Why Im Not Doing Chemo
Comments
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AA...please refrain from making sweeping statements like:
"As mentioned, some very worthy trials like ESTEEM don't fill, often because patients at that age usually turn down standard recommended treatment anyway."
The authors of the article very eloquently explain WHY the researchers could not get the required number of people to join and they even more eloquently explain the limitations of all of the trials. And, the authors point out VERY clearly that the 70 and OVER population are more likely to have co-morbidities that might interfere with successful treatment. People don't necessarily thumb their noses at standard treatment. Instead, they're wisely prevented from doing it. And again, that's one of the reason why the researchers have a difficult time of finding people to join the trials and that's one of the reasons why there is limited research to guide clinicians with their patients.
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VR, I know you want the best for other patients, and so do we all. The standard therapies are still usually recommended to older patients who have comorbidities and they are not "prevented" from doing them if they wish. Depending on their medical provider's individual perceptions about the value of standard therapy, they are counseled about the problems involved with their comorbidities.
A.A.
P.S. What we are tussling over here I think is that treatment is still so subjective, and not black or white even though we wish it was. These are very difficult decisions when it comes to what to recommend to which patients, and what to choose to do, or not do, and why.
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sweetbean wrote:
Do you know most of the clinical trial patients are children???? This is because kids' cancers receive the least amount of funding - 3%! Once I am done with Herceptin, I will DEFINITELY enroll in a clinical trial - no way I am allowing some poor little 4 year old to blaze the trail alone. "
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Where in the heck did you get this information? the other universe?
Honestly, I am impressed that you would volunteer to participate in a clinical trial tho. it's actually very noble! One must be 18 to be involved in a trial without consent of a parent. Bless the poor children who have no other option... their parents signing papers with trembling fingers, praying that anything .. just anything will work for their babies. Children are more involved in the decision making process now, if they are of the age of reason. that's good.
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I'm not in my seventies, but I know women who are in the 70's and up, who are probably in better shape than some 50 year olds. They look very good for their age, and are still active. Due to exercise, supplements and more attention to health the seventies might be what we considered years ago 60's. I have a dear friend, who is probably 79 now. She had colon cancer about 3 years ago...stage IIb...in her nodes as well. She did surgery only and changed her diet. She hasn't had a recurrence, and is living a active jet set life style. She plays golf, and is living life to the fullest. Her mind is a keen as ever. Her doctor recommended chemo and etc. Due to age she declined. She felt I lived a great life so far and I want to end it that way. She realized that she's older and chemo would be hard on her aging body. She said she's seen too many die suffering from treatment...not her choice to go that way.
Even for my age, I'm not sure I would go on a trial treatment. I've lived a great life like my friend. I don't do sick well. I won't do anything that will lessen my quality of life. I don't want to deal with joint pain, and pain period! I respect those who make those hard choices. But, for those who have gone past menapause, It is my opinion that aging problems are enough to deal with.
Those of you who are younger dx with cancer, it's your call. I just hate to see seniors being pushed or even encouraged into harsh treatments. And most, are dx after 60...for me it was 62....two yrs. after menapause and premaritan.
Although, as said before, I do believe no matter what age, cut the bad spot out of the apple.
By the way...Kaara didn't send me the link...someone else sent it to me and said that Kaara and I might find it interesting.
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Eve,
I've stayed out of the discussion of trials, etc. here because it's way beyond the scope of my understanding!
But something I've thought about a lot with your particular scenario and your reluctance to endure much, if any, side effects from treatment. I totally understand that and the issues of other medical problems and co-morbidities you deal with, such as RSD. There's something I've wanted to point out, however, and I've often thought about saying this, but wasn't sure how to do so without making it seem too disrespectful. I guess I'll say it by telling you of an experience I had during a re-hospitalization after my mastectomy for an infection. There was a woman lying in the bed next to me in my hospital room, and she had chosen to ignore the cancer in her breast. And it wasn't pretty, and it seemed quite tortuous, and that night confirmed that I had done the right thing by having a mastectomy. Much as I didn't want to lose my breast, I also realized that it was the lesser of two evils. Dealing and dying with cancer is even worse, even more painful, even more tortuous. I'm sorry if I offend anyone, but honestly, it can be true agony.
