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Stage 4 NED Survey

Posts: 69
Joined: Jan 2011

I am interested in finding out what people are doing if anything to prevent cancer reocurrance. As I reported in an earlier post I am stage 4 , and have been NED for 25 months. I once asked my doctor if there had ever been a survey done of those that had survived stage 4 for 5 or more years to see if they had done something in common to prevent reoccurance. He said he wasn't aware of any survey. So I thought it would be interesting to conduct my own survey. So everyone out there who is stage 4 and NED could you answer a few questions. I will list the questions followed by my information.

Months NED- 25
Diet- Mediterranian,no red meat, green tea, tumeric, lots of fruit and veggies
Exercise- 3 hrs/day
Supplements- Asprin, resviratrol, Co-Q-10, multi-vitamin, fish oil,vitamin D in winter
Other- Visulize my anti-bodies attacking the cancer cells
Maybe we can learn from each other. Thanks.

Lovekitties's picture
Posts: 3372
Joined: Jan 2010

If I read your post correctly, you are looking for folks who are NED 5 or more years.

While there are some who post here, you might find more to respond on the Long Term Survivors board.

Posts: 69
Joined: Jan 2011

I did not intend to limit the survey to 5 yr survivors. Anybody who is stage 4 and NED can respond. Thanks for the tip about a Long Term Survivors board. I will check that out.


Posts: 8
Joined: Jan 2011

I am stage IV, and still counting my NED time in days instead of weeks or months, but recently I took the ride down to Dana Farber to meet with Dr. David Rosenthal, Medical Director, Zakim Center for Integrative Therapies. Dr. Rosenthal talked about a "three legged stool", that is 3 issues that I need to address in minimizing the probability of recurrence: diet, exercise, and anxiety minimization. I am implementing the following plan.

Dr. Rosenthal recommended 10 servings daily of fresh fruits and vegetables. After I reminded him that it was winter, and we live in New England (60" of snow this season and counting), he suggested that most people who work find it difficult to get to 10 serving of fruits and vegetables daily. He told me that many of his working patients put a variety of either fruits or vegetables (not both as mixing fruits with vegetables doesn't taste good) in the blender in the morning, mix the mash with ice and put it in a thermos. Then they could eat the mash all day. He also gave me a list of recommended fruits and vegetables. Instead of duplicating the list, I'll just say that the list focuses on dark colors. He also recommended avoiding red meat, and processed sugar. Fish is preferable to poultry. I had read a book that recommended also avoiding white flour and pesticides. Dr. Rosenthal stated that "the evidence for eliminating white flour is unconvincing", and he was on the fence regarding pesticides. That is, he thought it would be generally a good idea, but did not recommend avoiding certain produce if you could not find an organic source (using red grapes as an example). In summary, Dr. Rosenthal recommended a diet that maximizes flatulence.

The doctor recommended a minimum of 180 minutes per week of exercise, mixing strength training with cardiovascular, with more of the latter. He said that we could kill 2 birds with one stone while engaging in exercise such as tai chi, qi gong, and yoga.

Minimizing Anxiety
The Zakim Center has programs in Reiki, massage, and acupuncture. He mentioned an active clinical trial that they are doing with acupuncture, and that they had to "fake" acupuncture for the control group.

Upon my return home, I focused my debrief with Cynthia on the notion that we could satisfy both the exercise and anxiety minimization requirements with lots and lots of sex. (I think she bought it...)

The doctor recommended dietary supplements of 0.5 - 1 gram of omega 3 fish oil, and 2000 IU of vitamin D-3. He also recommended 2 books: "Eat, Drink, and Be Healthy" by Walter Willett and "Relaxation Revolution: Enhancing Your Personal Health Through the Science and Genetics of Mind Body Healing" by Herbert Benson and William Proctor.

I presented the list of chinese herbs on John's blog to Dr. Rosenthal. He reviewed the list, consulted with a TCM colleague, and sent me the following reply via email before I had arrived home:

Pleasure meeting you.
This response is from one of my TCM clinicians. He is a PhD as well.

The listed herbs are generally commonly used herbs in TCM, especially "Bai Hua She She Cao" and "Ban Zhi Lian" have been used for anti-cancer agents. There are many lab and animal studies suggest their anti-cancer properties. The combination is safe to use if patients are not on chemotherapy. Although this combination has been widely used with chemotherapy together in China but specific clinical evaluation regarding interactions have not been reported. I can see this combination to be used in post chemotherapy patients who have completed primary treatment and on follow-up.

My best to all,


Kathryn_in_MN's picture
Posts: 1258
Joined: Sep 2009

Only probably NED just now. I'll be on maintenance chemo for a while for sure. One day at a time. I hope to get back to my usual healthy diet and exercise soon.

The other thing is I will go back on my Isagenix products that I took after my resection until chemo started. I felt the best I had felt in years when I was on those products, exercising daily, and eating mostly raw fruits and vegetables, whole grains, and some fish and seafood. No red meat. No sweets. No alcohol. I also took vitamin D3, calcium, fish oil, and a probiotic (Orthobiotics).

I have a friend who was dx'd with stage IV breast cancer and not given long to live. She's still around 10 years later, and gives a lot of the credit to the Isagenix products too. She uses complimentary medicines, exercises daily, uses Isagenix, and still gets her one maintenance chemo once every 3 weeks.

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