natural girls
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Interesting study, Althea. I must admit, I read it thinking I would find later articles refuting it, because a mere 2% effectiveness seems really hard to grasp. But not so. Neither of the articles I found had anything negative to say about it, except to question if rad oncs were happy to figure out that rads has a better effectiveness (something like 16%) than chemo.
OTOH, if someone did a similar study using only data from NCI-designated cancer centers (where purportedly they have better outcomes, and where oncs should be on top of the latest research), and limited their study to only early stage bc, do you think outcomes would be as dismal? Deanna
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Althea: It is a newer and more successful aproach with us TN;s especially if the tumor(s) is large or close to the chest wall. Chemo shrunk it to a manageable size eliminating the need for radiation and making it easier to clear the margins. Without chemo it would have gone eventually into my lungs. My OncoPlasticSurgeon cut into my chest wall to insure they got it all. I have heard that chemo isn't as successful with ER+/PR+ unless there is a recurrence. For us TN;s it's surgery, chemo and radiation and not much else. It's such an aggressive BC and chemo usually works well for us, though not for all.
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Deanna, I agree it's hard to grasp just a 2% effectiveness rate for chemo. For those of us who have already been there done that, it sucks that maybe we're still here in spite of rather than because of chemo. That's how I feel anyway. Both my mom and grandmother had bc. The only treatment they received was surgery. My mom is now a 31 year survivor of her bc. Given my own family history, I just can't help but wonder if I could've still been here today without the chemo and the radiation.
In terms of bc cases in the future, I think the 2% effectiveness is potentially fantastic news because it will mean, hopefully, that a very expensive, very harsh treatment will fall to the wayside because it may not be very helpful in the first place. I see a lot of back and forth in other threads about 'this study says this' and 'that study says that', and my brain goes numb. What a lot of people see as facts, I see as opinions. What a lot of people see as evidence, I see as guesswork. History is riddled with all kinds of past practices that make any modernday woman cringe.
Personally, I am hugely thankful that surgery techniques have improved and that I didn't have the same kind of surgery that my mom had. And thank goodness for all those French women who questioned what the prevailing wisdom was at the time, which was to get every last bit of tissue and lymph node possible. We have them to thank for less devastating surgeries today.
Now we have some Australians who sifted through countless pages of studies only to learn something that goes against today's prevailing practice. The 2% information is very findable. And boy howdy, if I had had that information back in 2005, I would've grilled my oncologist without mercy until I had answers that convinced me I'd be getting wayyyyyyyyyyyyyyyyyyyyyyyyy more benefit than some measly 2 f*#&^*g percent.
editing to add: MBJ, yes, you just reminded me that I've also read that chemo is not so effective for er/pr+ cases, which was me, and I've read the same comment about it not being so effective on lobular either. Double miss for me, and yet chemo was the first thing I went through. ....oh well, I'm actually glad in a way that I didn't have surgery first. Six months of chemo gave me time to find stellar surgeons in new orleans where I had the best medical experience of my life. I'm just harping on this 2% thing in hopes that someone else down the line might balk enough to skirt a treatment that provides precious little benefit and avoid the risk of heart damage, neuropathy, and the host of other side effects chemo can bring. Meanwhile, I'm truly glad to know that it's genuinely beneficial for triple negs.
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Althea, Here is the original "2%" study and a transcript for a quality radio interview about it.
The contribution of cytotoxic chemotherapy to 5-year survival in adult malignancies.
http://www.ncbi.nlm.nih.gov/pubmed/15630849
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An Australian study suggests that the benefits of chemotherapy have been over-sold. Norman Swan talks to Associate Professor Graeme Morgan who's a radiotherapist at Royal North Shore Hospital in Sydney and to Professor Michael Boyer who's Head of Medical Oncology at the Sydney Cancer Centre, Royal Prince Alfred Hospital.
http://www.abc.net.au/rn/healthreport/stories/2005/1348333.htm
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I have saved a few more studies and articles relating to this subject, most of which claim a benefit from chemo, however, here's a possible reason why chemo seems to help.
