Wife had Breast Cancer, now she does not.

Mardibra

Agree to disagree....sounds good.  However, Im still interested in the sabotage that you claim the FDA did.  If thats true, I would like to see the evidence of that.  Unless of course you just disagree with the results of his protocol and are so convinced Gonzalez is the real deal that it must be sabotage?

new_direction

JOelleLee it sounds like you have really done your research well. It's a tough decision, it must be even tougher to turn down conventional treatment. I wouldnt call myself brave I just jumped right in without thinking. The way I saw it was that I only had ONE SHOT at doing it right. Im not trying to talk you into to something if you have already made your mind up. The procedures can be different where you live but tumor size > 20 mm, positive lymphnodes, age < 40/50 and even ILC if grade 2/3 all speak in favor of chemo individually. IM NOT TRYING TO MAKE YOU FEEL BAD - just want to make sure you have made your decision knowing this. Some dont respond well, if you happened to be one of those - you could just skip it after 2 or 3 rounds? your plan would still be possible.
Hope you take this the right way. Just hope the best for you.

Momine - thanks for the encouragement. I cant wait till that day. At the moment Im fighting to keep seing things from a positive angle.

Momine

New, I was seriously pissed off for a while after finishing treatment, lol. It does suck. But I have found that just plugging away as best you can really does help you recover. I hope you feel better soon. If you are at "Riget" see if they still have some exercise programs. My mother participated in one and found it very helpful.

vespersparrow

Joellelee, thanks for speaking up here about all of the alternative-med bashing going on, YOU ARE NOT ALONE (although maybe it seems that way).  Fact is most of us alternative-med users (aka "alties") have been driven away by the constant harrassment of naysayers who feel compelled to save us "for our own good" "because we don't know better" and we've been "deceived by false hope" because "we haven't done our research" etc. ad nauseum.  Gee if it was that simple why does anyone who follows the Standard of Care die anymore?  (Oh wait, is it acceptable to die if "you do all the right things but it just doesn't work", but trying alt med isn't a righteous enough death or something like that?)  But yeah, if you're not getting a lot of backup it is because they gave us our own forum, rounded us up into one place, and then pecked us all off the boards one by one.  The naysayers can't seem to stay the h@ll away, it's like a trainwreck to them.  I've just read through this thread and I'm saddened and shocked at how much discouragement is being peddled.  Live and let live, people!

And fyi, chemo, i.e. damaging one's immune system, is often not compatible with many alternative strategies and can be the reason why they fail.   "just trying a few rounds" isn't a good idea if you plan to use any immune-boosting strategies afterwards.  Just sayin'... 

ok, outahere...

peace

new_direction

i feel like its very hard to do research - but i feel like the RIGHT answers are out there. I didnt post because i feel like i know better. Im often in doubt and would like if someone tried to help. We are here to help eachother after all, at least we have that in common whatever subdivisions some might think exist here. If not helpful, im sorry, not my intention.
The communication on this forum is sometimes very interesting. The topic is packed with emotions. Its strange why different answers seldom can exist at the same time...

jojo68

Vesper! Thanks so much for posting!!! Being the minority and painstakingly finding ones own path, without following the norm takes huge amounts of courage and strength! I agree with all ya said, Sista!

exbrnxgrl

I shouldn't get into this, as my prior experience has not been pleasant, but...

People become very passionate about their beliefs. Add to that the emotional upheaval that a bc diagnosis brings plus the inability of an online forum to convey tone, intent and visual cues that you would get in a face to face conversation. Doesn't always bring out the best in us and as those emotions escalate, the conversation sometimes deteriorates. I do wish that whatever camp we fall into, we could be more civil and steer clear of inflammatory language. One thing I do feel strongly about is letting people make up their own minds. We are all reasonably intelligent adults and don't need to be told what to do, for our own good, or to be protected from "something". If you want to find out the pros/cons of conventional medicine, great. If you want to find out the pros/cons of alternative medicine, great. Information never hurt anyone and what an individual does with that information is up to them. I don't know if there are any "right" answers, just what you decide is right for you.

Caryn

jojo68

I agree, Caryn!

gemini4

Extreme_Fashion, please keep your spam out of our forum.

Mardibra

Regarding FDA sabotage....can you provide an answer?  Seems like you think you are being attacked...not so, at least not from me.  However, you throw out the word sabotage but refuse to back it up with facts.  When any alternative minded gal is asked to back up an inflamatory claim like "sabotage" the answer is generally silence.  However, silence is consent in my book.  Thanks for agreeing.

