Why Im Not Doing Chemo
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Member of the club,
I understand your concern about surgical treatments. It is tough to do comparisons. Do you have a reliable study indicating whether lifespan is longer or shorter with the use of Zoladex instead of surgical removal of the ovaries?
My question is, is lifespan shorter either way because of the loss of ovarian function that provides the estrogen that slows aging? Zoladex hasn't been used long enough yet to compare lifespans.
I wish I knew what all of the effects of estrogen deprivation by either method are vs what the effects of the chemotherapy are. Most of the people posting have not yet had many years to experience all the SE's of treatment. Very, very few of the people who post on breast cancer forums are over 5 years out from treatment, not necessarily because there are fewer of them who have survived but also because many never understood their cancer or treatment enough to discuss it and many have put cancer behind them for one reason or another.
I do know that at 10 years out from treatment without recurrence, I'm losing my teeth now at age 60 and the recommendation is implants at a cost of around $16,000 to $18,000. It could be due to estrogen deprivation and/or it could be due to the unknowns of chemotherapy -- either way, dental info indicates I am younger than average to be losing so many teeth all at once. That is just one repercussion of the choices I have made. I have nothing left of the sensuality I once had except memories. I did chemo and 1 3/4 yrs for IDC and my older sister chose not to when she had IDC; she has had 10 more years of sensuality without painful intercourse than I have had because of her choices, and she still has most of her teeth even though she is 4 years older than I am.
A.A.
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hillck,
We would need a statement directly from Dr. Slamon giving the basis (evidence) for that conclusion, and so far I don't think he has made that statement. There are now the beginnings of trials being done to see what the use of trastuzumab without chemo can do, such as trastuzumab being given while the immune system is still intact prior to surgery (neoadjuvant), to be followed with chemotherapy; and trastuzumab being given alone for those whose immune systems are intact and who are over 60 years of age at time of diagnosis.
Is trastuzumab actually more effective due to downregulation by chemo, or is trastuzumab more effective with an intact immune system? Do we know? I look forward to the results of the trials using trastuzumab alone.
A.A.
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AlaskaAngel,
Is there a differnce between killing your overies and having them surgically removed? They both destroy estrogen production. It's all so simple yet we can complicate things. Menapause has depleated my estrogen enough.
I'm so sorry you lost your mojo. I gave mine up years ago. I'm not willing to give up what little estrogen I have left. If I thought HRT was a good idea I would do it. I don't know. YET.
Maureen..............................................PS If you write a book, I would read it.
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evebarry,
Because at the time of my treatment 10 years ago there was far less support and information available to me, and because I was at such a disadvantage in making sense out of it all, I can only wish in hindsight that I had been more stubbornly insistent on being given a thorough understanding of how and why each treatment that is recommended "works". I support your quest to know.
I believe that early stage HER2 positive bc patients in particular have been unfortunately kept in the dark. In part I can understand some of the logic that may have led to that result. I don't claim to know for sure, but this is my interpretation.
The trastuzumab trials that were done don't provide much in the way of documentation with either trastuzumab and/or chemotherapy for those diagnosed with early stage bc because the studies didn't include those patients. Why didn't they include them? It may have been because of the unknown risks of trastuzumab, especially its cardiac effects. It may have been because of the unknowns of the cumulative toxicities in creating the combination of trastuzumab AND chemotherapy. But it also happened because when you do a trial that includes a group of patients with the greatest likelihood of having fewer recurrences, the success rate is less spectacular. This is especially true considering that the largest group of breast cancer patients is those who have early stage bc, because of earlier detection methods that are more common nowadays. While deliberately not including early stage patients seems (and probably is) probably somewhat questionable since it sort of bends the results to appear more favorably, IMHO it at least did the trick in getting approval of a less toxic drug that has helped those at higher stages to have access to better treatment than the pretty dismal use of chemotherapy alone for them. So I do think not including early stage patients was probably the only way to go.
I don't agree with the subsequent 10-year delay in offering patients the opportunity to chose to do trastuzumab without chemotherapy. To me this is inexcusable. We are asked to sign consents for chemotherapy with no promised outcome, including possible adverse outcomes. We have the results of patients treated with trastuzumab (with chemotherapy) as far back as the end of the 1990's so we have quite a bit of information on any adverse effects from the trastuzumab. We do know what many of the adverse effects of chemotherapy are, many of which oncologists have been in denial about for decades--including neuropathies, chemobrain, the destruction of our bone system, etc.
