Survivors who have used only alternative treatments
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apple, thanks for the link. how much do you take daily? i couldn't find recommendations on dosage.
sigh....Wornoutmom, I think this thread, sadly, is volatile enough without endless hyperanalysis of each other's words. It seems as if many gals are trying to keep to the big picture and keep the mood supportive and informative.
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i mix Black pepper and turmeric in a jar.
i eat a tspoon a day in water or use it in cooking. elmcity
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I don't really understand why this thread goes on and on...
Herceptin alone costs the state circa £ 1500 per infusion. If anybody doesn't want it... Let someone who really needs and wants it have it....
I for one feel very lucky and privileged to have access to such amazing treatment...0 -
apple,
way to go.. we also have started mixing blackpepper and olive oil to our turmeric (based on WOMs posts).. we also bought a jar of aloe vera juice (which has emodin as natural substance)..
about the article from AMC-- it seems it was written in 2008.. there are more studies done on turmeric/curcumin.. and not only for early stage cancer..the latest study was conducted for advanced pancreatic cancer...
please read website of Natural Medicine Journal and search for the interview conducted by Karolyn Gazella on Pioneering Biochemis Bharat B. Aggarwal of the MD Anderson Cancer Center...apparently he is also an endocrinologist..
there is also more comprehensive information from this site:
http:\\curcuminresearch.org
it includes the dosages of curcumin used for each trial on different types of cancer..
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elmcity
go to http://curcuminresearch.org
the recommended dosages are documented there..by Aggarwal himself
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mackers - here in Australia, it costs the government $75,000 - I too feel priviledged.
Nanay - your mother is very far from being a survivor and so am I. When I said it's interesting no one has come forward I meant very long term survival. I think it would be very rare for someone to forgo chemo and herceptin given the prognosis of HER2+ve bc.
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Yep, WOM, I picked up on that too, just to let you know. I chose not to address it. It simply makes me tired so I took the high road.
Unfortunately, it seems that whenever anyone has success with alternatives, there will be those who say, "Well, it probably wasn't cancer at all" or something like lago pointed out...that the reason I have NED is because I'm node negative, not necessarily because of anything I am doing. People all over these boards warn us about Her2+ and how volatile it is yet if any kind of success is achieved with alternatives, it's pointed out that, if node negative, HER2+ is not so bad after all.
I am a long way from being labeled a survivor and as I said, I will never use that term to refer to myself but I am convinced I am doing something right. Only time will tell...for all of us.
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suepen,
I also have never said my mother is a survivor, even if she surpasses the 5 year mark. however, I still believe that she is doing something right.. not possibly all of it.. but she is doing something right.. my eyes, heart and mind are still open to influence on the subject about Herceptin for Her2 positive.. but I have reason to believe that chemo is not doing anything at all for Her2positive women..
i maybe wrong,. I maybe right.. again.. am still open to influence..
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hi impositive,
I agree being Her2 negative does not mean you are far better or worse than Her2 postiive women, it just meant they do not know yet, what receptors, proteins or factors are causing your cancer cells to multiply and grow..thus they do know what other conventional treatment to give you other than chemo/RX and surgery.
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Elmcity I was pointing out how language being used can be interperted as there has been much talk about no one attacking/disrespecting the alternative method as if there is no cause for people who mentioning alternative to feel they are not being supported. There is a tone of you are wrong and irrational and all data regarding alternative is useless which leads to defense and why I have had several emails stating I just don't want to get into it with anyone on this board. I think this attitude is exactly why we are not progressing in finding the cure. If we got everyone together we could battle this demon from all sides. Chosing words can really help bridge this gap as when anyone feels attacked it will lead to more division which only hurts us all.
Alternatives again can not fund thir own studies as they have countless loop holes to jump through due to laws put against them. How do you study curing cancer with alternatives if it is illegal to treat cancer with anything but chemo and even if the person wants to the doctor risks being accused of promoting it. Read the story on the woman with Essiac she had several doctors come and study her work and promoted it. The government stepped in and wanted to arrest her dispite all that had seen her beneficial work including MD's. Out of concern for her family she backed down out of publically trying to get approval to help others.
Studies done by a financially vested party will always be skewed no matter what side you are on. This should be concerning to all of us and we should want an outside uninvested party reviewing all the data if we want unbiased data. Perhaps a panel of muliple people. Lack of money to fund research hurts us all not just alternatives. The movie I mentioned earlier shows how a cure can be out there but due to lack of funding just sits on someones desk. That movie was about a medicine not alternative. It woke me us to the sad fact medicine is a business. After this I researched Herceptin and found medical talk about a pill form of herceptin and onc's being less apt to perscribe as IV forms have a higher profit. This was a non alternative site and I had no idea an IV had more profit than pill form as honestly I never thought about the profit side.
