Monday club lol
Comments
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Good for you June. Proud of you for standing your ground and going for a second opinion. Sounds like you got the right doc. Have I got this right? No chemo and no rads, just tamoxifen? I can't quite go that far I'm afraid. I'm having rads. And tamoxifen My planning appointment for rads is on Monday. A little nervous.
Pipers, I'm going to keep looking into alternative therapies like iodine. If you hear of some others I should know about, please let me know. I dearly need info on calcium intake. But I guess I'm lazy or on mental overload, cuz I keep not looking it up.
I'm almost back to numbland again. Don't have a direction any more. It bugs me.
Jodi my dear, where have you been. How are your little girls? How is your treatment going. (((hugs)))
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red -
Thanks, I wish to god I made the right decision.
Oh you are going for radiation next week? How's that investigation?
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LOL on my nature doc June--yes I like him too--he's a Chinese man who uses acupuncture meridians to dx.
On the hyperthermic stuff, the only places that have clinics that I know of are a new one in Canada and around six in Germany. Several Hollywood stars have gone to Germany to have tx, and Farrah Fawcett went to a clinic there but did not do the hyperthermic tx and she went the conventional route first.
I think it's good that you're going to SK--they do seem to be more up on integrated meds than most and have a great database of herbs and supplements on their website with the studies that tell just what is known or suspected, and how they may interact with chemo. Meanwhile you'll want to concentrate on boosting your immune system and the exercise will help.
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I wanted to add another thing too about my choice to not do chemo: the dreaded chemo brain! Docs dismiss it like it's no big deal, but the list of symptoms reads just like that of AD/HD, and I have been living with that hell all of my life. What most people do not realize about AD/HD is that it adds a whole complete layer of stress to your life that is always there. You are constantly stressing out b/c of many little things: you're running late (again!), you forgot to do something important, you paid bills late (again!), someone is always mad at you, someone made an appt with you but you heard it wrong and got the wrong date or time, someone needs something like a piece of paperwork but you have no idea where to even start looking for it (which pile!), you set out to do an important job but keep getting sidetracked, people often don't like you b/c you drive them crazy and don't cue in well to social nuances, school is a nightmare even with a high IQ, procrastinating is constant and is stressful in itself, your parents/kids/spouse/friends are always saying or wondering why you don't just try harder. . . I could go on and on but you get the picture.
Life is so much harder with AD/HD that I can't imagine that I'd want it to be worse--life would literally not be worth living for me--as it is, death sounds like a release. Not that I want to die just yet--I thought I did at one time, but have discovered a new will to live and these last few years on meds have been the happiest of my life. The meds only do half the job but that's better than nothing. People with AD/HD will never be able to take on as much as normal people--they may get amazing jobs or start businesses, but they're most successful if they can delegate the paperwork to someone else, so if someone gets chemo they should make plans to kick it back during and for an indefinite amount of time afterwards as well. I know it sounds like I'm being overdramatic, but believe me, I am not exaggerating one thing.
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piper - in terms of theory, the hyperthermic treatment really make sense to me, but gosh, it does seem like it's not even available in the US. sigh., boy exercise, i am a couch potato by nature so exercise is very tough for me. i have a gym in my bldg but i found it so boring. i started doing those youtube aerobic thing, i enjoy it more. so we'll see. i live so far so not sure what to do after i start working again.
btw is there any of you on disability? my onco was telling me it's tough to get granted if i do opt for chemo or radiation. sigh....it's so wrong on so many levels. i don't know the result yet, will see.
oh sorry about the AD/HD, my ex is an scattered brain so i could understand a little how frustrating that is for you. well, he's not frustrated, its me who's so annoyed at looking for stuff as a life style. after surgery, the anesthesia fried my brain a little as well. like i am reading BCO and saw something i wanted more info so i clicked a new tab to google, once the new tab is there i forgot what i was going to google. it happened before it's kind of normal sometimes but now it's like often.
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oh one more interesting thing i want to share with you about the onco meeting yesterday.
the onco was suggesting about an injection to suppress my ovaries and then i said ya chemo was going to put me to menopause for sure. (ya i have a habbit jumping around during convo) then she said she it's either chemo really that powerful or bc chemo shuts down the ovaries and women went thru it didn't produce female hormone as much as postmenopausal. i found that theory very intriguing.