A friend of mine was more fortunate than I was at time of diagnosis in that she had to deal with a family member's cancer and treatment before being diagnosed herself. She too uses her own brain and logic to analyze the possibilities rather than falling for things such as "chemo with trastuzumab is more effective" with the automatic assumption that what is meant is that "chemotherapy with trastuzumab is more effective than trastuzumab alone", without understanding that what is actually being said is that "chemotherapy with trastuzumab is more effective than chemotherapy alone".
My friend is now 5+ years out from her choice and recurrence-free. She did trastuzumab followed by 3 years of an aromatase inhibitor, and eats a healthy diet and exercises consistently.
A.A.
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evebarry,
As susieq58 says, so far there is no known reliable test that can be used for early stage bc to detect mets. There are some that are used for higher stage patients.
There are various marker tests that are reliable for some and not as reliable for others. For me, so far the CA 15-3 or alternatively the CA 27.29 have been reliable. I just received current results and mine has not only stayed low, it has dropped 1 point.
I personally also favor doing additional testing for inflammation by having the CRP done but that is just my own "independent" conclusion.
The CEA can also be done to monitor. It is not specific to bc but is more general.
A.A.
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Chef127,
That is my question too. I see chemo as being more destructive of the body as a whole (immune system and entire hormonal system), and surgical removal as being less so (only affecting the part of the hormonal system that is offered by the ovaries and not the multiple parts of the hormonal system throughout the body, and also not affecting the immune system).
A.A.
P.S. Thank you for the special compliment. I think I probably have written the equivalent of at least the first chapter sometimes, and sometimes am a bit wordy!
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hillck,
Correct, the study being done for those over age 60 is because of comorbidities, etc., but what I am saying is that study still should provide some relevant info for early stage bc for the use of trastuzumab alone.
In answer to your question, am I misinterpreting this information from this link?:
http://clinicaltrials.gov/ct2/show/NCT00455039?term=neoadjuvant+trastuzumab&rank=8
"GW572016 is a new and promising dual tyrosine kinase inhibitor against HER1/2. Hundreds of patients were treated in phase I and II studies world-wide and results indicate that this reversible, oral small molecule is generally well-tolerated. Studies of neoadjuvant Trastuzumab indicate that HER2 interference leads to significant tumor regression even after 3 weeks of monotherapy. We aim to extend these findings with a novel agent, GW572016 that may be more effective, especially from its in vitro data, and to discover the true response rate to inhibiting HER1/2 signal transduction in breast cancer patients."
I agree with Dr. Slamon -- bc is usually complicated and not simple with only one path, in part because it can continue to mutate apparently. I believe his forceful emphasis of TCH is targeted primarily toward reducing the use of Adriamycin for all stages, but that chemo is less useful for early stage even if he hasn't said so directly while just trying to deal with the Adriamycin/cardiac issue.
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hillck,
The quote was for "studies", not "study".
They left your tumor and your DCIS in so that you could watch it all be reduced in size?
For better or for worse, I am a very basic scientist, so to speak, and unlike the research studies that do not consider the need to analyze all components of each study as variables, I still think that differences such as support drugs are variables in terms of the conclusions reached with studies. I still think the effect of steroids alone, in reducing the immune response of inflammation induced by the chemotherapy, if applied to a cancer that may be vulnerable to a reduction in inflammation from the steroid application, that is greater than the inflammation that existed prior to chemotherapy induction, could actually be the primary agent in preventing recurrence rather than the chemotherapy being given along with it. But what do I, a mere cancer patient, know in comparison to the scientists who don't always see the forest for the trees?
A.A.
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This is very interesting. I am on Herceptin, but I started it late, well after chemo because my onc didn't order the FISH test when I was diagnosed. Turns out I was Her2+ after all and should have been on the Herceptin since February. I finished ACT in March and started Herceptin in May. I am always encouraged by reports that show the utility of getting Herceptin alone, although I don't think that I can say I am having monotherapy since I also had chemo and had a good response to it.
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I love hearing stories about how tumours shrink when chemo is given before surgery. Shows it works doesn't it.
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Hello Evebarry,
I truly respect your choice. In fact, now that I have gone the whole chemo route, I honestly would think long and hard before ever doing it again. After putting all those toxins in my body, the response of my tumor to chemo was deemed, "incomplete" or "moderate". Next, I allowed my body to be inundated by radiation beams. I just read the recent report about radiation and effects on heart that the moderators shared with us - I had left breast radiation - not once did one of the med professionals warm me about the possible effects - I read about them on my own, but was so overwhelmed, I went with it and let others make decisions for me.
