Survivors who had chemo etc and are into Complementary medicine
Comments
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Smoking - worst thing was having a CT scan that showed my lungs were OK. Onc didn't encourage giving up during chemo because of added stress. I know I'm totally crazy and I wish I wanted to stop for some bizarre reason I don't.
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Suz, you have to want to stop. I finally did and tried auricular stimulation and it totally worked for me. It will be 13 months July 2.
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Barbara, What is auricular stimulation? I have 2 kids who smoke, and anything that would help them stop would be good.
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Yay! This is great.
I have a question for you all. My naturopath had me on B vitamins, something for my adrenals, and iodine in addition to D3, fish oil, magnesium.
My oncologist asked me to stop taking anything more than RDA 100%, as supplements have not been cross-examined with Tamox.
This made quite a conundrum for me. I eat mostly veg, mostly organic, and have one HUGE vice: sugar. And occasional beer/wine.
What do you all think?
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Suz - I stopped so long ago it doesn't count. Agee with Barbara - it is so much a state of mind. When I stopped, really was more than 35 years ago, lots of my friends were stopping. The best adivce I got was something about "Seeing myself as a non smoker." And every time I was 'triggered' by what ever activity to have one, this is hard to explain, but you ( I) had to GIVE UP all over again, and talk to myself reminding myself I was now not a smoker.
Also kept a glass of water always at hand - sipping bits of water when ever the URGE to light up got too stong. And I think it was aobut 6 week, before I felt patterns changing. In those days it was mostly a "social" thing - we knew it was bad for us, but didn'thave the medical data available today. Or at least it wasn't all public.
Mostl I remember it really required unbelieveable ATTENTION to every activity. Helped that I stopped "cold turkey" - never had the patience for the easing off route.
GOOD LUCK. Aso so HELPS to have a buddy supporting you. As a present to a dear friend who was pregnant with her first child ( 1976) I gave her a GIFT of being her 'stop smoking buddy' - meant she HAD to call me if she was close to giving in. I remember the funniest call in the middle of the night, she was whispering from her bathroom cuz her husband was sleeping, she couldn't and was desperate for a cig - so we talked and laughed until she was sleepy again!
IT CAN BE DONE! Let us know how we can help.
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The only time I was asked to cut back on my vitamins was during chemo. My Onc. has supported the supplements I take, in fact he was the one who wanted me to up my D3 level. I take more the RDA recommendation on all the ones you mentioned as well as others.
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Love this thread. Reposting a link I had posted on the other thread. I liked this article thought it was analytical and balanced.
The Triumph of New-Age Medicine The Atlantic, July/August 2011 By DAVID H. FREEDMAN
http://www.theatlantic.com/magazine/archive/2011/07/the-triumph-of-new-age-medicine/8554/
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Auricular stimulation is a machine similar to a TENS unit where they zap your ears in several places. They say it unblocks the nicotine and you are not physically addicted to nicotine after your have it done. It worked for me and I did not have that brain fog like I had in the past quit attempts.
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I have completely changed my habits since BC dx. I was headed that way already but cancer sure sped up the process. I take supplements that I have researched for effectiveness and my diet is fish, fruit, veggies and fibre. Oh yea...and 85% chocolate...every day. I drink green and white tea all day. And I exercise and walk. I feel great and hope that my good cells are appreciating the change too.
I still need to do more meditation and would like to start yoga. We are in the middle of moving so my brain is pretty much wired up each day right now! LOL
Dr David Servan-Schreiber's book Anticancer: A New Way of Life is a great book to read. You can catch his program on PBS every once and a while.
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Hi Susieq and everyone,
good idea for a thread-conventional and alternative therapies don't have to be separate. I had a bilat, TC x4 and take tamoxifen. I also had reiki and acupuncture during chemo, and met with holistic counselor to review supplements.
1. I exercise at least 4 times a week, aerobic and strength training.
2. I do yoga and stretching-aim for at least every other day
3. Drink green tea and take some supplements (Vit D, B, calcium, St. Johns Wort for mood)
4. Try to eat little sugar, organic foods, and naturally raised meat.
However, I did almost all these things before getting bc, so who knows?
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Also wanted to let you know that the person who did Yoga for Breast Cancer very generously sent me a copy of her video. This is huge, as those of us at risk for LE need to think about modifications for certain poses like Downward Facing Dog and Plank.
The thing that has changed for me is not food. I never ate garbage (except my love for sweets). It's the stress. I had a horrible transition into my new job, and I've been stressed out by a pain condition for more than 10 years. To me, this was the real issue. And I'm doing so much better. Things don't give me a pit in the stomach the same way they used to. One of the great privileges of getting older is a much stronger sense of being able to tackle things without failure. It's from practice. Stress is so hard to eradicate. Right now, I'm dealing with my very difficult relationship with my brother. The tape plays in the head over and over...it's not healthy. But, easier said than done.
