Survivors who have used only alternative treatments
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perhaps.. (same battle, different weapons).
Many of us have pointed out the seriousness of Wornoutmom's triple positive status and rather late stage. I don't know that a bee bee gun is going to work with all due respect.
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now let me tell you about all the alternative quacks we have met along the way
- invited us for a "Cancer Seminar' -- a few "cancer survivors" talked in the pulpit.. then asked us to go for free consultation-- then tried to sell us all possible anti-cancer supplements and cancer cure all in one tablet..I asked a few questions to the "doctor", bad answers, I left the cubicle without a word with a smile and said thanks but no thanks..
- went to an organic store--- a lady noticed us as regular customers,, had a friendly chat, as soon as I said cancer, she pointed me to a section in the store, which sells papaya enzymes ( " many cancer patients buy this") -- yeah, right!
- searched for a wholistic spa-- was offered all sorts of anti-cancer treatments..
made me think that this disease has been overly commercialized, as if it is just having a cough or cold. sigh! I wish it was that simple.
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apple, if WOM is 100% sold to conventional approach, I would not even have to post any single message here.. but she is looking for support -- a lifeline..
am not asking her to follow our regimen, just telling her that she needs to process her thoughts well, it seems she have done a lot of study and have already made up her mind, she just needs to take action and she needs to do it fast..
she was prescribed a BC pill for an early stage cancer, did not work for her, now she is on an advanced stage and finding like minded people who will support her whatever decision she makes..
she is lucky to have all of us--even if we are using different weapons. In sun tzu's art of war, there are many techniques to fight depending on who you are fighting with.
agressive if agressive? probably not Sun Tzu's choice... some will play defensive against an agressive foe.
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apple,
wom's early stage BC (a few years ago), wasn't so serious that she was prescribed with Birth control pills.. and it did not work..
now its sooo serious and we are now giving her more information to make an informed decision. she was not armed with all this information during the early stage.. now she is..more informed.. whatever decision she makes, I am pretty sure it is not out of ignorance.
if she takes convetional approach, I would still support her..
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i support your support nanay... you are thoughtful cetainly.. it's the triple positive thing that has me concerned. I know what it is like to feel my cancer grow in spite of treatment.. very yucky.
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I was not offered or recommended ablation therapy, diagnosed at 39 and VERY pre-menopausal. If I had been BRCA+,my oncologist would have sent me straight to ablation.
The concern, from what I understand, is that there are other health risks with putting women into early menopause. Chemo may have done that to me. It may be better for ER+ cancers, though they really aren't 100% sure on that. However, it invites a host of other issues, from osteoporosis, to heart health.
We know one thing for sure: all treatments have consequences, whether holistic, or allopathic. There are no clean decisions on this one yet! For instance, many naturopaths are concerned now that anti-oxidants may very well protect cancers as well as defender cells.
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hi apple,
now let us talk about Her2+++, whoah this is going to be really messy.
my mother is also Her2+++ , please take note that there are 3 other targeted therapies for Her2positive patients
Her2 is some kind of protein that inhibits the cells to grown abnormally in a rapid manner
1. Herceptin which is widely promoted in this thread - works by blocking the ability of the cancer cells to receive chemical signals that tells the cells to grow
2. Tykerb - for Her2postiive patients that are resistant to Herceptin - blocks certain proteins that promotes uncontrolled cell growth
3. Avastin - works by blocking the growth of new blood cells that cancer cells need to grow and function..
a few things we all should study here is what is that chemical that signals these cancers to grow, what is that protein that promotes uncontrolled cell growth and what is the correlation of blood vessels to cancer growth?
remember that the reason why we call cancer cancer is because of its crab-like appearance (tumuor with arms-- or blood vessels surrounding it and attaching itself to surrounding tissues)
and then there are Her2 BCs that are resistant to Herceptin, which gave way to the development of Avastin and Tykerb..
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60 yr old BC Stage 2B ER+ (90%) Her2+++ with mutated BRCA 2 genes. Radical mastetomy with lymph node removal 8 Feb 2010. No chemo and radiation and completed a 42 day fast patterned after Gerson Theraphy (March 2010)..
Diagnosis: 1/9/2010, IDC, 3cm, Stage IIb, Grade 3, 3/25 nodes, ER+/PR-, HER2+0 -
I think WOM's cancer was actually her+, not triple negative. This means that if she doesn't choose to use herceptin it will be even more aggressive than triple negative.