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New England Journal Of Medicine: Interruption Of Menstrual Cycle By Chemotherapy Associated With Improved Survival In Early Breast Cancer
http://www.medicalnewstoday.com/articles/190837.php
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There could be many reasons why women having chemo fare better in some studies, other than the chemo. But I keep my mind open to all possibilities as I don't want to fall into the trap of seeing things too simplistically. There may be a flaw in the "2%" study that has never been exposed. Certainly oncologists pass it off as rubbish as it goes against so many other studies' conclusions. Plus there's that compelling promise of shrinking tumours that fools everyone into thinking it's ridding the body of all cancer. Chemo is important for those like MBJ who need to shrink the tumour to make it operable, and for IBC also.
I don't think the truth will ever be known as I suspect one of the vaccines or some other treatment or cure will put an end to all other treatments.
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Now I've read through those studies and articles again I can see them with a new perspective. The study was for five year survival rates. Not too many women die within five years after surgery so it's pretty meaningless. What a shame they didn't repeat the study for ten year disease free which would be much more relevant for both BC and prostate cancer which are long term illnesses.
Now here's a study I discovered hidden in last year's ASCO where they revisited an old study comparing chemo and tamoxifen with tam only. They followed up 20 years later and found no survival benefit for chemo, in fact tam alone had better survival rates than when combined with chemo, but bear in mind they were older chemo's. No taxol. They used CMF and epirubicin. These were women with positive nodes so it wasn't a light weight study where 90% would survive anyway.
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Chemotherapy (CT) versus tamoxifen (T) versus chemoterapy plus tamoxifen (CTT) in patients with node-positive (N+), estrogen receptor-positive (ER+) breast cancer (bca): Very late results of an Italian multicentric trial.
http://www.asco.org/ascov2/Meetings/Abstracts?&vmview=abst_detail_view&confID=74&abstractID=49713
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If the link doesn't work, try googling the full title, that's how I found it.
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Not exactly what I wanted to read heading into chemo for the second time this morning
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Sorry Merilee, I have plenty saying that chemo is better than not. I just try to look at all the evidence. Whatever feels right for you, go with it, believe in it and embrace it. I think that belief counts for more than these vague statistics.
And I feel certain that the long term treatment or cure is only a few years away.
I hope all goes well.
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Fifteen years ago I remember sitting in a Physiology class discussing chemo. I remember the prof said, chemo would be like the blood letting of our century. There were such great hopes about mutating virus and other cells to attack cancer. This convo just reminded me of that! Not sure why I didn't think of it when I got my dx, but I dodged the chemo bullet with my oncotype, only to find now that every woman I can find with my type of cancer had a BMX where I just had LX. It's all so confusing and frustrating. I did read an article not too long ago about how "cure" money is going to genetics research rather than to a cure. I've disco'd some of this myself after meeting with a genetic counselor and a genetic MO, where they tried to fit my symptoms and issues into a free genetic research program. Not the standard BRCA, but for Cowden's. They had me sign all of these forms for participation, and then they were supposed to get back to me...it's been a month and I've had no response.
I guess the summary of my rambling is...no matter what the treatment, the money is what dictates the research to support or crumble the tx foundations. I think that leaves us as the patients to go with our gut, and to use our will and belief systems to help us over these never ending hurdles and disputes. I think our INTENTION it what creates the best cure.