I'm glad to get feedback on supplements. I think I'm going to go for it more.
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Hi Ladies, Thanks for this thread! We all are interested in doing all we can to help ourselves recover and prevent a recurrence. I had a BMX in March, and have just finished 4 x TC. I was already on some supplements just for health and joint pain. My BC surgeon and ONC recommended stopping some during chemo, but now that I am done I am trying to get as healthy as I can before my reconstruction surgery. I too have been going to a Reiki person after each chemo. I was waiting till I felt better, but this last infusion, I went the day after, and that was by far my least amount of side effects! It is a wonderful way to relax as well. Good luck to all, and I look forward to reading all of your suggestions
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I try to really savor the food I prepare for myself. Not all meals, but usually dinner.
This impacts how I shop for things. So fresh in-season local asparagus, broccoli rabe, kale, local strawberries, frozen local blueberries, are some of the things I bought at the cheap produce stand last night. (Their prices are half what the same stuff costs other places.)
I do use sugar when I make baked goods....very seldom otherwise. Except of course when I make rhubarb as inedible otherwise.
I am trying to point out that I eat for pleasure as well as my health.
I do have my pre-treatment body which is toned and fit.
One thing: I don't pass up something like Tarte Belle Helene (French pear tart with chocolate and frangipain) when Le Panier has it. I have it with delicious coffee. These are the supreme pleasures in life. The trick is not to buy the on sale box of chocolate-covered donuts and eat the whole thing.
I cover the food groups, add in a few major treats a week, drink wine with dinner, eat fresh and local, and don't worry about the rest.
And I exercise enough to keep toned and fit, keep my metabolism stoked, and burn off the treats.
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LtotheK
Seems surprising to be asked to stay within existing RDA. Many now studying raising VitD3 levels up from the existing 400 to 2,000. Can't remember the group who published the study. Esp. calcium/magnesium RDA is low for women taking AI's. If I were you, I'd "google" around the web to find out more about that contra-indication for tamoxifen. I take Arimidex so don't know much about T.
As for the "sugar" - I went from honey in everything, to sometimes Agave (some thought now even that isn't as good as originally thought) - but honey is a step in the right direction instead of the white stuff. I tried various forms of steva ( sp?) but couldn't stand the after taste.
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I am a huge believer in the power of exercise. It doesn't just reduce your risk of a recurrence, it also elevates your mood. Also, if you are taking an AI there is a growing belief that exercise can help with joint pain. I'm a runner (training for my 2nd marathon) and I've been on Arimidex for over a year, but no joint pain.
Also, its important to do some bearing exercise for bone health. This is especially true if you are on an AI. I work out with hand weights twice a week.
I've been a vegetarian for 28 years, so I haven't focused so much on diet but I do try to buy organic if I can. It isn't always an option.
I take a multivitamin. At times I've taken supplements and may do so again, but right now just the multi.
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Sue, I stopped cold turkey 26 months ago and it nearly did me in, but I did it. I really do think they will find more and more ties between BC and smoking. There are some indications already, including a large meta analysis that came to light around the time I was dx'd. There are also studies showing an association between recurrence and smoking, although an association is not the same as cause and effect.
I tell you this because some people believe there is no connection and that makes it harder to want to want to stop. If it helps you, I could do some research for you and PM you some studies? Different things work for different people.
Let me know...I know how hard it is to even WANT to stop. There are some great online support resources which helped me. I had tried before and failed, too. So don't let previous failed attempts define anything for you.
A valuable aspect for me, too, was thinking of quitting as cancer treatment. It made it more bearable. Of course, everyone associates cancer treatment with pure hell, so if you have been diagnosed you sort of imagine you will have to go through the ringer in one form or another. Not smoking was my "chemo," if you will. My "hold your breath and get through this" experience, and it helped to think of it as a necessary rite of passage.
If you don't connect stopping smoking with something, it is more difficult to want to stop, I think. If the smoking becomes part and parcel of your breast cancer treatment experience, then every day that you stop makes you feel a little bit less afraid for your cancer future. Just my experience. Other successful quitters have different strategies. All I know is, if I did it, anyone can! :-)
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What Athena said, Sue. I also see it as a GIFT you are giving yourself. A way of helping your body heal from BC. You WILL ( after what I think it about 6 to 8 weeks) feel better. That may depend on how much you smoke. I was about 2 1/2 packs a day - back when a CARTON of the coffin nails ( as we called them) cost $5. at the discount drug store on 53rd & Third Ave in New York City....