And Nanay, I think you are misunderstanding WOM's post. She was not diagnosed early stage and given a medication back then that failed. She was not diagnosed at all, they missed her breast cancer and prescribed birth control pills, which she feels accelerated her cancer and she may be right about that. She wasn't diagnosed until her cancer was quite advanced. I'd be pissed too. But she is not in the position of having mainstream or any treatments fail her because she has only recently been diagnosed with breast cancer.
I wonder if some of nanay's posts seem confused because of a language issue. Lots of things have been garbled in the process. But I'm also concerned because some of the substantive ideas are garbled as well and lots of back tracking. First she studied women with advanced cancers because it was most like her mother's, then it was because she was studying worst case scenarios. Thats just one example. I think it is understandable because these are very arcane issues. But -- to be perfectly honest -- if I was nanay, or myself! -- I would not be so quick to substitute my judgment for my doctors'.
Your mother was right to have surgery. Not only did she have an aggressive cancer but she has the genetic mutation and is likely to get another breast cancer. The surgery should prevent that. My mother had vertigo as well and I've never heard this thing about surgeries. She had several surgeries without any problem at all, and this was never raised as an issue. I am skeptical.
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I think wornoutmom stated previously that there was yet another error and she is T1 not T2. This may very well affect her stage, i.e., put her in stage II as opposed to III. Someone who is better versed in staging protocol than me could say more on this...
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Member: You are right about the BRCA2 stuff. I would for sure get my ovaries removed if I had that mutation, because ovarian cancer is very difficult to diagnose until later stage, and by then it has a poor prognosis.
During radiation I met a woman who was BRCA 2 and just diagnosed with her 2nd breast cancer. About 10 years ago, when she was in her 30's she had a mx, now it's back on the other side, and in the chest wall.
You are right also, it doesn't sound like WOM was diagnosed at an earlier stage. She said she was misdiagnosed.
I am happy for Herceptin, it really helps a lot of you. I had my receptors re-tested in case I was HER2+, just in case. Many of us Triple Negative are waiting for our own version of Herceptin, hopefully we will get a treatment like that soon.
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An overdose of anesthesia, as was probably the case with nanay's mom, may cause vertigo. Also, not everyone reacts the same way. And, there are many things doctors don't tell you.
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Heidihill: I don't think the size of tumor matters that much when you are HER2+ and have lymph node involvement . . . staging can really vary according to what doctor you talk to.
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Nanay did not say surgery caused her mother's vertigo, only that she had vertigo prior to surgery.
Also, Avastin is not a targetted therapy for her2 cancers. Its no longer a therapy at all for breast cancer (which is a complicated thing since studies did not demonstrate a benefit but for some metastatic patients its been a tremendous benefit.)
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hi memberoftheclub,
please do not jump into conclusion just because of simple oversight. it seems you are in this thread far more than I could have imagined, and is literally reading every posts word for word and I would like to commend you on that.
However, I think it is a terrible thing to say that I am making the wrong decisions just because I cannot express myself well in this thread...
again, am not imposing my opinions to anyone, just showing how I came up with this decision, but I would agree that this is not the most ideal channel to discuss life and death issues such as Breast Cancer Treatment plans and used information from this to mke a decision...as this thread has several limitations.. if we can all just sit down in a big long table, with medical reports, computers and a projector at our disposal we could better communicate and dialogue... without attacking personal differences or limitations of time
again, this thread is supposedly for people who are interested on alternative meds.. and its quite good that you are sharing your perspective -- and have already done so..
again I welcome your challenges-- just please try not to sound as if you are attacking me or my credibility-- because believe me that is how you sound based on your writings-- but am pretty sure that is not a representation of your own persona... you are probably a tender hearted woman open to discussion.. its just the way you write..
I will remain in this thread if you promise not to antagonize me as a person-- coz am also sacrificing time which I would have spent to my mother or my daughter-- to answer the author's question and even your questions that sometimes-- throw me out of line because of its emotional content.. I try my best to respond to your question without being emotional myself..
I am not here to defend my position for the sake of defending it.. but in the course of our discussion and all the information you are sharing here-- which will lead me to study more-- and in the end change my decision-- I would really thank you for your time and the passion you put into proving you are right...
however, just give me a chance and again-- you probably have some preconceived notions about people like me believing in alternative meds... but for you-- I would completely treat you as an indvidual and not remove all my preconceived notion about people who believe only in conventional medicine..
