An Alternative approach to Stage IV Health and choices
Comments
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Yay! Glad that you are stable! And yes, moving can knock anyone for a loop - it's so much work!
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Praise God for stable thats-life!
I love that Heidi...calling a truce with Cancer. I do believe, I could go at this pace for a nice long while if we could just all get along.
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Hello. I have been lurking here for a few months. Usually spend time on the Stage IV thread. A quick introduction. I am Lisa. Hello
My most favorite person in the world was dx'd Stage IV March of 2010. Lung, liver, adrenal gland. Lots of chemo later and Faslodex, lung is clear, liver is back on the move and a couple of mets on her pelvis. SIRT is half done, left lobe was radiated a coule of weeks ago, right lobe of her liver in a couple weeks. Currently on Aramosin and scared to start Affinitor. We talk about this site often. She rarely posts, it is hard for her to read some of the posts, and I get it. I read, make notes, ask her onc and her husband and her questions. I ask questions about everything, even before cancer became part of my world. We talked about diet and exercise and until those dang bone mets showed up, talk was about all we did. I run. Have forever. I also eat. I love food and Guiness. I know not one thing caused cancer, and agree with the gals that is a perfect storm of stuff. My view is maybe a perfect storm of stuff can push it back – diet, exercise, supplements, light treatment, acupuncture, meditation, western medicine, whatever all working together. I sound like a commercial for integrated therapy, not my intention. After thinking about it, the brain said, then do something to change, do as much as you can to make her body unfriendly to cancer. So we started with diet and exercise. And astragalus and ashwanghanda and other supplements I can't remember. I never thought it would be as easy as it has been – eating plants, not so difficult. And I love cooking, so learning new stuff, also fun. And juicing is a wonder that my boys nor I will ever tire of – you put in a carrot or beet as hard as a rock and out comes juice! So oil, meat, dairy, processed refined stuff and booze out. The goal is to get to 75% of our diet whole grain, plant based. And to keep her feeling her best through all the bullshit. Doable. There is my rambling introduction. I really hate stupid cancer and want my best friend around for a good long while. Just wanted to say hello, and get you all ready for questions that I am sure I will have. LisaAnd hooray for stable and good, healthy gums and teeth!!!
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Lisa: Welcome to the thread! Your friend is so blessed to have someone like you in her life...someone who will research and look for the most positive tx's to keep the cancer at bay. Fortunately she listens to you. My friend who died of lung cancer last year did not want to hear of anything but conventional tx and she literally starved to death from being overdosed with chemo. It was heartbreaking to watch.
When I was dx with bc last fall, I immediately changed my diet and lifestyle to one of anti cancer, exercise, supplementation and so on. No chemo or radiation for me. I do take tamoxifen in a smaller dose than was recommended along with other cancer additives prescribed by my ND. As a result, I've lost about 14 pounds, have more energy, and feel that my body is in optimal shape to prevent a recurrence. I'm 71 years old, but feel like I'm still in my 30's. I thought I was doing all the right things before, but bc was a wake up call for me.
Even if one elects conventional tx, failure to change diet and lifestyle choices is asking for trouble I think. A strong healthy immune system is the key to prevention and recurrence. Keep working with your friend to make sure she is on the right track.
Sending you prayers and positive energy!
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Lisa, I love how you put it (i'm paraphrasing) "A perfect storm caused this cancer, so maybe a perfect storm can push it back." That's a great way to think about it. Welcome to the boards - I hope you find a lot of useful information.
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Hi Lisa...
I know you from the Stage IV forum and I think you're a wonderful support to your friend! I like the "perfect storm" analogy too, and I also like what you said about making the body "unfriendly to cancer," something that I've been thinking a lot about lately. Especially concerning sugar. I just want to achieve the best balance I possibly can, mentally and physically, so I can stay alive as long as I possibly can! I think you'll find this thread interesting and informative.
Rose.
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That is a great way of looking at it. I"ve been trying to do the perfect storm for awhile.
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Hi everyone,
I haven't posted on this thread yet, but I am looking for some motivation and advice to stay on my healthy eating plan. I have been trying to follow the diet by the Block center, very similar to other recomendations, lots of veggies,fruits, whole grains and some proteins.
It is so hard! I have 3 kids and while they aren't super picky, something like quinoa with veggies for dinner brings lots of moans and groans. I am just on Herceptin and tykerb, but still so tired I find myself turning to frozen pizza or chicken tenders, and then I end up eating the junk too.