On survivors I have even found one person who has lived with their lump for 16 years without doing any conventional. My guess is that it is in situ as obviously it is not tested. My mom continues to be told her cure is not valid. How many people are proud to be clean 1, 2, 15, 20 years and just imagine if someone told you your treatment had no part in it? It is very unfair. In BC a five year survivor is praised, as should be, and the treatment is never questioned but if you make it with any alternative you got lucky there is never success. Thus robbing the person of their right to feel good about their choice. Sad part is there is some really scientific alternative stuff not just herbs. But anything outside the status quo is just pushed aside as insugnifiacant. .
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hi WOM,
finally! we are on the thread at the same time!
by the way, read this
http://www.drkelley.com/CANLIVER55.html
I guess I am safe being based in Singapore.. no one will be out to get me-- I hope.. I really hope that our discussions here could help somehow to find the cure.. not that I am wishing acknowledgement or proving that I am right for supporting my mother.. but so that everyone can be helped...
I am really hoping that everyone calm down and be supportive of each other's opinion..
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" How many people are proud to be clean 1, 2, 15, 20 years and just imagine if someone told you your treatment had no part in it?"
When I first met with my onc I asked her how do we know this treatment is going to work. She said we don't. She also showed me that 40% with my stats will be alive in 10 years without any further treatment past surgery. She came right out and said "If we knew who those 40 were we wouldn't be treating them."
Alternative or standard, we will never really know if those of us who do beat this disease really needed any kind treatment or even lifestyle change. Who knows but stress might be the main trigger for cancer growth and treatment in the future include stress reducing activities.
I read more women here talking about being in really bad work situations or relationships. Who knows?
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OK I'm out of here. I can't believe I try to support and congratulate someone on her success and then get slammed because of misinterpretation. I'm sure if someone who was doing alternative said the same thing you wouldn't take it that way. As usual this has turned into an us versus the, all or nothing debate. You are only interested in one view so I'm out of here.
Talk about not trying to get along.
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Impositive, WOM and Nanay,
Isn't the point of the super secret alternative forum (the address of which is only available to selected and approved posters) to keep all kinds of naysayers out, so you won't have to deal with any these pesky contradicting views on BCO that you don't like? Seems like you feel like it's too hard to digest comments that might not perhaps jive with your own views of breast cancer treatment, and if you want to be at peace and have no dissenting discussions, then perhaps your super secret forum would offer you more protection from any wording that might be perceived as attacks.
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i kind of think of it this way.. Cancer is what it is. Sometime fast moving, sometimes not. I was a super athlete, who ate and drank the right things. I did have my children very late in life and did have several miscarriages.
Obviously,'alternative' research has found out many things work.. broccoli, strawberries, turmeric.. super healthy foods that everyone should embrace. I am a bit leary of supplements myself, I do take Vitamin D, fish oil tho i eat canned tuna often. It probably is full of mercury.. who knows? My SIL, may her soul rest in peace, avoided chemo initially and told me to definitely do chemo late in her cancer battle. She turned stage 4 and had embraced many natural methods for years. She did do chemo her last 4 years and survived with cancer for at least 10 years.. (I don't know what her staging was at the beginning.. certainly not 4 tho). I was very late stage (probably 4) at my onset... and we had different types of cancer. IDC (me) and lobular
I certainly am not into the arguing thing.. I don't see sides in this. What's up with that? I certainly am not going to argue that 'my way' is right being stage 4. .. and hopefully I'll never call anyone stupid or judge them.
this disease sucks. I don't like to think about what my kids are going to do. I don't usually post in the alternative forum. Actually I think it is depressing if I post anywhere. My status is not very encouraging, is it? I really care about your decision WOM.. that's all. I hope you are ok. that would be wonderful I know that chemo, radiation etc. is pretty tough.
Anyway, I donated all the supplements that she had bought to a cancer support group. Everyone was delighted to see so many bottles.
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I have read many of lago's posts and I do not believe she was trying to slam you...0
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Apple,
Why do the strong and healthy get slammed with 4th stage? I know of several women like this. One lady in particular simply had an ache in her leg, thought it was from overuse in exercising BAM 4th stage from BC. How does this happen? Her mets were all over in her bones and fought it for 9 yrs.
I was convinced I had a boatload all over in my RB. MRI showed mets to sternum and liver. Bone scan and CT scan said not the case. I still was sure I was filled with it. Ended up with 4mm IDC that was removed with the NB and some DCIS. I had a RMX and waited for the bomb to drop...didn't.
I forgot to mention I was DX in 1994 with DCIS, LCIS and tubular cancer in that breast. The only treatment I had was a lumpectomy, no rads, no chemo. That's why I though I was doomed. Cancer is unpredictible and mysterious. I pray all this money that's being pumped into research can at least figure out the nature of these cells.
