ATTN: natural therapies ONLY.

inga6060

This is for ones who are only interested in alternative treatments.  If you are not interested, please don't post here.  Thank ylu

lightandwind

I hope the ladies respect your wishes Inga. I'm here for support anytime.

inga6060

Thanks lightandwind. I will hope for the best.

exbrnxgrl

Is questioning allowed? I ask this quite sincerely since I am always hopeful, but I probably have less blind faith in alt tx than some who will post here. I'm looking for more than anecdotes.

inga6060

Don't take this the wrong way xbrnxgirl, but not your kind of questions.  If you really were interesred in alt.  You would do the research yourself.  If you are skeptical, and that's ok, there will never be a study large enough or performed correctly for you.  Most natural cures don't have the funding that the pharmaceutical companies have.  It doesn't discount them by any means.  This forum are for people who truly want feedback and who are willing to do their own legwork.  Don't mean to offend you in anyway, that's just how i see it.

exbrnxgrl

Thanks, Inga. I guess I'll keep away then. I do admit that I've had this experience before on the alt forum. A poster once told those of us who asked questions to "do our own heavy lifting". I've kept hoping that would change, as I'm ever hopeful, but I suppose it's not to be. No one has ever told me I was unwelcome to ask any type of question on other forums on bco or hesitated to share info. That's where I keep stumbling with alternative tx. Good luck to you and for as much as it saddens me, I appreciate your honesty.

lightandwind

Right on Inga.

mmtagirl

Exbrxgirl, I have to say I agree with Inga and L&W. Having watched from afar the past several days the fireworks created on the several threads I don't see how this thread on alternative will be any different if the same posters bring forward the same objections.  While I think your questions have been thoughtful and with the intent of learning, so many others have not.  I feel for those that are true to their alternative beliefs on this forum.  They really don't get much of a chance to share in a free and respectful way.  

As you can see from my profile, I went the conventional route and don't for one minute regret my decision.  However, I won't comment on my personal belief system on this forum any more than I would on the stage IV threads.  It is out of respect for the women on that thread.  I think the women of BCO should give the alternative treatment women the same consideration.  Exbrxgirl, I have read many of your posts since joining in January, so please don't be offended by my post.   You have given me some great insight for which I will be forever grateful as have others on this site.  Your intentions may be honorable, but, I am not so sure that if your questions are related to questioning the statistics, trials, evidence, etc of natural vs conventional therapies how the dialogue that digressed on the other threads will improve here.  I think that is the intention of Inga and others and they deserve a spot for dialogue, too. IMHO. 

exbrnxgrl

Thanks, mmtagirl,

My questions relate to everything! I question everything that I don't fully understand, whether it's car repairs or medicine. My background as a teacher and proponent of critical thinking, as well as my personality make me lean that way. It's not just here on bco, but despite truly wanting to understand alt tx, I always run into a wall for questioning too deeply. Can't blame a girl for trying. Hmm.. I think I hear my exit music.

AlaskaAngel

This suggestion may be elementary for some, but because I believe it is worth considering, I will put it here.

It isn't easy to figure out which foods have which kind of fat or how to measure amount of the fat that is in any food, but I would suggest looking into balancing the type of fats one eats - omega 3's with omega 6's -- including whatever fish oil pills one might be taking.

I freely admit I don't entirely understand the chemistry of this myself, and I have a harder time yet trying to explain it, so this is just a suggestion for one to look into and consider.

The fats consumed in the average American diet are overwhelmingly omega-6's (animal fats). People who favor a diet with lots of meat get upset with the idea that fats are "bad".  It isn't that animal fats are "bad" per se. Animal fats that are organic and are balanced in the diet with fats from plants (like olive oil) provide protection because that results in different effects in the body on a chemical basis metabolically. 

Some people also misinterpret this idea by thinking that switching the diet to entirely omega-3's (non-animal fats) would make sense. As I understand the idea, it is important to balance 3's with 6's.