I have been NED for 15 months and want to do everything I can to stay that way, but I am having such a hard time sticking to such a strict eating plan.
any websites that have quick and easy recipes? Anyone else with kids?
Laurie
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I have been on the Engine 2 plan. My goal is to make the 28 days of eating plants and whole grains with as little deviation as I can. After today 12 to go! This weekend we went camping so didn't follow the recipes so much, had a hot dog around the campfire and an egg and 2 beers
Other than that I have been right on. I have 4 kids. A large 46 year old and 3 boys, 12, 9 and 7. I know how I work, for me a countdown is the best. A start and a finish. And the recipes are actually pretty good. Some are fantastic. Once I get the 28 days done I'd like to stick to 75% of my food being plant based or whole grain. And I think I will do better than that. Tanya is doing her best to do this diet as well, and my folks and sister joined in for solidarity. I made a calendar of meals and exercise and for each dinner I take a photo of the plate just so they see what it looks like. It has to be fun to get the kids involved over at my house, and the countdown on the fridge does that. I make them chicken or fish or hot dogs on days when I know when the veggies alone won't cut it. The fruit is a hit. Pasta and rice too. I have to ease them into the beans and stuff. I am learning to cook better, less oil, more whole grains, etc. So far, so good. If you'd like the calendar countdown pm me and happy to share. Even the photos if you'd like. It's nice to do something with a group and giggle and laugh and snort about some of the kooky things we are preparing and eating. Off to eat my orange mousse Lisa -
Oh glorious food! I have kids and I am slowly getting them to eat the same as me. At first they complained about brown rice. Now it's eaten and I don't think they even remember it came in white. I add broth to it to give it some flavour as well as mix it with wild rice. We only eat brown rice pasta as well. Kids can't tell the difference. I find when I make things I can't eat I make a big salad to go with dinner so I eat that and make a piece of fish in the toaster oven. Quick and easy. A lot of the time the family is wanting a bite. I make spaghetti sauces and other things up in big vats to have on hand for those days where I am too busy to cook from scratch. You can also buy gluten free pizzas. I found it to be a challenge but the longer you do it the easier it gets. Here are a couple of my favorite go to sites. My youngest won't drink milk now she prefers the Almond milk. So it's what they get used to. Good luck! And cheating every now and then is ok. Ya gotta feed the soul too.
http://www.healthfulpursuit.com/
And here's a delicous torte.http://ohsheglows.com/2011/06/03/chilled-double-chocolate-torte-the-no-bake-version/
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3littlegirls: I agree...kids eat what they are given and become accustomed to. My little year old DGGD will eat spears of steamed broccoli just as though it was a cookie. On the other hand, my DGS will not touch any food but chicken tenders and french fries:(...sad.
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If we have pizza or chicken nuggets I either skip it or have just a tiny portion and concentrate on my fruits and veggies. Yes, it's more work because you always have to have the healthy foundation with the not-so-healthy extras. OTOH everyone else is eating healthier because it's right in front of them.
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Well the 'stable' good news was short lived..as i wrote on the stage IV forum, i found a lump on the back of my neck last week. Saw onc this morning, he said looks like cancer, progression
The rest of my body was stable in scans. So progression in lymph gland, he thinks. He mentioned radiation if its local..not sure if i want radiation to neck. Any thoughts on that?I will be switching to an AI, and zoladex, im ok with that. But as i have mentioned previously, my enthusiasm re anticancer diets and regimes waned over the last year, it was hard to keep going on my own. I need to seriously give this a go. In Australia we are limited re alt treatments. Can anyone with any information re options in Australia please help me out here. And can you all please help me decide on the right diet/supps to get stuck into. Please dont worry about giving advice, its only food, and i will make my own mind up re that, but i would really like opinions on the best approach.
I wish i had the enthusiasm and hope i had 22 months ago, can we get that enthusiasm back? Can we stop discussing our rights to post on the alt forum, and start discussing alt options pros and cons? Or if thats not possible, can someone direct me to sites that can encourage and support diet changes etc at stage IV?, thanks.
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Oh, thats life, I'm so sorry! That totally and completely sucks!
Have you read Anti-Cancer: A New Way of Life? The website is www.anticancerbook.com
I also like www.lifeovercancerblog.com
They both recommend plant-based, very little or no meat or dairy (organic if you are going to eat meat or dairy), no sugar, no white flour, no processed foods. If you want, I can start a thread with Anti-Cancer recipes.