NattyOnFrostyLake

Yes, New Direction, we are here to help our fellow alternative seekers, to support them and encourage them. There is so much to learn. Years and years of information to explore.

There is no point in responding to those who come here full of insecurity about their mainstream choices.

Let's build on what we're interested in. I have gone back to taking melatonin as part of my regimen. The alt doc is very pro melatonin also low dose naltrexone (LDN). I've been taking it several months. There is even a group of LDN takers for cancer patients.

NattyOnFrostyLake

Jollelee, I'm impressed you know about the Liposomal C. I even feel the boost from it. The manufacturer recommended not taking it too late in the day because it boosts the adrenals. I don't take CoQ10 or iodine late in the day either or I'm too alert. 

vespersparrow

You're welcome Joellelee, I'm glad I helped a bit. Bullying has been an ongoing problem in this forum for as long a I've been reading it (a few years now) and I felt very bugged-out by it this morning.

New Direction, I hope you realize my rant was in no way directed at you. In fact you posted this insightful comment that really resonates and I think explains a lot of stupid human behaviors around here:

Finding out conventional treatment is not right or optimal could be frightening, we all want to live so much, what if what ive done is not good enough, what should I do then, what are the right answers. Dont know if thats the case, but being threathened by this thought would be understandable.

Am totally on-board with Caryn and NattyGroves, on with the learning!

new_direction

vespersparrow i was drawn by your energy, although i nearly wrote "angry bird" to refer to you - only meant in a funny way but was afraid it would be mis-interpreted.
Im so overwhelmed by all the information, dont know where to start. It feels like there are 1000s of ways to a "cure". Im looking into energy healing at the moment. Does anyone know anything about that? any advice where to start?

jojo68

New Direction et al interested...Join the Yahoo groups...cancercured and Breastcancerthinktank and the iodine groups on yahoo!  Sooo much wonderful info and personal insight and latest research!  There are a few alternative doctors who are on there as well and answer all of our questions and give free advice...invaluable!  There is also a lady on either breastcancerthinktank or cancercured who does the energy healing and has put her breast cancer into remission.  She also gets a bodyscan done and in controlling her gluten intolerance and parasites has really controlled her cancer well...amazing.

Natty....There is also a DIYlipo group on Yahoo with all of the lastest!  I am doing the iodine protocol, so I do the Lipo C and I LOVE my ancient minerals magnesium/msm spray and footbaths!  I know the magnesium is working as it totally has stopped my heart palps and has calmed me!

Vesper, Natty...thanks so much for posting!  I am choosing to not repond to the naysayers as none of my studies satisfy them anyways and I am done trying to prove myself.  Too much wasted energy that I would rather spend exchanging info with beautiful/open-minded ladies such as yourself!!!!

jojo68

@nattygroves...Is that LDN forum/thread on this website?  Would I need a prescription for the LDN?  Also, do you take any herbal mush supplements?  i am concerned with some of them being harmful for estrogen positive breast cancers?  I take the Turkey tail coriolus and so far it seems this one is safe and very effective?  I also take the melatonin, but have read the timed release is best?  Do you mind me asking which brand you take and how much?  Also, any ladies here taking metformin?

gemini4

Re melatonin and metformin --



I'm still doing rads. Do plan to go on tamoxifen but want to ask my MO if I can also take metformin. I don't think I'm on the diabetes spectrum, but everything I've read about metformin sounds like it's worth pursuing and apparently not unsafe for non diabetics to take.



Re melatonin -- I don't take the supplement now but I've read that sleeping with light blocked induces the body's natural melatonin production. I wear a sleeping mask at night -- find it definitely helps me sleep better -- and maybe I'm making melatonin as well?

jojo68

I am not diabetic, I don't think, either...I am looking forward to my family doc visit where I can discuss metformin...I am so excited as I have read so many positive benefits!!!!

I sleep with a sleep mask as well, as well as take the melatonin...not sure if our bodies would make enough naturally?

jojo68

Any ladies here try hyperthermia?  I have heard wonderful news about Euromed in Arizona...One lady I met has shrunk her large tumor and lowered her numbers at Euromed in one month.  I know you can buy a home hyperthermia bio mat...not sure if it is as effective?  Also, heard insurance may cover hyperthermia?