So, I guess my hope would be that perhaps you would also be able to see the other side of not pursuing certain treatments during your journey. These are of course all your decisions, it's your body, and you know what's best for it, and I'm not advocating one treatment over another. I'm just pointing out that you might be concerned about the side effects of one treatment or another, but at the same time, I think it's important to also realize that sometimes not dealing with things doesn't mean just saying good-bye to life and sailing off into the sunset. That sail can be long and tortuous and have a lot more side effects than a particular treatment.
Just my thoughts and something I've wanted to say for a long time. I'm apologize if I've offended anyone. No one wants to be dealing with cancer, and no one wants to make these absurd decisions, but either way isn't pretty, either dealing with the cancer, or not dealing with the cancer.
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Digger, my question with the story you shared why didn't the hospital provide pain meds. Everyone I've known dying were given heavy pain meds and died easily no matter what choice they made.
I've done the number 1 cancer conventional treatment each time, surgery and this last time a mx. For DCIS I had nodes removed. I don't believe in completely ignoring cancer either. The first year after I was told I was cancer free, and I was told that the odds were small that I would have a recurrence. I didn't change anything...just thought I was lucky. After my second dx, I've been on a cancer journey to change my diet, and to find why my body is making cancer cells. Because at the second bc dx I learned I was high risk especially in the right breast, but uninsured, I made sure I had my 6 month screening.
So...I have been proactive in taking the bad spot out of the apple.
As for stories, I know of a woman who died last June of cancer, who had no idea that she had stage IV cancer. She had a very active year, directing a major musical. The only thing she noticed was being unusally tired. Two months after dx she died. She was on pain meds toward the end, and her family said she died peacefully, without pain. On the other hand, I know of another woman, the best friend of a best friend, who died last July or August? She was dx a few years back with stage IIb or IIIa idc (not sure of the her2 factor). She was on chemo until she died two years later suffering the whole time. She was in constant pain from time of first treatment until death.
So...you don't know. I am not fearful of dying. I am at the age where I want to make the most of the days I have left to live...quality of life. If it happens in a year and I am dx with mets due to my now idc, her2+++, grade 3 dx...I will know that whatever time I have left to live, be days or a few years it will be quality. I love life, and I love my Lord whom I long to see one day.
No, in all these things we are more than conquerors through him who loved us. 38 For I am sure that neither death nor life, nor angels nor rulers, nor things present nor things to come, nor powers, 39 nor height nor depth, nor anything else in all creation, will be able to separate us from the love of God in Christ Jesus our Lord. Romans 8:37-39 For as Scripture states once I leave planet earth, I will past from life to life. So...when it's my time to go...I'm out of here to a better place.
With all that said, it doesn't mean, I'm going to do nothing...I'm just not going to do anything that is going to compromise my immune system, effect nerve pain problems, or aging faster than I am. My decision, my life .
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Please, these references to women dying and suffering who didnt have treatment...i hear these all the time on bco...please give up on that line of reasoning, and remember there are many many many women who die from this disease, some in pain, 'some peacefully' most of whom do conventional treatment until their death.
Enough.
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If it isn't written in cancer treatment guidelines it should be and in bold at the top: patient preferences should be prioritized! It should also never be said that patients who do not do conventional treatment are not dealing with their cancer. Everyone who is at bco is dealing with it or they wouldn't be here!
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...hello - If you have a minute and want to view the control issues many med profs have, feel free to read my two recent posts on "This is what cheezed me off today" thread. My RO's recept actually told me what I "HAD" to do. I wish her luck with that - Now I will never go back there. WTH?
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Yes, that'slife is right - there are plenty of women who do every conventional treatment who die every day. There have been so many angel threads lately.