I repeat again-- that I respet conventional medicine.. its just that there are still questions that even the best doctors I've talked to failed to answer or convince me as well.. maybe your doctors are the best in the world. I wish I could talk to them too, and find the answer that will convince me to do otherwise.. you are also trying your best to share what is in your head.. but you have not answered some of my questions either..
here is my proposal, I will list a few questions and then you can ask your doctor yourself, then come back to this thread for the answer..
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skeptical, if you can be skeptical with me, I hope you can be skeptical with others too, including your doctor. if you have a very good doctor, am sure he would welcome your skepticism and entertain your questions as well.
in terms of judgement call-- you have the right to follow your doctor's advice and we do have the right to question and make our judgement call as well.
again and again, I have told you I have followed conventional doctor's advice ( I just made sure I am listenign to the right doctor-- not to say that I am an expert in that field-- )
there are people like you who would prefer to listen to what the doctor says and believe me I will be the one to say, am glad you found a good doctor that you are willing to put your life in his hands without a question..
however, I and my mother, are naturally inquisitive. and this is not to say that we are better people just because we are inquisitive..its just a matter of preference and its a matter of choice..
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about WOM's BC, we were communicating via PM Messages.. maybe she can confirm it later in this thread.. but my understanding based on her PM was that she knows she had early stage breast cancer at the time she was prescribed with Birth Control pills.
the point am trying to make here is, whether she was misdiagnosed or that the treatment failed her, how many more misdiagnosis and failed treatments can she still tolerate?
I know one 40 year old woman who was Her+ who was given all 3 targeted theraphies, all possible combinations of Herceptin, Tykerb and Avastin (and this was back in 2008), sometimes in combination with chemo and rads..
now she is dead with 2 young kids and a husband who found it easier to see her dead than to see her suffer mercilessly..
by the way, I am pretty sure that WOM is her+ not triple negative.. and that is also what I have said in this thread she is her2 positive just like my mother..
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here is the blog of the woman who took all 3 targeted theraphies
http://shinscancerblog.blogspot.com/2006/01/my-chemo-treatments.html
did the medical world fail her? did the treatemetns fail her? or its just that her cancer was too agressive so cancer failed her?
one thing am sure if she did not die because of cancer , but because of complications that hit her lungs-- read her entry dated January 2009-- she knows how it happened -- but she did not even blame anyone...
probably all the targeted theraphies she took could have worked if not because of the complications.. but how much more attack to the system could one bear without complications..
I hope member of the club, that you are also asking these questions to your doctors--because this is very important..
I would want to hear that you survive because of Herceptin- I really do..
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here is a list of questions, which I would propose that we all ask our doctors
1. what are the chemical signals that tells cancer cells to grow? how does Herceptin do this? what are the ingredients in Herceptin that actually blocks this ability to send chemical signals tot he cancer cells
2. what kind of protein inhibits the growth of cancer cells?
3. what is the correlation of blood vessels to cancer cells? and if Avastin controls the blood vessels that supplies blood to the cancer cells so that it grows.. why did FDA stopped promoting its usage?
If someone can help post the answers here point by point-- (based on what the doctor told you_that would really be great)
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cancer cells -- can they just circulate around your bloodstream withouth doing any harm to critical organs? or they will have to attach themselves to tissue/organ in order for them to keep growing? how do they attach themselves to the tissue/organ?
what is the implication if they attach themselves to a breast tissue? how does it compare to attaching it to a more critical organ such as your heart or your lungs? would it be bigger? or just the same?
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Nanay, you're asking that we all ask about herceptin, but that's only used in HER2+ BC which most of us don't have. Member of the Club also is HER2 negative so doesn't need herceptin.
1. What makes cancer cells grow? If you read the "Clinical Trials, Research, News and Study Results" forum here you will find that most research is about that question. Proteins, enzymes, hormones, genes, telomeres, stem cells, it's like a maze and they are lost somewhere in the middle, but at least they are working hard on finding a weak link. It seems that the more they find out, the more they realize they don't know. Try this link for starters.
http://www.medicalnewstoday.com/articles/220614.php
2. Same answer as 1. Our doctors would have a full time job explaining what is known so far and that's incomplete.
3. Avastin. Side effects in most cases were considered not worth the limited benefits, though for some women they had significant benefits. Try searching the forum for Avastin.