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Althea and Sheila-Those were very compelling studies you posted. This is the kind of info that we need to have so we can make better educated decisions. Sadly, we find out about all this stuff later, because at the time we are too afraid to speak out. There is a lot I regret saying yes to, but the one thing I will always be thankful is that I did not let them press the chemo issue with me. Two of my docs wanted to do it "as insurance" even though it was not warranted for an early stage tumor like mine. It was quite large, but I had shrink it 2 cm on my own, with a sugar free, mostly vegan diet in the weeks between dx and surgery. I knew they were going to insist on chemo if the final tumor was 2 cm and I was bound and determined that that would not happen, so I did everything I could to eat healthy. I had no clue what I was doing at the time. I was just going in instinct. I was lucky that my surgeon had a conference and a vacation scheduled, so I had some time. The fact that the tumor was down to 1.6 when it was taken out, got me thinking that nutrition was good medicine, and I have looked for alternatives and grew confident listening to the voices within. My doctor just kept telling me that my hair will grow back. It wasn't about the hair. It was about the idea of putting poison in my body that was freaking me out. She acted like it was no big deal. Easy for her to say. I have not been back to her since she lectured me for not taking arimidex. I got so sick of being treated like I was stupid. Someday I am going to get the nerve to walk over there and give her a piece of my mind. If she had not dismissed the chronic inflammation in my chest I was going to her for three years before my bc dx, that I kept telling her was caused by inhaling chlorine, perhaps I would have never developed the disease. All she did was send me for more toxic test after test, adding more toxins to my already overchlorinated body. I knew something was terribly wrong. Eventually, I found the lump myself, even though all the mammos and xrays she was sending me for showed nothing.
Listen to those little whispers. They are our angels.
I wish you all would post those articles in the breast friends group on my website so that we will have it for easy reference in the future. I have a discussion started for research where we can start putting articles. My hope is that it will get others to do more research and have a better educated basis for making these complicated decisions. This is info that I wish I had had access to. Thanks for helping.
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Hi Merilee,
I'm so sorry you're dealing with this again. The "chemo 2% effectiveness study" has been discussed many times, and it's quite often misinterpreted/misused, and there are lots of flaws with the study and its conclusions.
There's a helpful discussion of the facts HERE that may help to clarify the issues with the study. Best of luck with your treatment!
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Girl Friday-I took physiology too, from a most amazing and brilliant doctor, not a typical professor. He spent a lot of time talking about the effects of steroids on athletes (the class was for pre-med and PE majors like me). When I was being coerced into arimidex, I found out that body builders were using it to bulk up. Then I went back to what I remember my prof telling us about how bad steroids were for the heart and the brain (remember that heart attack that the governator had?). That was it for me. I had been taking the drug for only a few days, but my brains was becoming a fuzz ball. I tossed the pills and never looked back. Cancer may be the number two killer, but heart disease is number one. I think I will go for second place this time.
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My biopsy showed approx 2cm tumor(however I assume that is not 100% accurate? ).....when I had my BMX 3 weeks later my tumor was 1.5cm. From DX to surgery, I also went kind of crazy with my diet. Always eat healthy for the most part, low sugar, green smoothies, etc but...went all out. NO sugar, LOTS of greens and vegis. Was completely strict. I wonder??? I had originally thought that maybe since the first was just a biopsy and ultrasound they guessed at size from those two things...but maybe it shrunk? Or maybe not, maybe those two things were not as accurate but it does make you think.
Mine did not show up on mammograms either. But the whole diet thing has me wondering.....I told my Onc how did this happen to me? I'm like the "natural" girl doing all things healthy for years. A lot of good it did me....she said, no, don't discount that, it probably did more then you realize. Maybe she is right...maybe it kept it at bay somewhat. I felt the tumor two years before I was ultimately DX. So who knows....but definitely interesting!
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GirlFriday, your comment from 15 years ago made me flash back on something else that may be pertinent to this chemotherapy conversation. The night before my mast (which was 2008), I was at an on-campus inn @ UCLA, where they have a medical channel. And a closed circuit video I briefly caught was a presentation by a professor of medicine explaining to students that chemotherapy training as little as 5 years ago was a different world from the biomolecular, targeted treatment they were studying.
Sheila, interesting observation about the 5 years vs. potential 10 year stat.
I also recall someone posting here on BCO a recent study that showed an average increased life expectancy of 8 years for bc (and I think that was all bc patients) due to the newer tx protocols. I'll try to find that when I have more time.