I had a friend who was diagnosed with a small tumor, no lymph node involvement. She decided to go completely alternative and rejected surgery. Six months later, it was in her bones. Then she decided to take Arimidex and CAM treatments. That kept her NED for 8 years. Then, she did Tamoxifen and CAM treatments - got another year out of that. Then her cancer became triple negative and they recommended Gemzar. I wish that she had been able to afford chemo sensitivity testing - honestly, I don't know why that isn't standard. If we were going to push for anything from the insurance companies, it would be that they should cover that upon diagnosis. I think we would all have better responses/prognosis if we knew ahead of time what treatments would be effective. Anyway, that Gemzar did nothing for her cancer, but it totally wiped her out. She began to decline and passed away a few months later, last March. It was like the Gemzar demolished her body's immune system, which gave the cancer a real chance to spread all over her liver. It was so sad.
My point is that:
A.) if you can have surgery, then you should have surgery. Remove the tumor load.
B.) Conventional treatments are not always the best choice and just because you choose them does not mean that you will live longer. I fully believe that the chemo shortened my friend's life. Obviously, I can't guarantee that she would still be here if she had tried only CAM treatments, but I know that Gemzar absolutely didn't work.
C.) If you can afford chemo sensitivity testing, please do it. There is a place (I think in Greece) that will test your cancer's sensitivity to both conventional and alt treatments. If your cancer came back sensitive to 4 out of 7 chemos, then you have four great options and you don't have to waste your time with the three that will not work and will definitely reduce your body's ability to fight, as well as your quality of life. And if the tests also reveal sensitivity to several CAM treatments, like mistletoe or low-dose neltrexone, then you can add those in as well.
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I do want to make one correction in regard to the story of the woman who was dx with cancer on conventional chemo treatment who suffered side effects for two years before dying of cancer. Her last three days in a nursing home, she didn't suffer. The last three days she was unconcious the whole time.
We are fortunate that when death comes knocking at our door there are humane ways to help us deal with pain. Although, I do hope I am awake when I pass from earth to heaven as my father in-law was when he passed away. My husband after a good talk with him left the room to make a phone call to a hospice. The care taker then called my husband back into my father's room and said he had passed away. My father-in-law eyes were wide open, and he looked as if he was in awe. His arms was stretched out... I believe to this day an angel was there for him. My father in-law, who discovered he had cancer died one month after dx and was on very little pain meds. He had no idea he had cancer until he broke his leg.
Everyone is different. Every story is different. We hope the best treatment works so we can live a good life.
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Amen.
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Because the names of testing used in scientific testing for cancer sometimes are confused in discussions, I will post a link to an article about the fraudulent research cancer testing that was exposed at Duke University (one type of molecular testing), so that it won't be confused with the testing mentioned by sweetbean in (C) in her message earlier here (chemosensitivity testing). I think, but am not sure, that another name for chemosensitivity testing might also be "personalized cancer cytometric testing".:
molecular testing:
http://community.nytimes.com/comments/www.nytimes.com/2011/07/08/health/research/08genes.html
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do have any idea what the research at Duke entailed Alaska? Is it a shame that taxpayer-funded research is used as a basis for private capitalization? Just because there is negative commentary does not mean that this article by the NYT supports your position, whatever it is. I don't know why you post this article.. I think it is good that fraudulence is exposed, but this type of research can lead to less chemo... what could be more alternative than a genetic window?
How does one research under capitalism?? - the Burzinski way? you have to have money or willing guinea pigs (even under our current ways, the guinea pigs, mice, sick humans are desparate).. i don't agree necessarily with the particpants' participation but surely applaud them for sharing - in any way.
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There are many problems with the way research is funded in this country and the world. Research is generally funded in two ways - at an academic lab, such as a University, or at a pharmaceutical lab. They both have their strengths and weaknesses.
Academic Lab: Strengths:
- They are willing to try new, untested terrain and take a chance - the questions that they ask can likely lead to really significant discoveries.
Weaknesses:
- They have no experience (and I mean NO experience) in getting a drug past that initial Phase I trial. They don't know how to bring a drug to market.
- They don't know how to run research so that pharma companies will be interested in continuing the research. They don't do research to the pharma standard (i.e. if their goal is to downregulate a gene and they are successful, they consider it a success, even if downregulating that gene has horrendous side effects. To an academic researcher, the initial quesiton is all-important.