Here's what I take for Supplements - N-Acetyl-Carnitine - 1000mg, Bromelain - 1000mg, Melatonin - 20,000mgs - Vitamin D - 10,000IUs, Maitake D ProFraction - liquid form twice a day, Low-dose Neltrexone (not a supplement, have to get a prescription.) Someone has been talking about Fucoidan - very interested in that.
Have you considered Mistletoe or AveUltra? And maybe contact Kat about the Protecel?
Got to go to bed, but I'm sending a big hug to you!
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That's life, that sucks. You've done so much to try to keep this under control, it must be so disheartening. I really don't know what you can try next but with a palpable lump you may be able to assess what is working and what makes it worse, like Kat, so maybe you can use it to fine tune your diet and lifestyle choices.
I'd be wary of radiation to the neck too, and the stage IV radiation thread might be able to help there. Sorry I can't offer more, I feel so useless on hearing this news.
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jlw..dont be disheartened!..I havent tried at all. Just researched my arse off until i had overload, ate well for about 3 months...hopeless really. I kind of lost my way, and put my head in the sand. I think i had a false sense of security while stable, but this has made me realise that i need to act now!, not keep researching but start going for it
....sweetbean, i would love you to start that thread...
and thanks
I started reading Kat's thread yesterday, I am intending to post on your thread Kat, just need to adjust to this news. i will look into whether we have it available in Australia. -
I stopped meditating months ago, forgot to do qi gong, lost a bit of hope while reading about the mutations that occur when we develop this disease, i spend alot of time thinking about mutation, and whether it can reverse. Do you know that with one cancer, the tail of a chromosome (number 13 i think) detaches, moves around to the other side and attaches to one on the other side, using a 'jumper' gene...weird and whacky stuff.
I have read too much, have too much info going around in my head, and cant put it into a coherent plan. So i have been floating along, tired, drained and worried, but not doing much to help myself. I want to be truthful here, so there is no confusion or comments re 'failed' plans. I havent even got one yet
I think i should get back to basics...eat, pray, love so to speak. and rest.
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I don't know if there's anything in Bill Henderson's ebook that can help if you don't already have it. Here is a link to the second edition, dated 2007. If you like it, you can probably buy his latest edition. You can save it on your computer.
http://theiceblog.files.wordpress.com/2008/12/2871191.pdf
I sent some other links in a PM.
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And... there are no "failures" in alternatives as we have no guidebook or standard of care to follow like conventional medicine. We battle to communicate and find suitable treatments due to the opposition, disapproval and criminalization that pushes alternative cancer treatments underground. So whatever improvements we can manage buy more time in addition to any time gained with conventional treatments.
Be proud of your efforts in these circumstances.
(((((Hugs)))))
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That's-Life. I put a call out last night to a gal named Kathy/Cathy who works for the manufacturers of Protocel (to make sure the distributors are doing their job) to ask her what the thoughts were to switching formulas from 23 to 50. I'm sad to report that I got absolutely no where with this woman. I asked her if Elonna (from elonnascorner.com) was credible with her advice? She said she was a 'sweetheart' and 'kind of' credible. That was a crappy answer and I quickly got off the phone feeling more on an island than ever.
Originally, it was said by the Sheridan family to start and stay on the formula that matches your cancer. Now, some random person has come up with the idea that aggressive or metastatic cancers should go on 50. Since there are basically no scientific members of the family left it's hard to discern what is the right answer. She said I was to call Dr. Kim Cassidy at the Vitamin Depot. I know she charges 25.00/half hour for a consultation. It's no worse than a co-pay I suppose. I would love to hear what she says. Hell, I may call her myself as my bottle is almost ready for refill. 330-634-0008 You can also call me if you would prefer...I don't charge anything! I'm in Illinois but I usually get up early 0500 and go to be bed around 9pm. PM me for my number.
You and I have a similar mets so to speak since we can palpate the tumors. I've been doing very well on Protocel 23 for 6 weeks and then I introduced Paw Paw to the equation while still on the 23. 3 months total now and I think I at the very minimum I"m stable and hoping for marked improvement.
The three months I've been on this is the same amount of time that I would have spent on afinitor and I know I am doing much better than had I gone that route...no matter what my outcome is. Even if I die tomorrow, I am still better off.
I'm sorry you're going through this. I'm sorry we all are!
xoxo
Kat -
that's-life: I'm so very sorry to hear of your progression. You were one of my inspirations to stick to a holistic approach to my bc treatment. I do believe that our immune system is the key to peventing reurrence and progression, and we have to keep it as strong as possible. We all know that excess sugar is our enemy as it feeds our cancer, so keeping that as low as possible in our bodies is important. Giving up sugar and white carbs at a minimum is necessary I think for anyone who is having progression.
