January 30 2008 post. A couple of days ago a blog reader privately suggested that I create a permanent page listing all the personal stories that have been published on my blog and the ones that may get posted (in the comment section only) in the future. This will ensure that they won’t get “lost.” It’s true, I have more than 250 posts now, so yes, blog readers’ stories will eventually be impossible to find again, even for me! So this is a brilliant idea, thank you!
Yesterday I took off some time to go through some of the older post comments searching for personal stories (I will post only the ones that have been published on my blog; I will NOT publish any personal exchanges, of course, no worries), but I may have missed someone, so please remind me if you don’t see your story posted here. I have taken the liberty of editing out the parts that I thought less important, but feel free to scold me if I took out too much.
And by the way, I will be happy to post any stories concerning supplement-taking and dietary changes, so please don’t hesitate to send me the details. Now and in the future. And you can also send me updates as your story progresses. They don’t have to be success stories, necessarily, of course.
The following is not paraphrased, but is in your (blog readers’) own words.
February 25 2008 post. MGUS story. A MMA and Beating Myeloma list friend sent me a fabulous bit of news yesterday morning via e-mail, as follows:
I was diagnosed with MGUS. Feb.06, m-spike 0.03, went up to 0.07, and then I took control, took all your advice and listened to my body. I worked my way to 5 grams of curcumin among other things. Reduced stress, soaked in 104 degree water twice a day. Last test before Dr’s appointment: 0.02. The day of appointment I had another test, just got it back: “NO monoclonal protein detected by the current electrophoresis study.
She takes the following: Andrew Weil’s Daily Multivitamin, Daily Antioxidant, Immune System Builders that include ashwaganda, cordyceps, astragalus, Siberian ginseng – the quantities are prepackaged in an AM and PM dose.
She also takes: Life Extension Super Curcumin with Bioperine 800 mg, 3 pills in the morning and 3 in the afternoon. Lysine: 1000 mg, 1/day. Resvera Wine Complex 500 mg, which contains: grapeseed extract, ellagic acid, & resveratrol, 1/day. Guggul Plex 340 mg, 1/day. Zyflamend softgels by New Chapter, 1/day. Yaeyama Chlorella 400 mg., by Yarrow Formulas, 1/day.
She writes: I am anemic if I am not careful and I take Slow FE-47.5 mg. slow release iron-doesn’t upset my stomach.
Every morning and afternoon, she soaks in a 104 degree hot tub for 35 to 45 minutes and, she adds, there I do nothing but soak- it was hard to learn.
She adds: “I eat lots of veggies, some fruit and meat 2 or 3 times weekly (salmon, or whatever I’m craving, meatloaf last week, buy organic whenever I can). If I crave an old evil food, I eat it- it’s usually not as satisfying as I remember, and it takes care of the craving, although I recently made a German chocolate cake. Lots of nuts, focusing on walnuts- make my own chocolate bars by roasting walnuts and pouring Ghirardelli’s chocolate (bought at Trader Joe’s) over top, keep it in my freezer for a quick fix. No coffee, diet anything, fast food. Use real butter (organic) and olive oil- did notice a difference for the better when I gave up Smart Balance. Try to keep all food real—very little pre-prepared. In spring and summer frequent my local farmer’s market. Juice carrots every other day, and buy Green food juice at Trader Joe’s. Drink tons of water. I have early retired, and I now do projects that used to take 1 day. I now spread them out over 3 or 4 days. If I’m fatigued, I do nothing. I’m careful to avoid stress, I have started saying no to volunteer situations. I’m 58, I have neuropathy from the waist down -large areas of no temperature feeling- reflexes not strong below the waist- My doctors are now saying fibromyalgia just because they don’t know. But if I listen to my body I can do anything I want, just slower with planning- I used to be a construction worker and have worn out my spine. Hope this helps.
January 27 2008 post. Sherlock’s story (also see Sherlock’s Page): “I’ll just say how I took my curcumin capsules (8 gr./d). I took them all together (I follow a personal theory of the ‘atomic bomb’), late in the afternoon or late at night. I’ve not been very regular in the way I took them because I work out of town and sometimes is really difficolt for me to get hot milk and melt there 16 capsules of curcumin. So I used different systems, according to the situation:
– capsules melted into hot milk
– capsules taken drinking hot milk
– capsules taken drinking cold milk (not so often)
– capsules taken with just water
sometimes my stomach was empty, somethimes was full.
When I melted the capsules into hot milk I added either some olive oil, or some butter or some chocolate. Most of the time I did not add anything. My protocol also included 1.5 gr of quercetin and 1 gr. of fish oil every day. That’s all. I’m very happy that curcumin worked even if I changed the method of assumption according to my daily schedule. I think the most important thing has been to take all the 8 gr. together. My body knew that once a day a big dose of curcumin was going to cause apoptosis where it was needed.”
