at this time. There are
studies on this.
Ann Fonfa President www.annieappleseedproject.org
MedPageToday.com
Saturday, June 21, 2008
Sunday, February 26, 2006
Saturday, November 30, 2002
Ann's Comments Pharmaceutical Give-aways
Newsletter #74–November/December 2002
Letter to the Editor
Dear Editor:
Diane de Lara’s article “Exhibitionist Behavior” [September/October] was a delight to read. I have attended many medical and other meetings and found [the American Society of Clinical Oncology] to be the absolute worst offender. The gifts and giveaways are huge, and everyone wants them.
Pharmaceutical company representatives offer another tote bag to an attendee at the San Antonio Breast Cancer Symposium (Photo: Ann Fonfa)
When de Lara asks, “Are the high prices we pay for drugs subsidizing this pageantry?” the answer is a resounding yes. Add to that the money spent for direct-to-consumer advertising, and their support of advocacy and patient groups for all diseases all over the world, and you find an awful lot of excess profit.
Meanwhile, Congress continues to discuss subsidies so elder Americans can afford their pharmaceutical medications. Hey, lowering prices might work.
Ann Fonfa, Founder The Annie Appleseed Project New York, NY November 2002
Pharmaceutical company representatives offer another tote bag to an attendee at the San Antonio Breast Cancer Symposium.
Letter to the Editor
Dear Editor:
Diane de Lara’s article “Exhibitionist Behavior” [September/October] was a delight to read. I have attended many medical and other meetings and found [the American Society of Clinical Oncology] to be the absolute worst offender. The gifts and giveaways are huge, and everyone wants them.
Pharmaceutical company representatives offer another tote bag to an attendee at the San Antonio Breast Cancer Symposium (Photo: Ann Fonfa)
When de Lara asks, “Are the high prices we pay for drugs subsidizing this pageantry?” the answer is a resounding yes. Add to that the money spent for direct-to-consumer advertising, and their support of advocacy and patient groups for all diseases all over the world, and you find an awful lot of excess profit.
Meanwhile, Congress continues to discuss subsidies so elder Americans can afford their pharmaceutical medications. Hey, lowering prices might work.
Ann Fonfa, Founder The Annie Appleseed Project New York, NY November 2002
Pharmaceutical company representatives offer another tote bag to an attendee at the San Antonio Breast Cancer Symposium.
Tuesday, March 7, 2000
Ann's Thoughts for Cancerlynx.com
Random Thoughts of a breast cancer activist:
I started wondering about things just a few weeks after my first surgery, a lumpectomy in 1993.
I wondered why the brachial nerve was cut in my arm, causing a numb area that never really fully recovered. Did you think this was a necessary part of surgery? Susan Love, MD, told me years ago it did not have to be cut. My own (first) surgeon told me he cut it because it might have developed scar tissue and then would need to be cut - he pre-empted that!
I wondered why he took 18 lymph nodes from my underarm without even mentioning this surgery to me. I KNEW I did not want to do chemotherapy but he took away my options. I thought in 1993 that it was really nutty to destroy part of the immune system so casually. Now in 2000 we have the option to try sentinel node biopsy. Tell other women about this. The vast majority of us do NOT have involved nodes( up to 60%). We should continue to search for other ways to determine staging.
I wonder why the doctor told me that lumpectomy with radiation was THE best way to go. I later found the study done by the government-sponsored NSABP (National Surgical Adjuvant Breast and Bowel Project) B-06. This study was done to determine if lumpectomy was as good a surgery as mastectomy. They just happened to create three arms-mastectomy, lumpectomy with radiation and lumpectomy alone. Well, the survival proved to be the same-IN ALL THREE ARMS. But my doctor did not tell me about this - did yours?
I started to wonder why the FDA (Food and Drug Administration) was approving drugs that did not impact on survival. They look for tumor response because it is measurable. Good for scientists and pharmaceutical companies, but not so good for us patients. They say at their meetings that "survival is the gold standard" but somehow that is not what is used to judge a drug's merits. The sad news is that tumor response usually DOES NOT CORRELATE WITH IMPROVED SURVIVAL.
I just keep on wondering. I ask questions. I listen for meaningful answers. I do believe they will come, but only if we ask meaningful questions. Back in the 1960's when many of us were teenagers or in our 20's, there was a slogan that said Question Authority. I keep thinking about that. I hope you will too.
Ann Fonfa, Not a born cynic but very uncomfortable with business as usual
Posted March 27,2000
www.cancerlynx.com
I started wondering about things just a few weeks after my first surgery, a lumpectomy in 1993.