There are others on here that can be much more helpful about supplements and such. I am also taking low dose Naltrexone...have been since my surgery. It has no SE's and one doesn't really know if it works..unless the cancer doesn't progress, then I guess it does. My ND had also suggested mistletoe, but said to save it as a "big gun" if there was progression, so you might want to look into that. It's big in Germany...no so much so here in the US.
There is also the IPT therapy which is a low dose chemo that I would try before going on to any of the conventional treatments. I think all of these alternate methods have a better chance if they are used prior to any conventional treatments, because you have kept your immune system intact.
Please know that you have a lot of people praying for you and sending you positive healing energy...myself included.
Keep us posted.
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Thats-life, I responded to your post in the Stage IV thread. Don't give up hope that it's benign. Until I see the evidence I'd try to not think about it, and definitely get back on a healthy eating and exercise plan.
Did you see jenrio's take on Kathy Rich's book?
http://killerboob.blogspot.ch/2012/04/kathy-richs-red-devil-book.html
Imagine you are in India and start eating tons of curry! That's easy for me to say because I love curry. Hope you do, too! ((Hugs))
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Karra, and all...I just read the link for the 'new sub groups' of breast cancer which you can find in the blog that heidi linked to above. It is worth reading. I wanted to add here a paragraph from the link. very relevant i think. Stay inspired Karra, ive been talking the talk, but not walking the walk, you have done some wonderful things to help yourself
thanks for the support everyone. Kat, i will pm you soon, thanks."Finding the drivers
One thing immediately became clear from the new map. Different ‘clusters', or subtypes, seemed to be characterised by genetic variations at certain ‘hotspots'.These were associated with the activity of large groups of other genes. This is what you'd expect if a single genetic mutation was turning on lots of different cell processes associated with cancer.
The team looked in detail at these genetic hotspots, to see if they could find the gene or genes responsible. This analysis showed up some ‘old friends' - for example the gene that makes the Her2 protein. But it also revealed some entirely new genes that had never previously been linked to breast cancer.
These are potentially excellent targets to develop the next generation of Herceptin-like drugs.
Intriguingly, one of the clusters (Cluster 4, below) contained both ER+ and a sub-set of triple-negative tumours with - paradoxically - a good prognosis. But these tumours didn't show any large-scale gene defects. Instead, the team spotted subtle deletions, not in cancer genes, but the genes of the immune system. (my bold)
Checking the original biopsy revealed what was going on. Looked at down the microscope, these tumours were packed full of white blood cells. It seems that, for some women with a supposedly poor outlook, their own immune system somehow comes to their rescue, holding the tumour at bay. This had been observed before, but never in such detail. And certainly not as a distinct ‘type' of breast cancer." The ten ‘clusters'
Here's an overview of the characteristics of each of the clusters identified:Cluster Outlook Copy number defects Comparisons and other notes
1 Intermediate Chromosome 17 ‘Luminal B'-like, generally ER+
2 Poor 2 x faults on chromosome 11 Mixture of luminal A&B
3 Good Very few ‘Luminal A'-like
4 Good Very few, mainly immune system genes High levels of immune cells in tumour
5 Extremely poor Chromosome 17 (Her2 gene) Mixture of ‘Luminal B' and ‘Her2'
6 Intermediate Region of chromosome 8 deleted ER+, generally Luminal
7 Good Chromosome 16 Luminal A
8 Good Chromosomes 1 & 16 Luminal A
9 Intermediate Ch 8 and/or 20 Luminal/ER+
10 Poor 5-year outcome; good long-term outcome if alive at 5 years Chrs 5, 8, 10 and 12 Basal-like -
Hopefully this link works now.
I probably belong to Cluster 4. Have always had autoimmune issues: allergic asthma, systemic lupus, Hashimoto's thyroiditis, hayfever. The breast cancer could be an immune defect in both our cases.
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I think what is most interesting, is that cluster 4 doesnt apply to any specific BC status. I have been watching advances in treating her2+ bc, and kept waiting for new treatments and trials for hormone driven bc, losing hope as time went on. this study has reinspired me to believe that our immune system is capable of influencing outcome, thank god, as i had lost motivation to try, and had started eating pink iced donuts. The key word i got out of that study is 'somehow'...."their own immune system somehow comes to their rescue" While that is still an unknown factor, i can hope that I can influence the outcome.