- Not only that, an academic researcher has to get the result once or twice to be considered a success. In pharma, they have to be successful hundreds of times to be able to move forward.
- Academic researchers must publish to keep their tenure, which means they must make their discoveries public. Once their discoveries are public, they are public domain,which means that pharma companies can't have exclusivity. Without exclusivity, pharma companies are loathe to continue the research at the next level.
- Typically, academic labs are funded by non-profits (think of all those walks). But the funding organization doesn't control the discovery, the lab does. Which means that they can choose whether or not to market a discovery to pharma, based on how much they think they can get for the info.
Pharma: Strengths:
- They know how to get a drug to market, they know how to run testing,
- They understand that any drugs must not have unacceptable side effects, like blindness and brain cancer.
Weaknesses:
- They don't like to take risks at all. They would rather research a sixth sleep aide or cure for baldness then really go out on a limb for a disease.
- They need really solid research results to move forward with anything.
So you see the problem: The academic and pharma labs aren't working together efficiently. What works is when the academic labs do research to pharma standards from the get-go, with milestones and "go/no-go" decision markers set in place. (It is not uncommon for research to continue, even after horrendous side effects have been revealed. At that point, money is just being wasted.) Intellectual property should be controlled by the funding organization, not the academic lab, because the funding organization has a much more vested interested in getting a drug to market. When the research is ready for the next level, academic labs should go to pharma with extensive successful results.
OK, that was a little primer on research and why we pour billions into research,but have precious little to show for it. It's why I would NEVER give my money to Komen. They have not, to date, funded ONE study that led to a drug. NOT ONE. And no, it's not too much to ask. With the billions that we raise and they way they trot us out there like a bunch of showponies, we should be demanding that they do it better.
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Interesting comments sweetbean and hillck: Thanks for posting.
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Apple,
I learned from the discussion.
In my own post I emphasized by bolding the text that not all molecular testing is a problem. I posted the article because many don't realize that there are different types of tests that are being researched and developed to try to match individual cancer characteristics to a better solution. I also posted it because, due to that natural confusion, it is worth distinguishing that not all testing and research is the same (for those who were aware of the Duke fiasco).
Hope that makes sense.
A.A.
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Hillck, I'd be curious to see how that 75% broke down - what they are actually funding in the community. I did the Avon Walk and was spectacularly unimpressed with how they awarded the funds. I haven't done very much research into what Komen funds in the communities, but I think the vast majority is awareness (because there might be one person on earth who hasn't yet heard of breast cancer) and mammograms. Considering how many women are struggling through treatment, physically, financially, and emotionally, you'd think they would be able to help more.
Finally, the thing that gets me is that they are KOMEN FOR THE CURE. Well, where's the cure? It's not too much to ask, with the billions that they raise. But they can't claim to have financed anything that led to a drug target and their track record continues to be dismal. I'm sorry - it's pathetic and we need to demand more out of Nancy Brinker.
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Regarding the frustration of how clinical trials are financed and conducted...There's a terrific film, Extraordinary Measures, with Brendon Fraiser and Harrison Ford. The DH's metabolic physician is the clinician who, in real life, treats the children, who appear in the film, with the rare catastrophic genetic metabolic disorder, Pompe's Disease. When the movie premiered in New York, our physician sat right next to Harrison Ford.
Likewise, there's a terrific book that The New York Times recognized as one of the top ten books for 2011 that I RAVED about earlier this year, The Boy in the Moon. It was among the best books I've read and I was thrilled that The New York Times stepped out of the box and gave it such distinction. Among the topics discussed are how trials, for orphan illnesses are conducted...
Honestly, I've learned more than I've ever wanted or needed to know about RARE metabolic diseases and RARE breast cancers.
http://www.amazon.com/Boy-Moon-Fathers-Understand-Extraordinary/dp/0312671830
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Interesting list. And yet, my point still stands. The academic world knows how to do research, but they don't know how to get it to market. They don't know anything about drug development. So Komen can send billions to researchers who are amazingly brilliant and asking all the right questions, but until we close the incredible loopholes regarding how research is funded, who controls the IP, we won't see progress from research that Komen funds. That isn't to say that there won't be progress - Pharma knows how to get drugs to market and breast cancer is a common disease so they are motivated more than usual. But Komen? Sorry, nope.