I'm also going to go back and review an on-line video by my onc @ UCLA in which she goes over the hx of chemo for bc, and reviews the improved outcomes over the years as chemo regimens evolve. I remember that the earlier ones, especially the combos, had no rhyme or reason and very little long-range improved outcome; but I thought the most recent ones, like TC, which is what I had, showed a much better outcome -- although the data would still be early.
Good luck, Merilee! I'm so sorry you're facing chemo again, but a lot has evolved since that 2004 study. Which one are you getting this time? Deanna
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Tc 3 weeks apart 4x. Im in ths chair right now
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Althea: I spent my time druing chemo researching the best procedures and doctors, too! It gave me time to fight BC and fight for the best results.
Merilee: You have to go into chemo with the attitude that chemo is going to do it's job by killing the cancer that is growing in you. The hope is that in the future chemo will be needed less and less. I am so grateful that this isn't the chemo of 20 years ago! Many of us are thriving and surviving because they are doing less. I had TC 3 weeks apart 6 x. I had infusions of vitamin C every 4th day after chemo to keep my strength. I took Mag07 to eliminate the chemo waste from my body which worked better for the constipation. I am now doing a program to get my strength back. Hugs to you and we are all here to help you through this!!!
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Merilee, that's what I had (TCx4). I'm going to PM you quickly about something that's important to do w/that regimen. (((Hugs)))
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Merilee, having confidence in whatever treatment choice you make is hugely important. And truly, we are obliged to choose from what we have available at this time. My rant about the 2% rate was largely in reference to what the future may hold for people like us down the line. On the other hand, if it resonates with you, listen to your instincts and grill your doctor until you have answers that satisfy you. Regardless of what any medical professional might dismiss, the placebo effect is very real and it's essential for you to have a strong belief that your chemo is going to kick that cancer to the curb for the final time. I imagine there's threads elsewhere about guided imagery, creative visualization. That information would be very helpful for you now.
ps to mbj, where and how did you find access to vitamin c infusions?
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althea: I go to Dr. Galitzer here in California. He was the key to all of my treatments and dr's and is Suzanne Somer's dr. He got me one of the best Onc's in town (his wife and daughter go to him) and this Onc found me my BC & PS. He is an integrative MD.
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I am using guided imagery to kick the cancer's ass as we speak. I also have been offered the vitc infusion but my onc says it will interfere with my next treatment
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Merilee: That is an excellent suggestion by Althea for guided imagery. I found a wonderful CD for my surgery but it's great for overall health and would work for you to listen to it while undergoing chemo by Peggy Huddleston: http://www.healfaster.com/ Amazing CD.
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MBJ, you are so lucky to have access to such an awesome doctor! ...and since you had both chemo and vitamin C infusions, I'd like to suggest that it's very possible the vitamin c gave you the most benefit. Norman Cousens, author of Anatomy of an Illness, healed himself from a serious illness back in the 60s using vitamin C. Raymond Francis, author of Never Be Sick Again, also healed himself from a life threatening illness using vitamin C. A farmer in New Zealand was also at death's door until vitamin C infusions saved his life. This link goes to a news video about the farmer:
http://www.3news.co.nz/Living-Proof-Vitamin-C---Miracle-Cure/tabid/371/articleID/171328/Default.aspx0 -
Althea: I am using Vit C to heal myself from Adrenal Fatigue! I am following the protocol of www.drlam.com. It's all about getting your vitamin C & B levels (and D levels for us with BC) levels up slowly over a couple months period of time in many different forms of pills, powder, liquids plus other supplements as support. It seems to be helping my energy levels and I also noticed yesterday I was able to maintain a 98.6 body temp throughout the day, something I haven't been able to do at all for a very long time.
I would be more then happy to share Dr. Lam's protocol for those suffering from Adrenal Fatigue.
