Team ILC Warriors
Comments
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Also, remember ILC doesn't respond to chemo nearly as well as other breast cancers do!
And, this is also interesting...
"A review of all known relevant clinical trials concluded that if the average cancer patient gets chemotherapy, his or her chances of still being alive 5 years from now increases by a pitiful 2.1% in America. That is barely worth getting dressed for. And this study does not even say anything about quality of life either."
http://healingresearch.net/2011/01/where-are-the-chemotherapy-statistics-i%e2%80%99ll-show-you/
I am not trying to upset any ladies here or start any kind of debate...I really just want to offer some info/studies I have found so we can all keep an open mind with our treatments. I would never, myself, just trust blindly a billion dollar a year industry with my life in their hands. I research everything...from toys for my kids to vitamins etc....Wouldn't any of you also look at both sides so you can come to a fair conclusion, especially when our lives are at stake?
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Also....cancer is systemic...wouldn't we rather find the cause and cure that? Rather than just treating symptoms with carcinogenic tamoxifen, chemo and rads?...
Cancer of any form is almost always a nutritional deficiency and/or a fungal infection...much research on this as well...
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I think it is highly misleading to tout iodine as a BC cure or treatment.
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Iodine is not a cure in itself...takes many companion nutrients which is very much highlighted in the protocol. (also, need to change diet and detox!) We are all very deficient in magnesium, niacin, vitamin D/C and B viatmins....these are needed to be taken in order for iodine to help significantly...have you researched this? I, personally, think it is misleading to think chemo is a breast cancer cure or treatment.
Again, I mean no disrespect, but please research it thoroughly (not just from one website alone) before passing any judgement.0 -
Here is great info on iodine...http://www.amazon.com/dp/1552128849/?tag=mh0b-20&hvadid=1459524692&ref=pd_sl_4hps64uejb_b
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The scary truth about Tamoxifen!
http://www.preventcancer.com/losing/nci/drug_ties.htm
Both the National Cancer Institute (NCI) and the American Cancer Society (ACS) supported the drug company, AstraZeneca to profit from the drug Tamoxifen [Tamoxifen.doc]. AstraZeneca (formerly known as Zeneca before it merged with the Swedish pharmaceutical company Astra) was owned by Imperial Chemical Industries, a leading international manufacturer of industrial chemicals and carcinogenic pesticides. Teaming up with taxpayer-supported NCI and “charitable” ACS was a masterful public relations coup for AstraZeneca, providing the company with valuable, albeit undeserved, goodwill from millions of American women.
AstraZeneca profits from treating breast cancer, and hopes to profit still more from the prospects of large-scale national use of Tamoxifen for breast cancer "prevention."
The five-year clinical trial claimed that Tamoxifen reduced breast cancer risks
by 30 percent. The risks of this toxic drug, including potentially fatal uterine
cancer and blood clots, were noted but trivialized. As the trials progressed, it
became clear that the risk of serious complications outweighed professed
benefits. Women have still not been informed about delayed risks of liver
cancer.Also...
After an extensive review of clinical oncology studies, for example, Dr. Ulrich
Abel of the Institute of Epidemiology and Biometry at the University of
Heidelberg, Germany, concluded that for most patients chemotherapy functions as
little more than a placebo, with an attendant decline in quality of life from
the toxic treatment.0 -
I also just ran across this interesting article..."Chemo for breast cancer causing brain damage"
Author sites reputable studies...
http://www.naturalnews.com/034157_chemotherapy_brain_damage.html
Wanted to send this out with the best intentions, because, remember us ILC gals don't benefit from chemo as much as previously thought!
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Thanks Joellelee! I needed to be reminded of the characteristics of ILC because the nightmare I have been living for almost 3 years now doesn't remind me everyday.
I looked at both sides too and came to my conclusion. It was a great feeling to be able to feel my tumor shrinking with every one of those horrible treatments. However, you do not see a post from me telling anyone that is using natural remedies that I think they are bogus/dangerous. No matter how helpful you think you are being, you are coming off judgemental and frankly like you think you have a phd in natural medicine.
I read the Livestrong article you mentioned and nowhere in it does it say the chemo is not effective. It says it is not a cure which is not news to any of us because there is no cure for breast cancer and any site that is telling you otherwise is not reliable.
This site is supposed to be supportive and informative and along with that comes responsibility. Tell your story, your experiences, new promising options medical and/or natural that you have heard about, but please stop the war on standard therapy whether you want to believe it or not it has also saved many lives.