I wondered why the brachial nerve was cut in my arm, causing a numb area that never really fully recovered. Did you think this was a necessary part of surgery? Susan Love, MD, told me years ago it did not have to be cut. My own (first) surgeon told me he cut it because it might have developed scar tissue and then would need to be cut - he pre-empted that!
I wondered why he took 18 lymph nodes from my underarm without even mentioning this surgery to me. I KNEW I did not want to do chemotherapy but he took away my options. I thought in 1993 that it was really nutty to destroy part of the immune system so casually. Now in 2000 we have the option to try sentinel node biopsy. Tell other women about this. The vast majority of us do NOT have involved nodes( up to 60%). We should continue to search for other ways to determine staging.
I wonder why the doctor told me that lumpectomy with radiation was THE best way to go. I later found the study done by the government-sponsored NSABP (National Surgical Adjuvant Breast and Bowel Project) B-06. This study was done to determine if lumpectomy was as good a surgery as mastectomy. They just happened to create three arms-mastectomy, lumpectomy with radiation and lumpectomy alone. Well, the survival proved to be the same-IN ALL THREE ARMS. But my doctor did not tell me about this - did yours?
I started to wonder why the FDA (Food and Drug Administration) was approving drugs that did not impact on survival. They look for tumor response because it is measurable. Good for scientists and pharmaceutical companies, but not so good for us patients. They say at their meetings that "survival is the gold standard" but somehow that is not what is used to judge a drug's merits. The sad news is that tumor response usually DOES NOT CORRELATE WITH IMPROVED SURVIVAL.
I just keep on wondering. I ask questions. I listen for meaningful answers. I do believe they will come, but only if we ask meaningful questions. Back in the 1960's when many of us were teenagers or in our 20's, there was a slogan that said Question Authority. I keep thinking about that. I hope you will too.
Ann Fonfa, Not a born cynic but very uncomfortable with business as usual
Posted March 27,2000
www.cancerlynx.com
Thursday, April 1, 1999
Article on Personal Success
So many times the a criticism of
anecdotal is leveled at alternative therapies. Here is my success
story. Not a friend of a next door neighbor’s cousin or some such but
me personally.
Like too many of us, I was diagnosed with a local recurrence two years after a lumpectomy. I opted for a second lumpectomy against recommendations. That was nothing new for me, I had refused radiation based on my discovery that it offered no survival benefit for women with no lymph node involvement and small tumors(under 2 cm.).
That same month I began an intensive program of alternative treatment. I began the "Kelley" program using metabolic enzyme therapy. I had doubts about its efficacy from the beginning but I stuck with it for about 9 months. I also did a program of colonics and herbs. I flew to Canada with a group of women and learned how to take 714X.
Nothing seemed to work. I continued to produce very slow growing tumors in the breast, culminating in a mastectomy that September 1995. As soon as I woke from the (same day) surgery, my doctor told me I would need radiation to the chest wall as that was now in danger of recurrence. Again I refused, but I was horrified to hear this news.
I went to a clinic in Mexico, spending three weeks learning the Gerson program. I stayed on this program for a full eighteen months. However, while on it I developed a series of small skin recurrences at the scar site. Several were surgically removed and found to have an S phase of just 1.5%, slower than normally growing cells. I felt this demonstrated the basic rightness of my methods to have such a slow growing cancer. Chemotherapy was not appropriate and I had no intentions of using it. In consultation it was decided that I should try high dose Vitamin A. There is plenty of precedent for using this, as retinoic acid. It has been experimented with in lung and head and neck cancers. There has been some work done in breast cancer as well. It has been used in Germany successfully as well. A talk at the American Association of Cancer Researchers discussed a three year trial that had shown efficacy in tumor reduction. Dr. Maurice Black (See more on Dr. Black on this site) and now his associate, Dr. R. Zachrau have been experimenting with Vitamin A for many years.
My physician in Mexico suggested I buy Vitamin A at my local store and use 300,000 I.U.’s each day for the first seven. Then switch to 150,000 daily. I began taking small tablets daily. I found that I needed to break up the dose into two to avoid discomfort. It was strongly suggested that I take a blood test every five weeks to check liver function as Vitamin A is said to be "toxic" to the liver. It might also make the skin on my fingers peel, make me dry and perhaps cause headaches. I faithfully took it from March 1st until I noticed a change in the tumor just three weeks later. I told my husband I thought it might be shrinking. By the next day I knew it was shrinking. I contacted my doctor in Mexico and he said he was so glad I was taking this product-liquid A and of course the liquid Vitamin E at 1600 I.U. Well, that was the first time I had heard that part but since I had experienced tumor reduction, all was well. I did switch to the liquid form which he said left the body more quickly. The Vitamin E was to help balance the overuse of a particular vitamin. I upped my Vitamin C to 4 grams and selenium to 400 mcgs(twice the normal dose).