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June, sorry but I really don't know what that means. Still wishing you the best but I have no clue what your onco was saying there. Can yiu explain?
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hi red -
i think my onco meant women survived from BC after chemo, it's either because chemo was very effective or it's because chemo put the ovaries to sleep which produce much less female hormones. IF it's the later case, the medical field just need to put the ovaries to sleep and we don't have to go thru harsh chemo. but it's just a theory.
from what i read in the alternative thread, some women are able to stay NED. so it seems it's logical.
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OK, I was just about to ask also June. That does make sense. And it makes a lot more sense to put the ovaries to sleep or have them removed than to put yourself thru the chemo, which is not that great for the rest of your body.
Red, you asked about some other alternative strategies, so I'll start with DIM, since that's what we're talking about here. It's a broccoli compound that is supposed to help balance your hormones to a healthier ratio since there are actually 3 main components to estrogen and some are good but others are not so good if out of balance. (I hope I'm saying this right as I'm quoting from memory!) DIM puts those in balance. Flax seeds are one of the best phytoestrogenic plants around and will usurp the receptors on ER+ tumors but won't feed them. I dip my finger into a little jar of them and just chew on them slowly and it keeps my mouth entertained better than gum and has broken my habit of chewing on the inside of my cheeks. Oh and of all things, blackstrap molasses is supposed to be one of the best home remedies to help with fibroids but I need to be more consistent. The little I've used has not thrown me out of ketosis yet and I actually like the taste--will help with blood count too.
Of course I told you about my ketogenic diet and ALA is supposed to help lower the blood sugar as well, and olive leaf extract. Both of these supplements will nourish the immune system and both will beat back tumors as well as the million other great things they do. Ubiquinol is thought to beat back tumors too but you need to take doses of at least 400 mg along with omega 3 oil to see anti-cancer benefit--I'm doing that. I'm taking nettles to nourish my blood and immune system. These are what I take in addition to the homeopathics and super vitamins that the nature doc gave me. One old fashioned remedy I've been trying is massaging my breasts with poke root oil and that may be helping. I plan to get some maitake mushroom and ginseng soon--both also great immune system builders. Oh and sulforaphane b/c that will actually kill stem cells and anyone taking chemo should be taking that as well.
So you all may be wondering if this is helping? I can't quite tell yet. My tumor was never a lump anyway--more of a thickened spot on my left breast. It does seem to show more when I look at it now, though when I feel it, it seems smaller. Since I've lost 15 lbs it could be that or maybe my eye is more trained to see it now. Or it really is bigger. My nipple was pointing due west there for awhile but it seems to be pointing more in the straight direction now. I talk to nature doc on Monday and will be asking some pointed questions about how we know when it's time for surgery. I'm almost 3 mo out from dx right now. One thing about natural cures is that you can't be in a hurry or freak out when it doesn't immediately go away--it's not growing and that's the main thing for now until I get this biological train (terrain lol) turned around. My best case scenario of course is that I'd never have to have surgery or treatments but I'm open to the idea that I probably will so hoping for the best and planning for the worst. Kind of, since the worst case scenario is that I'd have to do it all. Still though I think it will be better if I feel that I have some choice in the matter.
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pipers - thanks, love reading your regime. yes, i read a lot about DIM, if taken from just broccoli, it's like few pounds per day lol. personally i much prefer to do it that way than tamox but my alt doc said i "MUST" take tamxo bc of strong er/pr.
red - i think you can ask around for a naturopath doc as well. if he/she is a MD, i think your insurance will cover it. at sloan they offer integrative doc and i asked about the billing, they told me as long as it's a MD, i only need to pay copay. its def worth looking into. bc the doc will do a blood work on you then decide what you need.