JHope (she has been taking curcumin for more than two years, as I recall): “I have been taken curcumin – approximately 10 grams/day in podwer form (with bioperine) dissolved in hot milk. I also add fish oil (lemon flavor). I have been doing this for 2 years. My IgA marker has improved to the point that last test in December it was only 63 points above normal. This week I went to see a multiple myeloma specialist and shared with him what I was doing and he said to continue taking it that he has another patient that is doing the same and his numbers have improved tremendously. He also suggested to drink green tea.
Earl: “I have comments that could be helpful to others. My wife passed away 10 years ago due to MM. Five years ago I got a “pre-cancerous” prostate called high grade PIN. The doctor said there is nothing you can do except watch it……..I said, ” I think not.” I came up with a plan after checkng the internet extensively. I was able to REVERSE the pre-cancerous cells; as of August 13, 2008, they became non-existent. It was the last of three biopsies. Big picture: I went to an ALL organic diet; got a vita mix and drank approx 48 ounces a day of vegetables (Kale, broccli, red cabbage,parsley,carrots, and apples)…it tasted awful but I didn’t care. Also took “ground” flaxseed, cod liver oil, Aloe Vera, Vit c, N acyetal cysteine (NAC), Saw Polmento, Zinc, and selenium. Walked 45 minutes every day, lost 25 lbs and never regained the weight, stopped smoking and drinking. I stopped eating red meat and went to free range chicken and wild catch fish. BIG PICTURE: I placed all good things in my body and kept out the bad. The doctor reluctantly said I have changed the cell structure back to normal again. I have added curcumin the last 2 months: result, my triglycerides went down to 71 and my CRP, C-reactive protein is .2 The inflammation in my system is about 0…..a very good indicator of no cancer. If this article helps someone I will be happy. I too watched test results for 12 years and know the fear and excitement with bad and good results. I was VERY disciplined…..I realize that. But I made a choice to live and it worked. Sincerely Earl”
January 23 2008. Alison: “I was diagnosed with Stage 1 Myeloma last year and have been taking curcumin largely as a result of the research you have compiled on your blog. Initially my PP levels were rising slightly each time I had a test but my PP has been stable the last three or four times which is great. I spoke to my oncologist in London on my last visit. He is open minded and accepted some research papers to read on Curcumin and EGCG and said it would be interesting to see if my levels went down, so I was really pleased by his reaction.”
December 10 2007. Louise: “I am using Curcumin for stage 4, breast metts in the plural and liver. I have chosen not to do chemo again and go the natural route. It has been 7 months and I have bet all the odds. (Survival rate for plura in the lung is 6 months). I am 42, and thought, that this time, I needed to change my insides for the better. I went on juice veg juice diet, all vegan no more sugar, white flour, wheat, dairy etc. Curcumin, is 2 tbs a day with flax oil and lots of black peper, on empty stomach. Tastes like rat doudou but it works!!!!!! All my inflmation in my back and joint pain from the Arimidex is 80 % down. I also take Green magma and just to cher you on,. my levels have been dropping like crazy. CA 125 normal…and CEA(inflamation) on a downword spiral from 1197 t0 84. So, I may never be cured but I am CONVINCED by the results I am living, that I can manage this as a long term illness but major life changes. Also taking SALBA (salba.com) with I also use as flour and egg in baking healthy treats. Oh, and I cut out meat and soda and jucing. NUTRITION is key!!!! see book and also search on web : Dr. Richard Beliveau, University de Montreal. I wish you the best, and please tell all to add much BLACK pepper to their mixture. Essential for absorbtion. Louise from Canada”
September 7 2007. Fabio: “My father has been diagnosed MM five years ago (smouldering), now since 2003 he takes the curcumin every day and in the time I’ve read some articles and document about it. However the MM is stable for four years. Fabio from Italy.”
April 23 2007. Carole: “My husband has been taking 10 grams of curcumin for over a year. (He is 2 1/2 years into pancreatic cancer.) His GI system is clear, but we are watching a spot in his lung (too small to biopsy.) He had an upper left lobectomy in October. His doctor (head of GI medical oncology at MD Anderson and a collaborator with Aggarwal) says he is not sure why he is doing as well as he is and has encouraged us to keep up with the curcumin.”
Margaret, you have a great website, and it is helpful both because of the content and because of your positive attitude and optimism. It’s inspiring.
I have prostate cancer, having been diagnosed in October 2014. I was treated with external radiation therapy. I’ve been taking curcumin daily for nearly a month. In the last few days I have come to feel a craving for curcumin, during the day, as though my body is urging me to take more (current dosage, 4 g with piperine, taken after dinner). Have you heard of such a thing before? What’s your take on this?
My husband takes 8G C3 curcumin complex from Dr. Best, no more sugar & wheat, little carbohydrates, lots of vegetables, meat 3 times a week, lots of sun, also 3G black cumin seeds, crushed, 2 capsules Ashwagandha, several beta glucans , Peak Immune 4, IP-6 and Maitake.
unfortunately there has been no improvement AT ALL in the light chain markers since January. Just an increase in the light chains. I think a negative report should definitely come into play here…