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Althea, I agree with lots of what you have said in your posts. I do want to note that the link that Sheila provided to the 2% 5-year survival is for ALL malignancies lumped together. BC is actually (theoretically) more curable than most cancers, so there may be more of a role for chemo in BC than in others. Quite honestly, if I had almost any other type of cancer I would have DEFINITELY NOT chosen chemo, but felt a little pressured into it with BC. I was reluctant from the start, and am certainly unhappy with some decreased quality of life from neuropathy that may or may not resolve, but I do know that the PET scan done after treatment showed complete resolution of nodal mets (I refused axillary node sampling or removal at the time of surgery, the surgeon got clear margins, and lymph node removal does not improve survival), so overall, I think I chose correctly for myself, and try not to second-guess myself too often. So for those of you considering chemo, ask LOTS of questions and do what seems right for you in your individual circumstance (don't just consider the statistics, because they are based on populations, NOT individuals!), and for those of you who have already gone through it, be kind to yourselves and try not to do the coulda-woulda-shoulda. BC is just a royal pain in the you-know-what!!!
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I'm curious...since you've mentioned Suzane Somers...what about Crazy Sexy Cancer? Are these media blitzed books, or are they helpful?
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GirlFriday: Suzane Somers had nothing to do with my choice of dr. I was recommended by a client to go see him. Know also that although Suzanne Somers writes about natural treatments and "cures" she had standard of care: chemo, rads, surgery. Also, her dr. recommended I have chemo and surgery.
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Interesting thing about Vitamin C. My nutritionist put me on Vitamin C to help flush out excess estrogens and to bolster my immune system. I started taking a powder buffered drink form of Vitamin C (approx 1700 mg daily) just recently. He suggested I take it to help with my allergies. Well, as it turns out, it helps bolster immunity for a lot of things, as we recently had family visit. 3 out of 4 in their family came down with a spring cold/stomach bug. The only one in my immediate family who came down with it? My 3 yr old, who happens to be the only one not taking Vitamin C!!
Just one year ago, I would have been the first one "down" after their visit. I caught EVERY SINGLE bug my kids brought home for the past 6 years. I haven't even had a sore throat or sniffle this year. I attribute it to the nutritional changes and supplementation I've started taking. If I had the opportunity to take Vitamin C infusions, I would certainly do so.......
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This news story actually finally got my DH to ask whether we should try to go vegetarian (something I never thought he would consider). During the past couple months, we keep getting bad chicken. We buy organic, expensive brands. The dates were fine. When we open them, they just reek and we threw them out. I became vegetarian for about 10 years back in 1969. Then I felt I needed more animal protein and started eating chicken and fish again. Now I feel like I am dealing with toxic waste when I cook chicken. I am truly worried about our food. The egg disaster last summer, now this. What is safe to eat?
April 15, 2011
Drug-resistant bacteria found in half of U.S. meat
Study finds Staphylococcus aureus in 47% of beef, pork and poultry samples in U.S. supermarkets.http://www.cbsnews.com/stories/2011/04/15/health/main20054211.shtml
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Designermom: I guess it's more importatnt to know where it's coming from. I am now buying my meat from an organic co-op and the quality is night and day from the organic I was buying at Whole Foods or Trader Joes. I am bettting they were literally butchered the day before it was so fresh. Maybe try a farmers market or a local co-op instead.
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stage 1 grade 2 BMX, no lymph involvement, clear margins, ER+, HR2 neg. My onc recommends TCx4 and tamoxifen. I don't want either, but can handle tamoxifen. My oncotype were 17, 18, and 24. Intermediate w/ no proven results w/chemo. i am a vegetarian (almost 2 yrs) and physically and spiritually fit, and willing to try anything through diet and nutrition to maximize my odds. Are (most of) you researching and adding/subtrcting food and supplements on your own or seeing naturopath. i have 2nd opinion onc tomorrow and am trying to get appy w/ naturo. Is it necessary? We do wheat grass, superfoods, increased raw foods, goji, cacao, coconut water, B12 etc. Can I do this on my own???
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MBJ: Thank you! That's what I've always wondered. There's just so much out there to weed through. But what about Crazy Sexy Cancer? I started to watch that film in October...I had already found the lump, and I had ignored it for two months. I don't think I can do in a diet, what she has done, but is there any credence to the alkaline/acid balance theory?
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