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Oh gosh June, I'm strong ER/PR+ too so I"ll probably be under the same injunction. Well eat those flax seeds then. The Budwig protocol involves eating flax oil on cottage cheese and I can't imagine anything that sounds more unpleasant (linseed oil is made from flax) but it's supposed to work well and I would imagine that it would work best for hormone + cancers. My problem with that is I've reduced dairy quite a lot. I will ask my nature doc on Monday about tamoxifen, but he is putting me under the care of an onc that he works well with, so probably won't answer that.
Oh and Red I've been missing Jodi off here too but I keep seeing her on facebook so I know all is well.
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Hi Pipers and June. Jodi too if you're lurking. Please watch your intake of flax, soy and oil of oregano. All three are loaded to the gills with ER+ hormones. Not a good thing to add to a body with a cancer that lives to attach itself to just that very hormone.
Sadness today. My FIL passed away last night. He was a wonderful man and will be missed very much. At least he'll get to be with mom again.
Hugs'n'kisses
Deb
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piper - i think you should still ask your naturopath about taking the tamxo. the worst is a big fat no from him. you never know what they have in mind about tamxo.
red - sorry about your FIL, may he RIP.....(((hugs)))
i've been reading this book "what doctors might not tell you about BC". there's one section talked about the pharmaceutical needs the patent so they stopped using natural herbs to make medicine. that's why most med have side effects. they actually care more about how to make more bucks than saving lives.
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Update on holistic MD visit from Monday: First I had an appt with the biological dentist--a man I think I'm going to be seeing a lot of. They do CT scans of the jaw and can really get in there and see some of what's going on. My mouth is mess! I kind of knew this--have lost 8 teeth total: 4 due to orthodontia plus the wisdom teeth. I have a "silver" mercury filling in every molar, and several of them are coming loose. They actually get in and take pix of your teeth with a 35 mm camera --how novel. And yet I was able to see for myself that I have a couple of cracked teeth plus the loose pieces of filling just dying to fall out and get swallowed. Those were in addition to the panoramic x-ray.
Then I had my appt with "nature doc" as I call him and he ran me thru more tests and said that most everything (liver, kidneys, intestinal health) is much improved except for heavy metal toxicity and my dental health. He did a chelation test for heavy metals while I was there to see what comes out in my urine and I'll know more about that in a month or so. So, it looks like the dental thing is going to be very unpleasant for awhile and could get quite involved but the doc says there are 5 health problems that impact your health in a huge way and they are: 1. dental woes 2. parasites 3. food allergies 4. heavy metal toxicity and 5. poor diet and nutrition. We've got 2,3, and 5 taken care of, or soon will be, and the other 2 are to come but strangely I already feel better after just one chelation session and I see evidence every day that parasites were indeed a problem for me. His goal is to strengthen the immune system to fight this off. Tomorrow I have to do a very unpleasant detox--it's called a liver/gallbladder flush and I have to drink a 1/2 cup of olive oil and then shit green marbles. Can't wait! And on Valentine's Day!
So, for those who did not choose holistic healing--I'm not sure it's a lot more pleasant than the conventional route but I don't regret this one bit. I get nauseated a lot--I get tired. I go to bed earlier these days and swallow a handful of pills 3x/day. Not one thing goes into my mouth that won't advance healing--yummy things are a remote memory lol, but at least I look hawt with 16 lbs off and my skin looks great and my bowels have never felt better.
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piper - thanks for the update. i am very happy for you. i can't wait to meet my integrative doc bc i want to know how he can help me. oh i was reading on another thread this lady mentioned biofeedback scan, did your nature doc do a scan like that? she said it can detect cancer better than a pet scan. she's a stage 4 and has been NED for few years now.
are you going to switch to another kind of filling? what did your doc recommend? i am curious to know. oh drinking 1/2 cup of olive oil sounds pretty challenging. pls tell us how that goes.
16 pounds is quite a lot. congrats!!it must be very encouraging with the glowing skin.