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I am sorry if I am coming off a certain way. For some reason, anyone on these forums who has alternative views are usually attacked. I never attacked anyone. I was simply trying to offer helpful info that some might find helpful...open mindedness. I don't feel I berated anyone at all. As soon as I offered anything different than the norm, people get offended. I never get offended when people poopoo my point of views. I never claimed to have a PHD, what I do claim is to be open minded and look at BOTH sides of the coin for my kids sake, for my survival. I just assumed I might be of some help since I have spent many years researching alternative views in medicine. Sometimes having a PHD means zilch. many people throughout history who have had much to offer, didn't have PHDs in said subject. If I am bothering anyone, I will leave.
Please keep in mind, tumors etc will shrink initially w/ chemo etc only to come back scarier later in life when your immune system is quite damaged from standard of care. I am only trying to help, never meant to offend.
I ask again....have many of you done any research beyond the standard of care studies that are funded thru parties of conflict of interest? This is an intelligent question...I know many of you have.
Again, I didn't start a 'war'...someone else here attacked the iodine protocol first etc...I don't even consider it a war, just sharing information...but, I will depart....I really wish everyone well!!!!!!! I really do. XXXooo
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One look at the Natural News website put me off - they talk like they are stating only the facts and it's like you are being brainwashed.
Jollelee - no one is attacking you, but your links to those articles belong in the Alternative forum.
There are plenty of retrospective studies which show the benefit of chemo and rads. There was one graph I loved which showed a huge improvement in survival for Stage 1 HER2 women.
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Joellelee (I posted this, with a few changes, to you on another thread--the complementary and alternative one).
Unfortunately cancer tx isn't as simple as you seem to want it to be--a black or white choice. Truth lies in the middle, meaning that there are so many variables that can't be predicted by taking supplements and having a positive attitude alone, OR doing chemo and rads alone. It seems you are really working through your own plan of treatment and focusing on percentage of survival, which tells me you are really doing your homework. I think you are trying to prove to yourself out loud that you are making the right choice to reject conventional treatment, but instead please consider that you might be alienating some of us who have already gone through our own course of treatments. I'm not sure that your links for alternatives are best served here? Perhaps in the "alternative treatments only" thread?
Someone on this thread could also post the scary stats about not doing chemo, or not doing rads, or your survival rate with those positive notes and alternative tx only, but I see that they aren't. We understand that we all need to try to be gentle with each other: a b.c. dx is so life-changing and frightening. We aren't here to scare ourselves any more than we've been scared already.
For me, I wanted every percentage--even that 1% advantage--and chose both conventional and supplemental tx. Someone has to be in that 1%, and I wanted that chance. My husband died 17 years ago from oral cancer--and he was told that he had a 90% chance of survival, so we felt very hopeful. Unfortunately, we eventually understood that someone has to be in that 10% of those who didn't survive.
Percentages are both useful and dangerous, I feel. But for me, knowing my strength and my body and my health, I knew I could handle anything my oncologist and I decided to throw at my cancer to capture those little single-digit percentages. In my case tx was lumpectomy, 5 months chemo, 6 weeks of rads, tamoxifen, and a bmx/recon. No ill effects from any of them. Add to that 3-5+ hours of exercise a week, a lean body, a mostly vegan, all organic diet, supplements, positive spirituality, and meaning in my life--and I feel that I'm doing everything I can to live a long life. I hope.
Namaste, ILC sisters, and especially to Joellee.
Claire
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Suzie...Why would I be shunned to the alternative forum? I was unaware that this ILC forum was only for conventional treatment believers? I have no problem with you being put off by natural News...I, myself, am put off by studies from sources who only have funds to gain...i.e. those by the ACS etc...or the studies that the Tamoxifen company funds to benefit their own pockets etc...
Again, I was unaware that I am not allowed to provide alternative linx....wow! now I know what it feels like to be treated like a minority etc...
Since everyone was asking for my studies etc...may I see your studies on the benefits of chemo/rads...who funds them?
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Hi Claire!
Again...DID NOT realize only conventional studies were allowed here...wowee!!!
I never began poopooing chemo...someone here poopooed the iodine protocol...why are they not asked to go elsewhere either? Iodine is a conventional nutrient need that used to be in our bread we ate on a daily basis before the FDA took it out!!! Did anyone realize that?
I really, truly felt I was sharing info...not trying to prove myself etc...I don't feel stats are significant either, BUT I keep seeing ladies here everywhere talking about stats for chemo/rads/Tamoxifen etc etc....again, i am so sorry! I said I would leave and I will. Was just answering some of your questions again!
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Joellee,
I don't think anyone is shunning you, but the vast majority of your posts are about alternative tx only, and if you read the OP, less about ILC in general, which is what started this thread. You are welcome here, of course...as an ILC sister. I personally welcome credible, current (as current as possible) information on ILC tx and other topics pertinent to ILC.
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Claire...This is what the original poster has for her starting post...
"Any advice or guidance you can give those of us with ILC is appreciated. I could really use a place to post with others in the same phase as myself or those with experience to share, hoping this will be beneficial to others also.
Of course all are welcome!"