I wish I could be more specific but I will leave that up to the readers to look into it to evaluate it.

juneping

i wholeheartedly agreed with mmtagirl. though i am more on a route of complementary tx but i want to learn more about the alternative tx. i just want to come here to learn and if i see something i'll do more research on my own. this is not a place to pick a fight and flush out some negative feelings towards alternative tx. 

yes chemo saved your life and so was the alt tx..that's why we're here typing on the internet. lets keep it strictly alt tx. may be those posters could create a thread about how ___ of alt tx in the chemo subforum to talk sh*t about alt tx. i am sure most of the alt girls won't go there to pick a fight.

inga6060

Hey, I'm sticking to topic.  I recently read story on protocel thread,  of a women, sounds as bad of condition as me.  I realized I have all her symptoms of killing the cancer cells.  I worried about some.  I am so happy, even tho I have some suffering going.  A lot of trips to bathroom, which you want.  Natural does work.  That story, forget her name now, and me are living proof.  I take one day at a time.  I can't tell you how long I will live.  But no one knows that.  You could be hit by a bus tomorrow.  

kcshreve

I have been learning a lot through watching YouTube interviews on Gonzales in NYC's input on cancer treatment, the Gerson therapy, and www.chrisbeatcancer.com.  I feel like a student yet again, but I'm seeing trends within this community that make sense:  choosing nutrient-dense foods, specific detoxes, and lifestyle changes.  What amazes me is that these therapies have any good results at all, since so many of their patients are coming AFTER doing conventional and having few options left.  in spite of it all, some do make good progress.  It makes me wonder what results they'd have if their patients were not in such a severe condition.

pipers_dream

Count me in.  

Lily55

I had surgery, which I regret as it was a brutal modified radical mastectomy that took a lot of tissue, lining to chest and some chest muscle too as well as nodes. I refused chemo,had sono photo dynamic therapy, but then allowed myself to be bullied in to radiotherapy, which I seriously regret. I am now two years post radiotherapy, and have been taking a range of naturopath prescribed supplements since then. I do still take an aromastase inhibitor as naturopath (who is also medically qualified) insists there is nothing else proven to be as effective in highly hormone positive cancer. 

More natural treatments do not attract funding as there is no money to be made, but the fact that drug companies are investing millions in trying to isolate active ingredients in some of these substances so they can patent them as drugs indicates to me there is real evidence for some of them. I3C is one of these, problem is drug companies take a reductionist approach, whereas natural remedies need lots of co factors! 

I have added this thread to my favourites.  

abigail48

& they do disgusting things to natural plants to make them suitable for infusions.  fetal calf cells anyone?  then they take them out.  I don't get it

juneping

lily - we are both stage 3 and you said you regretted the surgery. how would you have gong thru the process if you had the knowledge you have now? 

for me, i would probably not remove that many nodes but i still would remove the tumor.

Lily55

I would have started on anti hormonals  immediately and gone straight to holistic diet....then reviewed whether a lumpectomy or at least a less radical mx would be enough after three months or so.  I had no choice over number of nodes removed at all

exbrnxgrl

Lily,

I can't remember if you live in the US or not, but radical or modified radical mx, where muscle is taken, is rarely done here anymore, though there are circumstances that may warrant it. Nodes are a tricky thing. The sentinel nodes are easier to see because of the dye. Beyond that, nodes are encased in a kind of tissue wrap, and the whole clump is removed (if removal needs to go beyond sentinel nodes. Until the tissue is removed during pathology, the exact number is not known. Hindsight is a tricky thing. Sometimes it can help us or perhaps others, but it's a tough place to dwell since the past can never be undone.

juneping

lily - thanks for sharing. i had a simple mx but 2/3 of my lymph nodes were removed...and i checked the definition of radical mx...it's sort of what i had. i really don't get the whole concept of removing the lymph nodes, the only purpose is to find out how far the cancer went but the ramification is just too severe. 

but no matter what financially i can not afford those alternative treatments. i called a few places and it's usually 5G...it's quite pathetic that it cost a fortune if i want a less invasive and less expensive tx for my body.

exbrnxgrl

June,

So sorry that you had to go through a radical mx. Taking the pectoral muscles is definitely tough going. Forgive me for being surprised , but it is not common unless medically necessary. Had your bc invaded under the muscle?  I hope your recovery has gone well, in terms of range of motion, arm strength etc.