Re starch: Maybe we could start a starch free recipe thread too, because that is something I find hard to eliminate, or reduce on a daily basis, and is a key factor i think, in dealing with this disease. if i start it, no one will probably reply (lol), so hopefully someone will go for it. I saw another stage IV woman ask about a daily example of food etc on a thread discussing diet..Im wondering, if like me, she may just be so preoccupied and drained by what we deal with on a daily basis, it gets hard to organise our lives and make those changes. So if some of you could help us, with examples of recipes, as you have done sweetbean
or tips, or examples, or shopping lists! we would probably be very grateful. xneck and brain ct yesterday..results monday.
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I too have an autoimmune condition, psoriasis. Although it's always been assumed to be restricted to the skin and sometimes bones and nails, a new study shows it causes inflammation throughout the body including liver, blood vessels, joints and and aorta. Since inflammation is linked to cancer that could be the missing risk factor as I have few otherwise. Maybe there will be new studies to see if there's a link. The study images show the damage.
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I don't have psoriasis, but my son struggles with it on his leg. The liver connection is scarry. He likes to drink with his friends. Alochol is hard on the liver. I wish they would come up with a cure for psoriasis.
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That is interesting joylieswithin. I also have psoriasis that started a good 10 years before my cancer diagnosis. That's life...I would join your thread! I struggle too with breads and startches. Pink icing donuts sounds fabulous!
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I've been doing the 2 days a week low carb, 5 days a week sensible eating and am amazed that my weight is going down as my BMI is 22 so it's hard to lose weight. I have too much belly fat which is very unhealthy, especially for estrogen production.
Eve and Smiley, I've has the psoriasis constantly for over 3 decades on my scalp and sometimes my face. It eased during each of my pregnancies but then came back worse. Hormonal link? Same thing when I went on a gluten free diet, so I've given up gluten again and only eat grains occasionally. I'll wait for a few weeks then stop the topical treatment. I must keep experimenting now I know about the inflammation.
PS, totally off-topic, my little brother has just had laser surgery on his eyes after 40 plus years of being almost blind without glasses and contacts worn together for severe myopia. He expects to have 20/20 vision in another day when they settle and has given his glasses to charity. What a miracle.
I write this as he has a new lease on life thanks to medical progress. Maybe miracles will come along for all of us sooner than we think. Never give up hope!
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My dream donuts are chocolate iced but pink sprinkles could enhance them.
So I am in the right place. This has been a fav threaad for me for months but I don't post here really, once or twice.
I am awaiting many tests and a dr appt next week due to
Exhaustion - smell smoke often - lymph glands get swollen in chest - axillas are both swollen, though one w cancer before is post-surgery trauma and lymphedema - pain in right and left breasts - exhaustion - nauseous - dizzy spells - yippy ---- edited to change yippy to tippy ---- confusion - exhaustion -
the big one, there is a mass 5x larger than the first one in right breast, so say both my GP and the new onc I am going to so I can get the tests (don't tell him that I am an alt please LOL)
I have searched and studied for months, nearly a year - there are so many choices. All of them take cash I do not have at present. We are tapped out after a year of constant supplements and paying for everything oout of pocket except the surgery and tests (still doing the copays).
It's not that there are not great choices. Money is an issue for most. Protocel, PolyMVA, 714X, Protandim, Fucoidan caps, acupuncture, Chinese herbs, IPT therapy, UVB therapy, H2O2 IVs, all take cash, ins does not help.
I am going to start an ebay sales program that is for my alt cancer tx fund, really, if I can wrap my mind around doing it which I have proven so far I cannot.
I too need to step up and break what I call my candida cycle. I did a great detox, evil thing, for about 16 days near perfect. I lost 20 pounds and my tummy and swelling and face was not swollen either. In doing that detox I also LOST THREE LITTLE MASSES in the side of right breast, GP knew they were there too, not they are not. Same w Chinese herbs and acu got the bean thingee w cyst on left side that was not cancer supposedly since no one checked.
I am multifocal and there was a positive margin seems on all sides now that we are in hindsight mode. The detox did that. I started to eat again, strawberry shortcake w cool whip, tis the season, my mom used to make it, i wanted it, I blew it. Swollen again, boobs hurt, have to go back.
To re-devote myself to choosing life is difficult. I don't want to do this. I want to play at it my way. I know better and after witnessing the inside of the cancer center on magic Monday morning where they were all awaiting tx, I know I want to keep going for QOL and this alt way.
That's Life, you admit you did not have a plan. I sort of did, have spent so much money on it but ran out of money. And the food plan, that I did not entertain, thought I could do it without the food plan for the most part.
Now I need an all around plan, we all do.
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