Sooooo, I thought I was welcome.
Just because my thoughts are alternative, why should I have to move to another catagory? I am still ILC...am I not allowed to post my personal beliefs in the ILC catagory like everyone else? I am shocked that we all have to have the same beliefs in order to belong?????
My thoughts ARE pertinent to ILC as very recent studies by MD Anderson show Tamoxifen and chemo to not be effective for ILC cancers....Many other ILC ladies are talking about this on other links.
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Joellelee please don't leave - i valué your input and that of everyone here - if you do leave i hope you will stay in touch with me? I don't think anyone wants you to go actually
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Hi Lily
Thanks for the kind words...I don't think anyone wants me to leave either, nobody has actually suggested that...But, I don't really feel welcome. I am quite upset that I am not allowed to post my beliefs here and be my own person, an individual. Especially, since the original poster was saying 'everyone is welcome"...So, I really don't know what help I would be to the majority, since everyone seems to be offended and wants me to go to the alternative forum. I really hope you ILC ladies will research MD Anderson's recent studies on ILC cancers! I will lay low...Lily, I will definitely stay in touch!!!! XXOO0 -
Recent study does not mean a good study. Honestly these blanket statements about studies are very concerning.... I have a health care background and I have worked and studied research and I have to say please please please understand one study doesnt mean it so or even 2 or 3. Do you know how to critic a study ?
Joelle I understand what you are saying and it is always good to look at both sides of the coin..but you talk about bias in the medical industry.. but there is also huge bias in the naturalistic industry.
I also dont think you are respecting those of us that have gone the more traditional route, I think most are trying to respect your views on natural medicine but when you are slamming chemo or rads its difficult. Also you talk about space suits, one has to remember the people that are mixing chemotherapy are doing this all day every day.. of course they have to be protected. Chemo and rads do save lives and what appears to be at great cost to you isnt to another. Would it be great if we had a proven treatment that does not have toxic effects to the body of course and we are making strides with targeted therapy.
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Joelle, pointing out the logic fails in alternative theories is not an attack, nor is it an indication of anyone being "offended."
Yes, I have researched a long list of alternative therapies. None so far has been convincing after investigation.
There are several alternative strategies that may well help, anywhere from some to a whole lot, in averting cancer recurrence. Of these, the most important ones I have found are exercise and lots of veggies in your diet. It is not a cure, it is not exotic, it is not glamorous, it does not fly in the face of conventional approaches and it takes actual effort.
It probably also helps to keep your vitamin D levels up, although the jury is still out on that one, and it may also help to take aspirin and eat anti-inflammatory foods.
Lastly, it is probably quite important to get enough fibre and take probiotics to promote optimal intestinal health. All those Greek and Jewish grandmas were right all along.
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Hi RDrunner....Yes, my studies are not perfect as everyone else's are not perfect...it truly is not a perfect world. I was the one first attacked with the iodine protocol...I don't understand why I am the only one being targeted here. I am not attacking chemo...I have two friends who did chemo 20 years ago and are alive, they do however have heart problems...but, they are still alive. And, who knows if they would have had heart problems if they didn't do the chemo. Nothing is perfect, I agree. Was just sharing my beliefs since the original poster asked us all to and said everyone was welcome.
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This is where a lot of people would rather be alive with heart problems than be dead. Obviosuly the ideal would be to be alive and not have heart problems, but you take what you can get.
I had epirubicin in my chemo cocktail. Epirubicin was the chemo that really scared the docs. While they were dripping that vile stuff, also known as the "red devil," into my vein, my onc sat behind me with a stethoscope on my heart. I have since had a careful check of my heart, and it is fine. The chemo can cause problems, but that does not mean that it always does. The last cardio-guy who checked me out almost cried from joy at my excellent heart function. Also, there have been advances in the last 20 years.
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Great! We all have to make the best decisions for ourselves! I have said all along that the best treatment for each of us and the one that works the best is the one we most believe in...I respect everyones beliefs and their decisions...just thought I deserved the same in return.
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"The scary truth about tamoxifen"..."chemo may shrink your cancer initially, but it will come back bigger and scarier" ... how do you think that sounds? Respectful? Helpful? I am not attacking you. I am offended by your choice of words when talking about treatment choices. Fine, you don't want to go the traditional route, I really don't care. I have gone back and you were the first one to start with the evils of chemo and rads. I also found the iodine post and that poster just said she didn't believe it, she didn't say it was toxic, horrible,etc... Everybody wants to support everyone here, but when you start stressing everyone out by telling them everything they did was wrong and here's why, then you are going to get some kickback.
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Joellee, your posts are coming off a little bit defensive and strident. I believe the majority of us here on all these boards are open-minded, but your zealousness may leave a lot of people who would most likely consider your postings a bit cold.