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apple and rianne,
my mother asks the same questions-- why she of all people gets cancer, she does not have any of the aging related diseases such as diabetes or hypertension-- she is very active, does not drink alcohol, does not smoke, not very fond of fast food or junk foods..
after attending a seminar on environmental causes of Cancer, she finally was able to identify her constant exposures to toxin such as
- dioxin (before we moved to Singapore-- we live in the Philippines a few kilometers to an open dumpsite called Payatas-- you can google this "Payatas dioxin"
- In 2002, a study was conducted that proves that breastmilk of women working in the Payatas dumpsite are unsafe as it is has high levels of dioxin
- though we live a few kilometers away from this dumpsite -- in a subdividision, dioxin is invisible and is in the air
- our supply of water then is from a deep well-- again-- google this " Arsenic and deep well"
- last year we found out she have more than the tolerable level of Arsenic in her body
- she worked for a garment factory that uses synthetic fiber (The kind that has very small particles than can go through your nose and to your blood stream)
- she have a very stressful life-- working to put me through college while managing other personal/domestic issues
- there are probably more unknown factors that hit her at the time when she is at her most vulnerable moment
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I'm also confused by the reaction to lago's post, which seemed complimentary to me. And she herself said so. Why can't you accept that?
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I also thought Lago's post was sincere and meant to encourage. I don't understand how some of you could interpret it to be "snippy" but I guess it shows how differently we see things . . .
Wornoutmom: I think I first noticed this thread because I liked your name. That's how I felt even before I was diagnosed . . . lol. Also my diagnosis was similar to yours, I had an aggressive tumor that had spread to the lymph nodes. I was so discouraged by my prognosis that for a second I thought about giving up. Then I decided I would do everything I could to fight it for my kids' sake. I did neoadjuvant chemo and it worked good for me. I know it doesn't for everyone, but the only good thing about having aggressive grade 3 is that it responds better to chemo. The best news for me is that my path report now says I am stage 1aN0, all my nodes were negative.
Apple: I like reading your posts, I don't find them depressing at all. I worry about my kids also. My goal is just to see them graduate from high school, I hope I can be around for that.
I have not heard anyone talk about integrative medicine. The Memorial Sloan Kettering website has an integrative medicine section where you can look up different herbs and supplements. Now that I have finished my conventional treatment, I am interested in looking into that.
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hmmm, MOC, digger, lago, lynn,WOM-- just let it go.. it will just stress us all
WOM is quite busy and does not have the time to read all our posts-- she takes her kids to school.
i'd say, just let it go.. let us not read too much of these things.. its not healthy!
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nanay: Are you the spokesperson for WOM now? lol
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lynn-- I wish I was
hehehhemaybe its just that I can relate to WOM more .. but its not personal. I would say, we all mean well.. people have different interpretations of what is being said.
I am always misinterpreted as well-- cause I am always busy too and does not have enough time to check my grammar and my tone of "voice" -- writing.. so I can I also relate to lago..
but still hope we can all just let it go..
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nanay: Seriously, I have a good friend from the Phillipines and both of her parents died of cancer . . . I wonder if there are higher rates of cancer there?
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lynn,
you might want to start another thread on integrative medicine.
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hi lynn,
I would not be surprise if the rate of BC in the Philippines is the same in the US.. what with all the DDT still being used in farming in the Phillipines
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Read about the Philippine Breast Cancer Network (PBCN) here
PBCN is a grassroots organization advocating the prevention of BC in the Philippines..
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Lago...dont go. If that wasn't your intent, I sincerely apologize. I initially got the same vibe as WOM from your post because of the phrase "Just to let you know". Maybe we "alternative girls" are somewhat defensive because it seems some think, because we haven't chosen conventional medicine like the majority, we are perhaps uneducated about our disease. I think for the most of us the very opposite is true. We have researched both "sides" and made a decision based on what we found. I researched Herceptin and the chemo (TCH) that was put before me by my onc at length and feel I made a very educated decision based on my situation. So I took your post to say basically, "Congratulations but just to let you know, it's only because you were node negative that you show NED" as if I didnt know my own status backwards and forwards.
Again, please stick around...we all have something to offer and I look forward to the information for both "sides." BCO has been a large part of my education and I say thanks to all who are here to help.
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I had a positive node.did surgery and rads BUT nothing but alternative for me...
Lago---dont go..you have lots of good info what ever thread you go on.I dont post here kinda just jump all over the place but please we are all here to help each other.
we have to fight this thing together.Sistas helping sistas.God bless us all.huggs K
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I don't want Lago to leave the thread, but honestly, can anyone blame her? This thread is so full of recrimination, bullying, condescension, nitpicking...Jesus. "us" vs. "them".......then a round of "why can't we all get along?"
but grannydukes, your sentiments and uplifting words are right. i just think this thread has exhausted folks and they see no point in continuing the effort here.
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