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June, my doc uses a dx technique called acupuncture meridian assessment. He uses an ohm meter and a probe that he sets on my skin at acupuncture points and gets a reading of what's going on in the corresponding organ at that time. It was easy for me to see that the dental stuff was giving a very low energy reading and he did a lot of testing in that area. It is not precise and can't always pinpoint the exact spot--only shows that something is going on in my mouth and it's most likely around the site of an old wisdom tooth extraction, but he had to send me to the dentist for a CT scan to figure out just exactly what is going on and even then it was hard to tell. It sounds like they don't know what they're doing maybe except that my conventional dentist told me that everything is fine and that was when I clearly knew that it wasn't and I can see for myself that I have crumbling fillings and one is over the exact spot where I've had pain for 7 years. The dentist said we'll tackle the easiest stuff first and the stuff that will give us the most bang for our buck and I'm all for that, but the fact is that I was planning on having all my fillings replaced someday anyway and that will take a lot of work. So yes, not sure what kind yet but I've heard talk of composites. They're still not the best but better than mercury.
One thing that's interesting about all this is that my pastor, who is in his mid-eighties, has had tongue cancer at least twice and had to have some cut off. Someone told him to get his fillings replaced and he did and never got cancer of any kind again, though he has kidney disease now and that may be from irresponsible filling replacement--they didn't do anything to protect him when they did the removal I know. This is the same man who had a tumor on his pancreas and got anointed and went back for another test and the tumor was gone. Anointing is a ceremony they do in our church for healing, travel mercies, or severe emotional distress.
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Happy Valentine's day ladies. Hope it was nice for you or that you made it nice for you!
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June haven't had time to look for that flax reference, but I think my friend put it well when she said the following:
Flax has a "natural" ER element. "Natural" does not necessarily mean good. If you eat flax you are increasing your ER levels. Just like with anything else, like edamame, for example. Will it kill you? Will it cause you to recur? Who knows. Do I add it to my system. No. I get enough ER crap from everything else so why add to my ER load??
I'll look for that reference this weekend.
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piper - thanks for sharing about the pastor, i will def be even more careful about my dental health. i didn't know silver is bad though. what should we use then? i've heard gold supposed to be better than silver...
red - thanks for sharing about the flax. i also red coconut oil is good to block hormones. i bought a small bottle to try. i tried to spread it on the bread...
didn't like it at all. i'll try to use it for something else. ppl use it for their coffee but i don't usually drink coffee. so....
i didn't do much on V-day. by myself. it's quite comfortable. went out for a movie w my friend on saturday. robocop...it's quite entertaining.
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Hi June, two other things I was warned about were soy products and oregano oil. Both increase your ER levels. Lecture over. Lol. How have you been?
Pipers are you going to get your silver fillings replaced with composite ones? In addition to being non-metallic, they're prettier. Lol. At one point they were the standard in Canada. Then insurance companies stopped covering them, so if you want them you have to pay the difference. Will you have to pay for them or are you covered?
Have a nice evening.
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Hey Red, I missed you. I miss Jodi from this thread but keeping an eye on her. I kind of fell apart this weekend. Went to the dance last night and had a great time and then got really emotional afterwards--the worst time I've had since I first learned of my dx--fortunately I had a good friend there to catch me. I 90% trust that I'm doing the right thing here but there are dark moments and I suspect that would be so no matter what method of healing I'd chosen.
Yes, have heard this about flax but there is lots of confusion and for now my holistic doc recommends it b/c it binds to tumor receptor sites and prevents the harmful estrogen in your body from latching on. Since the plant estrogen is weaker, it is less likely to feed the tumor. I did not know this about oil of oregano and good thing you told me b/c I keep a small bottle available for infections and such. Used it on a very infected finger of one of my students the other day and the next day his finger was much better. They cannot afford to go to a doc so I felt good about being able to help him.
June, when I said silver fillings, what I was really referring to is mercury fillings--they are about 50% mercury and look silver. From wiki: "A 2003 monograph on mercury toxicity from the World Health Organization concluded that: Studies on humans and animals have demonstrated that dental amalgam contributes significantly to mercury body burden in humans with amalgam fillings."
The reason you don't see more problems is that some people are able to detox mercury from their bodies with relative ease, but I suspect I'm not one of them. When I was about 10 or 11 we broke a thermometer and played for over an hour with the mercury bubbles--it was great fun. But when I try hard to remember, that is about the time I began to have some really dangerous and almost fatal allergy symptoms and these have gone on for years--I've ended up in an ER more than once. And yes Red, I will have to pay for at least part of this, but I suspect that the crumbling fillings will be paid by insurance--you have to prove that there is a need for replacement.