-Cancer cells / spread. They seem to have a preference for attaching to certain tissues. Bones are preferred, then liver, lungs and brain. Also distant lymph nodes. I've never heard of heart mets but that would be late stage mets. They rarely metastasize to the breast, I think that's more often a new cancer or recurrence. That's not a good explanation so I hope you know what I mean.
I'm a bit like you, wanting to find out as much as possible and not trusting the system, but I'm trying not to have a nervous breakdown in the process. Making those early treatment decisions is harrowing for most but when trying to do our own research, makes it even worse, please enjoy your family and take your mother out for some relaxing fun days if you can.
Slow down girl, you're making "me" dizzy!
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Sheila,
hehehe
thanks for the nudge-- sheila means girl in Australia right? nice nick byt the way..sorry if I make you dizzy, I thought I was the only one getting dizzy reading posts and responding to posts..
anyways, it seems we all agree on one point.. we cannot search for the unsearchable.. even our doctors who spend all their lives finding the right answer still have a life to live.. so there is still no answer.. then how can we say agrressive cancer needs agressive treatment.. and that is the only way to treat an agressive cancer?
anyway. I think you are all native language speakers, and in my not so well written English-- you already understand my point..
well just to close.. pleas read this excerpt from Marissa Weiss, M.D who is part of the www.breastcancer.org panel..
She said, "I believe its important to avoid extra hormones from medication or food during the time f the breast is still developing (ages8-18 to about 20)...use organic sources of beef and dairy products . It's also important for girls to avoid exposures to synthetic wheat hormone like BPA. Girls and women should avoid unnecessary radiation. The first test that should be considered should be an ultrasound that does not involve radiation."
which supports my previous point --on why my mother turned vegetarian (organic beef and dairy is very expensive here in Singapore-- so decided to just avoid meat and dairy)
aside from ultrasound, thermography can also be one of the first tests for younger women (not DX with BC yet).
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Sheila,
thanks for answering my questions point by point--
excerpt from the article you gave me..
The growth and spread of breast cancer tumors "may be" delayed with a promising treatment that combines two innovative strategies:
1. blocking the enzyme needed to "energize" cancer cells
2. infusing a potent drug directly into the tumor with minimum exposure to healthy tissues..
#1 . sounds so natural (and even alternative to me)
#2. seems to be conventional
sounds promising right? my mother and I like #1, but 2, that is the part we do not like. But it is just us.. must be different for you.
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nanay..
you communicate perfectly well, (to counteract the suggestion that your English was blah blah blah).
Could you share some of your mother's diet details? Does she take any supplements?
Also, I wonder what the thinking was for prescribing birth control pills for WOM? Estrogen suppression?
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here is another point from the same article you gave me:
3. Once BC mestastases have been detected, current treatments (such as surgical ressection or tumor removal) may be ineffective.
4. We've found a way to keep a breast cancer tumuor dormant.
5. thus potentially increasing the likelihood that a tumuor can be treated successfully
this is from Jeff Geshwind, he seems to know all the moving parts, radiology, oncology and surgery and thus, was able to make a call -- look surgery (cut) - not necessary, look radiation (burn) not necessary-- he just cant let go of the chemo (poison) part though..
in point 4, he said, they have found a way to keep the tumour dormant...(in mind,, you only found out now? after so many decades of study, but anyway, am glad they did and they even publicized that they did found a way to make it dormant)..
in point 5, so the point he is trying to make is -- to make that tumuor dormant (dont touch it-- keep it at peace-- put it to sleep-- then attack it). which kind of works well with Sun Tzu's art of war..and going back to point #3, then it supports point number 3-- dont cut, dont agitate the cancer cells, keep them where they are... then launch your attack..(though I still dont like the attack part)
then why are most surgeons,, always insisting on cutting without consulting their peer conventional doctors..?
more-over if the first line of defense is to cut everytime tumour attaches itself to a part of the body, for example bone... are you going to cut each of your bones until every tumuor is gone? if the tumour attaches itself to lungs or kidney-- you will remove them too? I know it is not that simple, and surgeons do make some compromise as well..but you get the point.
cutting should not be the ONLY first line of defense.