I am not certain how I will react if I have a recurrence, but at this time, I seriously believe that I will think this way: I went the conventional route the first time, so I do not have to feel "guilty" for not trying that route - (not that anyone should feel guilty - but so many people told me I had to do it for my family, if not for myself). If I have a recurrence, it will hopefully be in an area where I can have surgery to have a tumor removed. If it is my other breast, I will demand a bi-lateral mx. I allowed myself to be persuaded to have a lumpectomy, that took half my breast anyway, chemo, and rads,- I will not do that again.
I realize that stats are not always the way to go in making decisions, but I recently went to the cancer math calculator and was told that all the crap I went through only statistically increased my lifespan 3,7 years!!! I know that any time is precious, but right now, when I am trying to recover from the dibilitating effects of rads, it just does not seem like 3.7 years was worth it for all the damage I did to my body, not to mention the 9 months of my life I have already given up for treatment.
I definitely have a new outlook - I honestly do not think about my future - I get up each day, set goals and enjoy every minute I can. I am thankful for a good day and try again for a better one the next day if it was not good.
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My 3 cm tumor shrunk by half, which allowed me to have a lumpectomy. The lumpectomy still, however, took half of my breast. Also, even though the chemo shrunk the tumor, there were still active cancer cells in the removed tumor, so my response to chemo was deemed, "incomplete". So, although the chemo worked to shrink the tumor, it may have not done much to kill any cancer cells that remain in my body.....
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,,,,sorry - did not get to the point of my previous post - was deep in thought....what I am saying is that perhaps I should have just had a mx and skipped the chemo....
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You know, I started with a 5cm tumor. I had ACT. Had I gotten Herceptin at the right time, I may have gotten much closer to a complete response. As it was, I had 1.2cm left at surgery - almost an 80% reduction. In addition, it always shrank, even in the three weeks between chemo and surgery. (I was doing an ultrasound study, so they were measuring me every two weeks.) So I feel confident that, even though I didn't have a PCR, the chemo (and now Herceptin) were and are very effective on any cancer cells that may be floating around in my body.
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sweetbean - so glad it worked for you and wish you the very best - my darn triple negative status does not allow me the benefits of Herceptin, but I am still hoping there are no stray cancer cells floating around. I was "invited" to join a research study in which I take 16 weeks of oral chemo, but I have declined as similar European studies have yielded no significant improvement in recurrence rates, so why poision my body more.....
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...just reflecting on the day and my time on this and other threads. I did drop-in now and then to read different topics on this thread, but never actually thought I would write on the thread - I was "conventional" in treatment ideas, all the way - "bring on the chemicals" was my mantra - but after treatment, my thoughts are definitely changing. I am still very much in favor of surgery - getting out whatever I can that serves as a host to the cancer cells, but for now, I am done with chemicals and being irradiated. I realize my thoughts may change if presented with a do it or die situation, but there are so many gray areas in cancer treatment - so many individual choices - that makes it so difficult - no definite answers, no definite cures.....
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I love what Anadagram said, although she is triple negative, she has a good perspective. Her choice to live life, every good day a gift. Since I've had the recent mx, I realize I'm miss the good days when you don't hurt. The idea of feeling ill due to cancer treatment does not appeal to me. I don't know how so many women choose to do it. For me, I hope the mx took care of the cancer and all this will soon be over.
Hillck...you have not hyjacked this tread. The discussion of herceptin/chemo is relevant to the question posed. I welcome an intelligent discussion, especially when it's done respectfully. It is very interesting although sometimes a little above my head.
Did I miss this but have there been studies done with herceptin/chemo for women 60 + ?
I also know that surgery alone cures most stage 1 cancers. It's a gamble for sure for those over 60-to do more especially knowing the risks of strokes, heart failure and broken hips could be side effects that could be worse than the cancer dx. Hard choices.
I've learned from all this that I want to remain positive, eat well, and enjoy the life I have left.
And, I will try herceptin if it doesn't cause horrible side effects.
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"The idea of feeling ill due to cancer treatment does not appeal to me"
me neither..
but i'm not special.. i don't have the luxury of an early, light diagnosis or nonlooming death..
i'm just another woman with stage 4.
in all logic and fairness.. who in their right mind would find feeling ill to cancer appealing?