My local affiliate was in NYC and they didn't do crap for me or anyone I knew. I heard that they provided transportation, which is a little weird in NYC. I guess they also help with childcare, if you have kids. I needed help with actual bills and they were nowhere to be found. I remain unimpressed. I'm glad that they were helpful to you, though.
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They could send 1 million or 100 million or 100 billion. If the academic labs don't know how to get a drug to market, then we will never see a drug come out of this research. Never ever. And THAT is what we need to demand from Brinker. Not that they fund more research. But that the research they fund be done smarter, better, and faster.
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And seriously, 19%? I can't possibly be satisfied with 19% from an organization that uses "FOR THE CURE" in their name. Sorry, this subject makes me really grouchy....
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Its true that so many of the greatest medical breakthrough moments have happened in universities. I know it is terribly frustrating that with all the money and all the brains that a cure is not apparent. We can put a scud missile through a restroom window in baghdad but we can't target the right cells! I lnow you aren't disparaging the people who dedicate their lives to finding drugs and treatments that work and to find a cure. Its the same with all large charities that not enough funds get to the actual patients to help with practicalities. The local orgs like The cancer socitities always do better with this. I think its a great idea that we make it our business to highlight local needs for real people who are suffering and remember to donate to them x
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I'm not saying that they don't care. At all. I am sure that they do. Everyone has been touched by cancer. And I think Dennis Slamon's story highlights my particular issue - he was smart enough to work with a venture pharma company, which is why we have the miracle drug of Herceptin. For the most part (and I'll stop saying it's everybody, because clearly Slamon isn't among them), researchers don't know how to get a drug to market. It's not because they don't want to, either. They just don't have the knowledge and, generally, universities don't give them the support to do it, even if they knew how to navigate the system. It's a real problem
I'm not dismissing the efforts of the researchers. I just think Komen is pretty useless. I don't live in NYC anymore, but when I did I was very active with a non-profit that was AMAZING and couldn't get a dime out of Komen. Millions for mammograms and nothing for patient support. Sorry, I'm just eternally unimpressed with Komen.
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http://www.youtube.com/watch?v=trNri1370-0
In addition to Extraordinary Measures....
http://www.youtube.com/watch?v=CxkylRxJxh8
Lorenzo's Oil
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For what it's worth, I used to work in the medical research world, so I saw these issues up close and personal. I watched really great research languish because of these very problems. I will say, however, that in the last 5-7 years, the tide has slowly begun to shift towards funding research in a more cure-driven way. Organizations like the Multiple Myeloma Foundation and the Myelin Repair Foundation have really blazed a trail and it fills me with hope. Now, if we can just get the big BC organizations to take the same approach, we might be on to something.
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And sorry, I don't mean to sound so harsh. Komen just had a huge fundraiser in Florida (where I am right now) and the whole city was pink. It set me off.
Edited to add: And I mean it was literally pink. There were pink spotlights in the harbor and everything.
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I think many people understand your frustration sweetbean x It sucks and there is no doubt about that
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Kaara wrote: My intuition tells me that if an antioxidant is strong enough to protect a good cell, then it is also strong enough to kill off a bad cell, and would not work to protect it. That is not it's purpose.
Hmmm ... I would think that the antioxidants would be strong enough to protect the bad cells not kill them. Perhaps even making them grow faster and stronger. I believe that is the concern with using supplements during rads.
Kaara, I do understand your concerns regarding radiation. Some will probably think I am crazy, but I would be more hesitant to do more radiation than I would be to do more chemo in the future. I'm not saying I wouldn't or that anyone else shouldn't but I personally feel I have had more long term side effects from the rads than I have had from all the chemo I had.
I haven't read this thread in a very long time. While reading the point/counterpoint of the last few pages I was reminded of an old Saturday Night Live skit. You guys aren't being nasty, but it's just what came to mind ...
Now, just imagine it's a discussion about chemo vs no chemo.
Smile sisters!0