Just the friggin' $$$$$ would get me to stop today. BUT, do not underestimate the addictiveness you're dealing with. Years ago there was an article in the New York Sunday Times Magazine talking about the addiction of tobacco ( long before the Congressional hearings, Rep. Waxman held) and showed how it was the MOST addictive habit, hardest to break, and reinforced so many times a day (50 in my case)
SO, it ain't easy - it is the opposite of easy - and it is SO WORTH IT. Really wish there was some way we could all Gather Round and Help You DO THIS...
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I want to join in too! I just had my exchange surgery last week and finished chemo in early May. I was healthy before BC but have stepped it up a notch! I too read The Anti Cancer and another book called Foods That Fight Cancer (also a very good read!) and have tried to eliminate soy, soybean oil, transfats, foods with hormones, refined foods, sugar, etc.... It has been hard to find foods I can eat, but I am committed to doing it as much as I can. I also decided that I refuse to live on sticks and grains the rest of my life so I am finding ways to prepare foods in a healthy manner that sticks to my dietary plan. I am baking low sugar desserts with honey, agave or stevia and limit myself to small amounts. I got a bread maker and started making organic bread without soybean oil that is in most breads products you buy. I am also going to get an ice cream maker...that's next on my list to make some low sugar, organic, natural frozen treats. I started a healthy cooking blog recently to share what I am cooking and share the organic shopping finds from my local markets. I was always an exerciser - I have taught aerobics for over 20 years. I now just make sure I exercise 5 times a week despite work and family. Exercise reduces risk by half! I too see a holistic MD. He has me on 8000IU vitamin D (liquid form), B complex, Vitamin C, Iron (I am slightly anemic from chemo), multi vitamin, pro biotic, citrus pectin, floresence tea. I need to try some different natural things for sleeping at night but for now I am using xanax....can't sleep without it. I will work on that. I am just starting tamoxifen again this week (I was off it for 2 weeks because of surgery) so I am hoping the hot flashes are not crazy like during chemo......blech! Once I master tamoxifen, I will work on a solution for xanax. Oh and I was a huge white wine lover before BC came along....now I indulge on Sat night. I may have 1 or 2 glasses per week.....still getting use to that...that is a big bummer!
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Sunflowers, I know. Her point was that there will never be enough tests to show whether certain supplements (like iodine, or DIM, which appear to be good for BC) interact negatively with Tamox. And why bother taking the Tamox if it's not working.
I am encouraged by posts here. I'm due back to my naturopath. She can get me recalibrated.
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mdg
The only "natural" thiing that I have used to help me sleep is homeopathic Valerian Root. I used to get it in liquid form, small bottle, in the health food store. A few drops under the tongue, or mixed with a small amount of water. This was many years ago, it may be in tablet form now too. I found it really work, with no side effects. I do NOT know if it interacts in anyway with other medicines.
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Susie.....Smoking is a serious addiction for many, me included. I smoked for years and then quit for six, started back up and quit again when I was diagnosed. About three months ago I stupidly started up again. Today is day one, once again of not smoking. Don't know why I keep doing this to myself. Husband does not smoke and seriously does not want me to.
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Sue:
Thank you for this thread - I love it.
I stopped smoking in 1986 - everyone in our family smoked and I had a cousin who told me she thought women smoked because it gave them something to do with their hands so I took up needlework (counted cross stitch was all the rage) I did so much counted cross stitch that people were hiding from me (honestly you should have seen someof the "gifts") anyway it worked - I stopped the cross stitch (although I still have boxes of thread, etc.) in 1995 because I was way too busy with moving at the time and then I became an avid gardener for 12 years. The hobbies replaced the smoking - hope this helps someone else - everyone is different.
I am "needle phobic" would accupuncture work for me or would it stress me out more??
Sandy
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I am back on the nicotine patches. That is the only way I can do it.
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sue, thank you so much for starting this thread. am dashing off to the beach, so little time to post, but will later.
love reading such great entries.
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Constatine is one fellow I trust. He use to post here on this board. He posts about complimentary and traditional. He can be found on Gina's (Nosurrender) website. Here are a few links to his site and some on Gina's site.
From Constantine's site:
Evidence Watch
ONJ Watch
http://onj-p.evidencewatch.com/
From Nosurrender's site:
CUTTING EDGE RESEARCH LIBRARY
http://www.nosurrenderbreastcancersurvivorforum.org/?forum=144796
Edge - Cam (I believe this is very helpful)
http://www.nosurrenderbreastcancersurvivorforum.org/post?id=4807927
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I'm right here with you all, having gone from what I considered a pretty healthy diet pre-bc dx (no fast food or junk food) to an 80% vegetarian diet (focusing on high antioxidant fruits & veggies) with just a bit of fish and even less natural chicken. I eat very little hormone-free dairy (Greek yogurt, a splash of milk in my coffee, or a bit of feta or fresh mozzerella in a salad), and I've also given up wheat, which has made a huge difference in inflammation. I use mostly agave nectar or Tupelo honey for occasional sweetening. I never even go to regular supermarkets anymore, buying everything I need at natural markets and organic Farmer's Markets. And I'm always on the lookout for new things to improve my diet, and have discovered some great things, like quinoa and a decent gluten-free pasta.