About eighteen months later I had the remnants of that tumor surgically removed. This is what we found: it was well differentiated, it had very few malignant cells and the estrogen and progesterone receptors had TRIPLED(30% to 90%). Well differentiated meant that it looked like normal cells. Receptor status when it declines is said to be a sign of disease progression. So I was happy. Over the counter vitamins had shown a successful tumor reduction.
There were two problems. The first was that tumor reduction is not necessarily a correlate of increased survival and is an argument I use against the standard drug therapy approval methods. Still it seemed like a victory, especially after the pathology report. Secondly, I had developed another tumor at the same time as I reduced one.
What to do? From my experiences at scientific conferences and my readings, I knew that cancer cells are complex. They can respond one way at one time and another way later. Look at how Tamoxifen could turn from being an estrogen antagonist(anti) to an agoniste (estorgen promoter) over time. Obviously my experience had shown me that some things worked some of the time. I began looking for the next method.
At that time I was sent information about a clinical trial about to begin in New Jersey, using Maitake mushroom extract. I had flirted with this product over the years but never used it seriously or in a committed way. Japanese research had shown that the substance could reduce tumors and modulate the immune system. I purchased four bottles and began using two droppersful daily beginning at the end of June 1998. The tumor was about the size of a long-grain grain of rice set on a vertical axis. I continued to use the product daily until I ran out of it at the end of October. Two and a half weeks later, I noticed that the tumor had gotten smaller. It continued to reduce, I restarted the Maitake as it was the only new thing I had been doing and I felt there was a connection.
As I write this in April 1999, I still have a tiny shred of the tumor. In a similar manner to the reduction in 1997, the tumor first shrunk to half its original size, then shrunk in half daily. I have experienced NO side effects, either from the Vitamin A regimen nor the Maitake extract.
I want to emphasize that these methods are best overseen by a physician especially if you can find a sympathetic one. The cost is really low and I had no negative effects. The original bottle of Vitamin A tablets cost $8.00. The liquid costs about $16 and lasts three weeks. The Maitake D-fraction is a bit more, each bottle between $30 and $45 depending on where you buy it. Still, a small cost even when we have to pay it ourselves. The blood work done every five weeks was mostly covered by insurance. I came to know a lot about how to read blood tests and follow them with interest now.
These methods worked for me. There is nothing special about me except that I faithfully follow a regimen of supplements, healthy eating and detoxification at the same time as I used the above products. If it works for one person, it can surely work for others. At no time have I had chemotherapy or radiation. It is now more than six years since my original diagnosis. Only time will tell but that is true for all of us whether we have cancer or not.
In health, Ann E. Fonfa The Annie Appleseed Project (212)545-0050 AnnFonfa@aol.com fax 545-0025 www.annieappleseedproject.org
Ann developed new tumors subsequent to this writing and by June 1999 began using Chinese herbs under the supervision of Dr. George Wong at that time head of Herbal studies at the Strang Cancer Prevention Center. She took the herbs for almost 14 months, starting and ending with an MRI. By September 2001, she was shown to be cancer free.
Like too many of us, I was diagnosed with a local recurrence two years after a lumpectomy. I opted for a second lumpectomy against recommendations. That was nothing new for me, I had refused radiation based on my discovery that it offered no survival benefit for women with no lymph node involvement and small tumors(under 2 cm.).
That same month I began an intensive program of alternative treatment. I began the "Kelley" program using metabolic enzyme therapy. I had doubts about its efficacy from the beginning but I stuck with it for about 9 months. I also did a program of colonics and herbs. I flew to Canada with a group of women and learned how to take 714X.
Nothing seemed to work. I continued to produce very slow growing tumors in the breast, culminating in a mastectomy that September 1995. As soon as I woke from the (same day) surgery, my doctor told me I would need radiation to the chest wall as that was now in danger of recurrence. Again I refused, but I was horrified to hear this news.