Anonymous

I am interested in hyperthermia. The NCBI includes it as a possible tx as does the ACS. From what I know, there are three different kinds: local, regional, and whole body. I am wondering if I'm kind of txing myself anyway, since I go to bikram yoga 3x a week. The studio is heated to 105 degrees and 60% humidity, and I'm in there for 90" each session.  I know I'm freaking hot during my practice for a time afterwards. Anyway, I know it can't hurt me! I love it.

jojo68

Hi Claire!  I am not sure about the yoga/?  I am not that knowledgeable in hyperthermia either...just now looking into it!

Anonymous

@Joellee--here's a quote from the conclusion of what the NCBI says, seems to be most useful when used in conjunction with chemo.

"The goal of adding hyperthermia to radiotherapy and/or chemotherapy is to increase response rates, and hopefully local control and disease-free survival. It has a strong theoretical basis, and has been shown to have benefit in the setting of chest wall recurrences of breast cancer. As preoperative chemotherapy has been shown to improve outcomes in the setting of LABC, it seems intuitive to intensify preoperative therapy so as to further improve these outcomes. The addition of HT to preoperative chemoradiotherapy has been shown to increase cCR and pCR rates more so than chemotherapy alone in small series and is similar to some reports of concurrent chemoradiation."  Jan 2011.

Here's the whole link.  http://www.ncbi.nlm.nih.gov/pmc/articles/PMC2949291/

Anonymous

And one to the ACS's link about heat therapy.

http://www.cancer.org/treatment/treatmentsandsideeffects/complementaryandalternativemedicine/manualhealingandphysicaltouch/heat-therapy

I always thought it sounded promising.

jojo68

It does look very promising!  As you probably know, I will not do chemo...so, I am looking into it to add to my protocols to help keep circulating tumor cells at bay...I am thinking the metformin will help with this also.  There is a doctor on earthclinic.com who says that as long as we can keep our sugar levels at 90 and below, we have an awesome chance of long term survival...hard to do, though.

Anonymous

J, I think there are studies out there that are evaluating hyperthermia alone....you'll just have to dig and evaluate for credibility. 

I have read about metformin in other places too.  Good luck to you! I hope we are all here for years to come.

jojo68

Thanks for the links, Claire!  Hope you come back here often...and, bring your research!  xxoo

new_direction

I thought the reichi mushroom sounded promising but there are some studies that show it might have estrogenic effects.
I take artemisinin (but not during radiation) - it's been used as a treatment for malaria. It is specific to iron-containing cells , thereby cancer cells.
About melatonin I think it sounds promising too, but Ive just been sceptical as to add something that interferes with our natural systems. I thought: will our bodys natural production decline when we "substitute" it? Instead ive been looking at food that help increase the natural production (just as an example heres a link http://www.livestrong.com/article/458667-foods-that-increase-melatonin/)
I didnt know about naltrexon so thanks for that info.

Momine

New, thanks for the link. In the sidebar, they also have an article on walnuts and melatonin. Apparently walnuts are very beneficial in all kinds of ways, including raising melatonin levels. Like you, I have become slightly wary of supplements for the same reasons you mention.

It has also struck me that perhaps we do not need the equivalent of 2-3 pounds of broccoli a day (as one example), but rather a steady, moderate supply of all kinds of nutrients. In the traditional Danish diet, for example, people ate a piece of rye bread with herring almost every single day. They ate other stuff too, but that one piece of herring on rye was a stable. Likewise, they ate cabbage on a very regular basis, again not in huge quantities, but all the time.

So, I try to incorporate cabbages, onions and colorful veggies in my daily diet, as well as nuts, putting a small handful of nuts in my morning muesli and eating nuts for an afternoon snack.

jojo68

Do you need a prescription for artemisinin?

new_direction

Momine that sounds like a good "plan". At the moment im off the ketogenic diet and think i will just return to eating low/no sugar.
Joellelee - you dont. Just make sure to go for the concentrated stuff, not just the chinese wormwood(artemisia annua). There are research done by someone named Singh if you want to look into it. I have found some "protocols" (unofficial i think) for dogs where theres been quite a success rate i think. The active ingredients are either artemisinin, artemether or artesunate (different halflives and polarity - and cant remember which one passes the brain barrier but artemisinin seemed to be used alone in some cases so thats what i went for).