You are still welcome, of course. I would just like to see supported research for what you claim as good or bad for ILC, with the links to the credible research, and not just the statements that "this is helpful" or "I heard this is harmful". That's all.
Peace to all of you!
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Just do a search on this forum for ILC and chemo and you'll find many women discussing how chemo isn't as effective as they had originally thought. I don't see any supported research from you ladies either....I don't feel I am being zealous...just sharing info. I don't feel I am being defensive...although, I should feel that way as I am being attacked. I feel you are all being defensive and a little sensitive. I am sorry if I believe chemo doesn't help our type of cancer....am I not allowed to have my own beliefs? Just because you all feel differently....craziness.
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Sigh, I was so excited to see a group of just ILC ladies!! I started from the very beginning of the thread to get to know everyone before jumping in, and it seems to have turned a bit in the last day. Hopefully, this angst will pass.
To introduce myself, I was diagnosed a year ago at 44 with ILC. MRI showed about a 2 cm tumor, but I chose a BMX due to my family history. The biopsy showed the tumor was 98% progesterone positive, 96% estrogen positive and her2-. Pathology found the main tumor 3.5 cm, grade 3 and another one that was 1.3 and my "healthy" right breast had 6 small areas of dcis. Obviously BMX was the right choice for me. I had some difficulties with reconstruction, but have finally had success after a couple trips to the masters in New Orleans. My stage 2 was 2 weeks ago, and I am thrilled with my results!
My oncotype was 19, and did 4 rounds of taxotere and cytoxin with limited side effects. I am very happy with the treatment I received, and feel I did all the research possible and then made the choices I was comfortable with. If, God forbid, I have a recurrence I feel that I did everything in my power to help myself.
To explain my family history, I have 2 sisters with breast cancer. One was diagnosed at 38, had mastectomy, rads and chemo and is a 20 years survivor. The other was diagnosed at 29 (yes, 29!!) and was treated holistically. She declined surgery and was treated with vitamins, healthy eating and I'm not sure what else. I was only 20 at the time. She did what she thought was best for her within her reliously beliefs, but sadly, she died at 31.
Not one of us knows the perfect way to treat the crappy hand we were dealt. However, we all make our our informed decisions and most of us don't take kindly to someone stridently telling us how wrong we are. I would love to turn back the hands of time and tell my sister how wrong she was to refuse treatment, but she truly believed she was making the right decision with the facts she had at the time. She was certain she was on the road to recovery, and there were some signs that she was. However, she took a swift turn and passed quickly. Her kids were 6 and 2.
I have no way of knowing if I chose the right treatment plan, but I am at peace with my decisions. Now, I can only hope for no recurrence and exceed my other sister's 20 year survival!!0 -
Hi Dianne!
I'm glad you're happy with your reconstruction. I'm nearing the end of my fills, and just this week, experiencing shoulder and armpit pain. I feel like I'm filled to the max and can't imaging another cc in there! Did you have pain before your exchange? When my fills are done, my ps is going to wait three months to do the exchange (scheduled for June 12).
I also feel like I chose aggressive tx every step of the way, and don't regret any of the decisions I've made, either. But, I'm supportive of everyone's choices.0 -
I don't have implants. I had an immediate DIEP with my BMX locally, but both flaps failed. I then went to New Orleans and had a gap flap with great results. I just had my revisions and nipples and all is well. Long road, but all ended well.
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Hi Dianne!
I know you from the Nola/Diep threads!
I am so sorry for the loss of your sister. I am wondering, though, why you wish you could go back and tell her how wrong she was to decline treatment? I see many success stories for chemo and many success stories w/ holistic treatment. As you had said, we all make the best choices with the hands we are dealt.
Some people do chemo and still have recurrances later and don't make it..., some do chemo etc and live 20 years....some do nothing and survive, some do just surgery and survive...some do holistic and pass suddenly. I really feel that when it's your time, it's your time...again, so sorry for your loss. I lost a sister as well, not to cancer, but still heartbreaking of course. xxoo
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The main thing I wish my sister would have done is surgery. Like I said, her religion did not allow surgery at the time so the tumor was able to grow unchecked, and it grew quickly. We'll never know if it would have made a difference, but I feel strongly that it couldn't have hurt.
Her religion has changed their stance and they now allow surgery in some cases. Sadly, her husband was diagnosed 2 years ago with stage 4 colon cancer that had spread to his liver. He was able to have surgery on both the colon and liver and 2 different rounds of chemo. He is now NED, and his initial diagnosis was far more serious than hers. He has said he regrets that she was not able to at least have surgery. He's lived with a lot of guilt over that, but again, they did the best they could at the time.
We've come a long way since 1988, thank goodness. Interestingly, I am BRCA negative and have one lucky sister out there who is cancer free!
Remind me, Joell, did you go to NOLA? Who did your DIEP?0