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Hey ladies, my niece is following the 'Undiet' and I thought aspects of it could be incorporated into what you are doing. Here's the link: http://meghantelpner.com/books/undiet-meghan-telpner/?utm_source=Meghan%27s+Community+Of+Fun&utm_campaign=b2a54b1bf3-Sign+Up+Email+1&utm_medium=email&utm_term=0_061a10b407-b2a54b1bf3-30490577
Like you guys, and me, she has a philosophy about living well and not being concerned with what is popular or what happened yesterday and what will happen tomorrow. Give it a view and if you like the ideas, maybe go to her blog for more info.
Talk to you later.
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red - thanks for sharing. i took a look, very interesting and i will check more often for receipts.
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I'll have a look in a minute Red, but came on here to post this link: Lignans It's about flax and the Linus Pauling website has a lot of great info.
You gals are really good for me b/c you challenge me to look further and figure out what I missed. With so much info out there, it's really easy to miss something.
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OK so I had my appt with the dietician today. And I need to tell you that I was wrong about a couple things. Flax is er+ and will bond but the benefits are very good and worth the risk. The recommendation is no more than 2 tblsps daily of crushed flax. The reason for crushed is that flax seeds are pretty much like corn. They exit the body pretty much whole and do not give you the benefit of the omega3 etc.
Also on the subject of soy, another plant product that bonds. I am going to start eating soy. The rule is no more than 2 portions a day. Above that amount and the benefits don't outweigh the risks. I won't use that much but I think I'll try it a couple times a week, flax too. I'm just going to keep it minimal and hopefully look for other anti - oxidants and things high in omega 3.
O and first rad went well. Other than the tingling, I didn't feel a thing. :-)
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I'm glad to hear that the rad went well Red--it sounds so scary. I've read that astragalus, ginseng, and nettles are good supps to take during your rads. Astragalus will actually augment some of the treatment protocol.
On the flax--rather than buying the ground, I buy the seeds and chew on the little devils while driving or on the computer. They keep my mouth entertained and they have helped me completely break the habit of chewing on the inside of my mouth, which is great b/c I was starting to get extra wrinkles from that--was starting to look like a smoker. I'm glad your dietician is good with that too--so much is confusing about what we're doing.
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red - good luck on the rad!! how many do you need to do?
flax seeds are easily oxidized...so make sure you only ground the portion you are going to consume. read it from the alt thread.
have you guys heard of Dr. Max Gerson? he's the grandfather of holistic approach of treating chronic deceases, those coffee enemas and juicing were originally his ideas. i saw on netflix two movies, the gensor miracle, and the beautiful truth.
piper - did your nat doc mention anything about coffee enemas? i am curious but not brave enough to try it.
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June, no word about the coffee enemas, though I did wonder. They can be dangerous though if not done right. The other night I had to do a liver/gallbladder flush with drinking olive oil and all, and I was dreading it thinking I'd be up all night like a colon cleanse or something, but nothing much happened. I just hope it doesn't get bad this weekend at my weekend long dance with all my friends.
I found this on facebook the other day and have pinned it up on my mirror: "When things fall apart, consider the possibility that life knocked it down on purpose. Not to bully you, or to punish you, but to prompt you to build something that better suits your personality and your purpose. Sometimes things fall apart so better things can fall together." I'm going to live by that for the duration of this.
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piper - thanks for the quote, very true, i believe it.
i've been watching some documentaries on netflix and read about doctor gerson, that amalgam is the worst choice to fill our tooth cavities. after i did all those research, it just all makes sense that we need to detox and go organic, low fat/carb and high fiber. it's so difficult to live a proper life style in this "modern" society. best luck on getting those filling out and pls keep us posted.
there's a documentary about tapped water, and all the bottled water on the market (amercian brands) are municipal water, NOT those pure spring water they wanted us to believe. and it's free, so their profit is x00%. plus the toxic plastic bottle....OMG i cannot believe what kind of world we live in.
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