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Sometimes, reading this thread, I feel I am in an alternate universe. Temporarily feeling ill to survive a life threatening disease = unacceptable. I don't get it. But that's just me.
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IMHO, no stage or diagnosis of BC is "a luxury"......
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Stage IV is like looking down the barrel of a gun. The trigger is cocked... not to be dramatic... ahem... but I intend to buy as much time as I possibly can! Chemo is the strongest weapon we've got. And it's one of the reasons I'm alive today. Alive and NED.
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Forgive me if I offended anyone here...that was not my intent. Lately, the pain I now am in due to a mastectomy/reconstruction and living on pain meds is not easy for me either. Because I don't want another dx in the right breast I had to have this recent mx. It's the last thing I wanted to do. I know for me, my choice, I choose not to do anything more that is going to make me feel like this...unless it's time for me to leave planet earth. I don't handle pain well, maybe because of my RSD dx.
I respect those of you who bravely go through treatments that cause you to feel ill so that you have more time to live. I suppose I'm not as strong as you are. I pray for your healing and hope the best for you.
The whole cancer dx for me has made me appreciate life more. And for those of you who come to this thread, remember this is an alternative thread looking for alternative ways to treat cancer..and my reasons for choosing otherwise. Best to all of you.
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yorkie,
you DON'T get it. so WHY are you here? If your not comfortable in this "alternate universe" why do you subject yourself to it. I'm here to learn, and I have. are you on some sort of a crusade to sway people to your ideas and belief? IT'S NOT WORKING. take it to your chemolounge and embrace your poison. some of us want NOTHING to do with it.
I am tired of ignorant people pushing their s--t. I did not hear anyone here trying to sway you or any others to try alternate or natural MEDICINE. Those of us who choose alt, have just as much of a chance to survive as those of you who choose conventional routes.
So, Put That In Your Pipe and Smoke It!
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evebarry - I feel the same way about this thread. I used to read the thread, but did not comment as I did not agree or understand much of it. Now that I am connecting more with the thread, I feel more comfortable joining. There are many threads I do not read as I feel I would not connect with them - For example, I do not read Stage IV threads as I am not stage IV. I do not read hormone therapy threads as I am triple negative. We should feel free to share our experiences and feelings, but why would anyone come to the alternative thread if they feel that conventional treatment is the way to go?
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chef, I'm not doing chemo, btw. Doctors orders. I THOUGHT this board allowed free speech. Silly me.
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yorkiemom: The board does allow free speech, but with respect and compassion for others beliefs.
Chef - As a previous non-alternative-supporter, I get it now - chemo sucks and as far as the benefits it gave me, I wish I had never done it and never will again. At first I would have felt guilty for not doing it - now I feel so guilty FOR doing it. I understand why some people support chemo and I sincerely hope it helps them. As for me, I just recinded my participation in a research project in which I would take oral chemo. Even my adult children, who supported my decision to do IV chemo, were very upset that I would take oral chemo, as part of a research study that has previously failed to accomplish preventing recurrence,
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Evebarry,
I can answer your question. What specific chemo did your oncologist recommend? Was it TAC?
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There are some lovely ladies who are Stage IV who have done much research on alternative methods. I follow them regularly, as I want a FULL ARSENAL of both conventional and alternative. In my particular case, I was too far advanced at diagnosis for the alternative methods to make a difference. Now that I'm NED, I am particularly interested in other methods to keep me here as long as possible. That is why I come to the alternative forum. Given the choice, I certainly would choose not to do chemo again either! But many of us at Stage IV have NO CHOICE. It's life or death.
evebarry, this is your thread and I certainly respect your opinion. And I'm sorry that you're experiencing such pain. Wishing you health in the New Year!
Rose.
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BC treatment is such a crapshoot - I could not believe that my research has lead me to the conclusion that all the torture I put my body through with rads and chemo POSSIBLY added only 3.7 years to my life expectancy - not including the 9 months of it I lost during treatment. I know that every year is precious, but the past 9 months have been hell with conventional treatment.
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,,,,,not to mention the "Breaking News" topic I have viewed all day - "Breast Irradiation Tied to Coronary Stenosis"- pisses me off every time I see it. I bet my ancient 17 year old rad machine, that broke down every other week is most likely not state-of-the-art! What good will 3.7 extra years of life be if my heart is a mess?
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