Caryn

exbrnxgrl

June,

Sorry, just re-read your post, and now I'm confusing myself  A simple mx is generally the removal of the breast, nipple and all breast skin and tissue (unless skin/nipple sparing). A modified radical includes some to as many as all nodes. Radical involves the removal of pectoral muscles and is the most invasive and disfiguring. It's also possible to have some muscle removed. I've had a long busy day. Best not for me to think too much right now.

juneping

exb - i think i had the modified radical mx...but when i checked my path report, it says simple....O_o

i don't have lymphadema yet...but i have been having this tightness at my arm pit and it slowly went down to my elbow, wrist and the back of my hand now. it's a little swollen and i don't know if its the beginning of the lymphadema.

exbrnxgrl

June,

I have very mild LE. Try to nip it in the bud. Have you seen a pt who specializes in LE? This helped and she taught me manual lymphatic drainage (MLD). I also have a sleeve and gauntlet which I wear when flying or when it bothers me. Drink lots of water, raise your arm above your heart and practice deep breathing. All of these things have helped me manage it and I haven't had a major flare.

Moderators

Juneping, re the possible LE, you may find some insight and info in the Kicking LE's butt!! Exercise & Self Care Log Topic. It is easier to take action early before it becomes painful or more swollen. We hope it is only temporary swelling.

The Mods

juneping

thank you ladies for your advice. Told my BS and she asked me to come in right away. I'll see her tomorrow....

Anonymous

june, I have LE and it's definitely something that can't be ignored and as the Mods have said there are things you can do as a preventative. There's lots of resource material in the LE forum. I would go to someone qualified in Lymphedema as the swelling  you describe does sound quite suspect. I hope it's not LE.

pipers_dream

I got in touch with a woman last night who is doing all holistic for her BC and she is five years out and still feeling great.  The discouraging thing about it though is that she still has BC and still has to do all the juicing and other things to take care of it.  Her treatment plan is similar to mine since we go to the same doctor.   For those who are exploring alternative, you should probably know that you may not be able to throw off the tumor this way but OTOH, you could also live another 23 years with that same tumor.  Mine has not grown and hasn't shrunk either so I may be about the same way.  It is discouraging but not the end of the world and this would not work for the women who want that thing out now.  I guess I never really did feel that way so it was easier to postpone surgery.  The two of us are starting our own support group b/c it's hard to find support in a group of folks who are mainly doing conventional--not that they don't care, but you can't really compare notes about chemo and all and they all think I'm going to die, which is not very supportive.  Then if holistic works for me, they will feel bad that they went thru all the conventional, so I'd just rather not.  This is just as emotionally stressful as conventional therapy, but in much different ways and I worry also that if I don't make it my kids will think I didn't try hard enough.    

Lily55

piper dream, can i join your group please? I refused chemo but did have surgery. 

Natural approaches will be slower as your body has to regain the upper hand and that takes time in immune system terms. Also to destroy existing tumours requires a lot more frim your body

pipers_dream

Well you know Lily, we were talking about meeting in St Louis, but we will probably email a lot too and you would be welcome to join that.  I also met a lady in Canada this summer who did mostly holistic except for surgery and she might want to come too.  It's sad to say, but I sometimes feel that I can't be genuine on here b/c of the naysayers and those who study the studies and then talk down to us.  I am all for scientific research and take that into account, but I'm not willing to throw out the 2000 years or more of research that came before us and just b/c they didn't use the rigorous scientific method used today.  Moderns often are quite arrogant about those in the past but if something worked for 2000 years then I might trust it a lot more than the new drug that came on the market, no matter how well it was put thru its paces.  

You are quite right about the natural processes being slower.  I'm being patient but lord I am so stressed out today.  

geewhiz

Pipers Dream, sorry you are having a bad day. I hope tomorrow is better! 

Your comment reminds me of something said to me by one of my holistic docs...I asked what kind of research there was to support Chinese Accupuncture, and he said "You know, have you ever thought if something has worked for thousands of years to successfully treat people, why would they need to study whether or not it worked?".  

I loved it : )