I've always taken a ton of supplements and still do (C, B-Complex, E, alfalfa, Omega 3's, CoQ10, etc.). Since bc I've added I3C (in lieu of an A/I), Iodoral, Green Tea Extract, Curcumin, D3, Bosweillia (for the joint aches), and probably a couple more that aren't immediately coming to mind.
I walk at least an hour a day. Some weeks I've done as much as 26 miles, but most weeks it's more like 15. I do other body work at a health club or at home, and I love hiking (when it's not quite as hot as it is here in the California desert at this time of year) and swimming.
I never drank much (at least past the age of 35), but other than a very occasional (like once every few months) glass of good wine or light beer, I've given that up because some of my bc was ILC, and I'd rather be on the safe side. I detoxed from caffeine pre-surgery and never went back to it. And, of course, I'm off the horrible HRT I was on for quite a few years.
I listen to healing energy CDs and fill my home with uplifiting music. I am much more conscious of the stressors in my life, and pay much more attention to my gut reaction to things, and I try to go with decisions that make me feel happy and centered, which means a lot more "no thank yous" to things I don't care about, and more time and focus on friendships and people I do. Deanna
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Susieq58, THANK YOU sooooo much for starting this thread!!!
I've been away for a while, and came back to devastating news about several people I really care about here. Then I saw the hideous aftermath of the latest round of petty BCO crap (deletions, reporting, banning, accusations, etc). It makes me feel nauseated and embarrassed for BCO. THIS thread is the kind of support we need here!!!
Everybody has had such great ideas and I'm inspired to recommit myself to some of the things I know I need to work on (exercise being my #1 bugaboo!)!
I see that many (most? all?) of us struggle with stress and relaxation, and I just want to share a wonderful, wonderful book I'm reading. It's called "Peace is Every Breath" by Thich Nhat Hanh. I can't recommend it highly enough. It's about the spiritual practice of mindful breathing, which sounds deceptively simple, but reading the book and putting the suggestions into practice has been amazing for me.
I've always felt that meditation was sort of..... ummm, I don't know... out of my reach somehow. I didn't quite grasp the difference between "spiritual" and "religious," and I didn't think I really had time or skill or patience to "meditate." This book is changing that. It has very short chapters, filled with practical, easy-to-incorporate suggestions to help calm my mind and bring me back to my self. Mindfulness doesn't have to take lots of time (in fact, I'm starting to find myself practicing it often, and it's wonderful!), and it really is easy to do at very brief "normal" times in my very busy life. Anyway, it's hard to explain without sounding over the top, but it really is a great book, and I'd love to hear from others who have read it and/or who have other suggestions!
Here's the book description from Amazon.com: (link HERE)
"In his travels around the country and the world, Zen master and international best selling author Thich Nhat Hanh witnessed a growing unhappiness among the many people he encountered. He saw the hectic pace of our day-to-day lives taking a toll on our health and well-being. In response, the renowned teacher sat down to write Peace Is Every Breath, a book that makes the core teachings of Buddha accessible for everyone. In this jewel of a book, Thich Nhat Hanh does not suggest that we escape from reality and put our busy lives on hold. Far from it. Instead, he provides the insight and tools we need to incorporate the practice of mindfulness into our every waking moment. Thich Nhat Hanh shows us how we can transcend the mad rush of our days and discover within the here and now our own innate ability to experience inner peace and happiness.
Offering personal anecdotes, meditations, and advice for mindfully connecting with our present experience, Thich Nhat Hanh guides us around potential pitfalls along the way. We do not need to escape reality to harness the joy and peace that is possible with every breath we take-the power of mindfulness can heal us from the suffering caused by the many stresses that surround us. Including original calligraphy by Thich Nhat Hanh, Peace Is Every Breath is a timely book filled with timeless wisdom and practical advice that is destined to become a classic."
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You ladies are very inspirational!! I'm right there with you on the whole diet/lifestyle thing - gotta get back to work, so I can't post right now. But keep up the good work - you are all amazing!
WE ARE BEATING THIS!!!!!
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A couple of tricks I've learned in getting myself to exercise. I bought a bunch of CDs that had routines up to 30 minutes, no more. I've been pretty good with them. I also have a gym within walking distance, that makes a big difference. But it's still a complete pain to organize and get to. I find the tapes really make it possible for me to be consistent. My favorites: Shiva Rea, Classic Pilates, and Yoga for Breast Cancer--my new fave!
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LtotheK
Is the Full name Gentle Yoga for Breast Cancer by Esther Myers? That's the one I foudn when I googled..
thanks for the suggestion - I have some tapes, but can't follow many of them -
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