I went to a clinic in Mexico, spending three weeks learning the Gerson program. I stayed on this program for a full eighteen months. However, while on it I developed a series of small skin recurrences at the scar site. Several were surgically removed and found to have an S phase of just 1.5%, slower than normally growing cells. I felt this demonstrated the basic rightness of my methods to have such a slow growing cancer. Chemotherapy was not appropriate and I had no intentions of using it. In consultation it was decided that I should try high dose Vitamin A. There is plenty of precedent for using this, as retinoic acid. It has been experimented with in lung and head and neck cancers. There has been some work done in breast cancer as well. It has been used in Germany successfully as well. A talk at the American Association of Cancer Researchers discussed a three year trial that had shown efficacy in tumor reduction. Dr. Maurice Black (See more on Dr. Black on this site) and now his associate, Dr. R. Zachrau have been experimenting with Vitamin A for many years.
My physician in Mexico suggested I buy Vitamin A at my local store and use 300,000 I.U.’s each day for the first seven. Then switch to 150,000 daily. I began taking small tablets daily. I found that I needed to break up the dose into two to avoid discomfort. It was strongly suggested that I take a blood test every five weeks to check liver function as Vitamin A is said to be "toxic" to the liver. It might also make the skin on my fingers peel, make me dry and perhaps cause headaches. I faithfully took it from March 1st until I noticed a change in the tumor just three weeks later. I told my husband I thought it might be shrinking. By the next day I knew it was shrinking. I contacted my doctor in Mexico and he said he was so glad I was taking this product-liquid A and of course the liquid Vitamin E at 1600 I.U. Well, that was the first time I had heard that part but since I had experienced tumor reduction, all was well. I did switch to the liquid form which he said left the body more quickly. The Vitamin E was to help balance the overuse of a particular vitamin. I upped my Vitamin C to 4 grams and selenium to 400 mcgs(twice the normal dose).
About eighteen months later I had the remnants of that tumor surgically removed. This is what we found: it was well differentiated, it had very few malignant cells and the estrogen and progesterone receptors had TRIPLED(30% to 90%). Well differentiated meant that it looked like normal cells. Receptor status when it declines is said to be a sign of disease progression. So I was happy. Over the counter vitamins had shown a successful tumor reduction.
There were two problems. The first was that tumor reduction is not necessarily a correlate of increased survival and is an argument I use against the standard drug therapy approval methods. Still it seemed like a victory, especially after the pathology report. Secondly, I had developed another tumor at the same time as I reduced one.
What to do? From my experiences at scientific conferences and my readings, I knew that cancer cells are complex. They can respond one way at one time and another way later. Look at how Tamoxifen could turn from being an estrogen antagonist(anti) to an agoniste (estorgen promoter) over time. Obviously my experience had shown me that some things worked some of the time. I began looking for the next method.
At that time I was sent information about a clinical trial about to begin in New Jersey, using Maitake mushroom extract. I had flirted with this product over the years but never used it seriously or in a committed way. Japanese research had shown that the substance could reduce tumors and modulate the immune system. I purchased four bottles and began using two droppersful daily beginning at the end of June 1998. The tumor was about the size of a long-grain grain of rice set on a vertical axis. I continued to use the product daily until I ran out of it at the end of October. Two and a half weeks later, I noticed that the tumor had gotten smaller. It continued to reduce, I restarted the Maitake as it was the only new thing I had been doing and I felt there was a connection.
As I write this in April 1999, I still have a tiny shred of the tumor. In a similar manner to the reduction in 1997, the tumor first shrunk to half its original size, then shrunk in half daily. I have experienced NO side effects, either from the Vitamin A regimen nor the Maitake extract.
I want to emphasize that these methods are best overseen by a physician especially if you can find a sympathetic one. The cost is really low and I had no negative effects. The original bottle of Vitamin A tablets cost $8.00. The liquid costs about $16 and lasts three weeks. The Maitake D-fraction is a bit more, each bottle between $30 and $45 depending on where you buy it. Still, a small cost even when we have to pay it ourselves. The blood work done every five weeks was mostly covered by insurance. I came to know a lot about how to read blood tests and follow them with interest now.
These methods worked for me. There is nothing special about me except that I faithfully follow a regimen of supplements, healthy eating and detoxification at the same time as I used the above products. If it works for one person, it can surely work for others. At no time have I had chemotherapy or radiation. It is now more than six years since my original diagnosis. Only time will tell but that is true for all of us whether we have cancer or not.
In health, Ann E. Fonfa The Annie Appleseed Project (212)545-0050 AnnFonfa@aol.com fax 545-0025 www.annieappleseedproject.org
Ann developed new tumors subsequent to this writing and by June 1999 began using Chinese herbs under the supervision of Dr. George Wong at that time head of Herbal studies at the Strang Cancer Prevention Center. She took the herbs for almost 14 months, starting and ending with an MRI. By September 2001, she was shown to be cancer free.
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