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Actually I was named Sheila by my English family before moving to Australia. I should change my name in case any of them find me here. I've also visited Singapore on three occasions while travelling from England to Western Australia. Amazing place, amazing food, special memories. Now that's calming, remembering my travels. I hope you weren't offended at me saying "girl", as I'm 60, the same as your mother and I have sons aged 18 and 23 who keep me young at heart. I was trying to add some humour.
Getting back on topic, there's a whole thread about Dr Weiss and her "prevention" ideas, but ultimately they don't know the reason for 70% of BC, and most 'reasons' are just vague risk factors. It's too late for us to prevent the primary cancer so we need to know what is likely to prevent recurrence, apart from exercise, a healthy body weight and a healthy diet which are no guarantee. I stay away from meat and anything that might negatively effect my hormones. BCO keeps me up to date with information and is very supportive.
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Nanay, surgery is the first and most effective treatment for primary tumours but not for metastasis. That study is only one of thousands done each year. That's why I said it's a maze. None of those ideas will be used for 10 or more years if ever. It takes years to get to the clinical research stage then maybe seven years to set u the studies and wait for five year survival statistics.
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hi apple,
right after mastectomy, my mother did not eat anything but the Alkaline Juice based on the Breuss protocol + turmeric juice (yellow ginger) + coffee enema. You can google Breuss protocol. for 42 days
The idea is to make the body as Alkaline as possible because cancer thrives in an acidic environment. Even Arthtiris is caused by an acidic environment.
Drinking juice and turmeric tea will release a lot of toxins into the bloodstream, to help her in the detoxification process she also did coffee enema (but again apple- please do not do this without the support of a professional-- believe me there are conventional doctors who would be willing to support you through this-- the searching for that elusive doctor is probably the hardest part for us)..
after 42 days,she eased herself into vegetable soup, still based on the same vegetables used for her juice.. then she added some grains (all organic)..
however as much as possible she eats raw food (FOR THE supply of ENZYMES), we are fortunate to live in a tropical country so we have a papaya tree in front our house, she juices the leaves too and drink it fresh
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Nanay - whilst I commend your 'inquiring mind' and determination to research all aspects of your mother's disease,I feel, like MOC, that you sometimes misunderstand the issues.
You wondered why an endocrinologist was 'left out of the equation', basing this statement on the fact that some women have endocrine therapy as part of their treatment.However, the 'endocrine therapy' is in fact Aromatase Inhibitors, which would only be prescribed by a medical oncologist, since they are only used for breast cancer.
Sam
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we also installed a Fluoride filter for our tap water source, to ensure we are not drinking flouridated water as it also causes gene mutation.
organic green apple is our favorite source of carbs -- green tea and turmeric tea is a major part of her diet.. we also have steady supply of dragon fruit, grapes (for reservatol),
for the supplements, she takes extra doess of B1, B3 and Lipoic Acids, as her Organic Acid urine tests showed that her imbalance of Organic Acids makes her less able to produce these Vitamins- in a natural way
apparently the lack of B3 made her prone to insomnia, depression and muscle fatigue.. which was my mother's issue since the day I was born..
Dr. Lee also asked her if she is taking enough protein- we told him no, because she is a vegetarian.. so she was given a Protein supplement from Brown Rice. the doctor still advice that she eat meat-- organic preferably as she need it for her energy, but then again its so expensive, so she tought, she will just eat organice meat/dairy every "pay day"
which is once a month.however, during the first 8 months all these juicing, eating lots of fibers, did not do much to help her move her bowels daily.. which again was an issue for her since 15 years ago..
so we bought a trampolene, every day in the morning she would jump for 15 mins, until she feels the urge to move her bowels..
now she is not jumping everyday on the trampolene, but she can move her bowels every day -- I believe it is because somehow her digestive system is healing itself ..
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hi sam,
that is precisely my point, why is endocrine theraphy prescribed by a medical oncologist, who may not understand fully the full breadth and depth of the endocrine system.
you could probably ask your oncologists and see how he responds to the ratio of 2OH and 16OH. even my endocrinologist told me he would not want to make a comment about the world of oncologists as it may cost him his license.
He still said that decision to forego Tamoxifen or AI--- and take I3C/DIM should be left either to the patient or the oncologist (from a professional standpoint-- he does not want to mess around with the turf of other doctors)..
What I tried to point out in the endocrine theraphy discussion is not the specifics about the AI/Tamox, but the fact that the decision making process of each conventional doctor is NOT COLLABORATIVE, for fear of stepping on other people's toes.
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