Chemotherapy is NOT healing cancer
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In an ideal universe, the government would be able to take the herbs and other natural substances used for centuries by other cultures and test them--first, assaying them for their purity; then, performing in vitro studies for theoretical effectiveness; and finally, double-blind studies in humans to test both efficacy and safety in the real world. Dream on. Government research grants for anything non-defense-related have been slowly drying up for decades. (My husband actually had to change the area of genetics he was studying because there were no more grants being awarded for it). Such studies would have to provide funding for obtaining the stuff in the first place, and in the absence of strictly regulated purity (quantitative and qualitative) and safety standards, they’d probably have to go out and either harvest it or take it on faith from traditional practitioners as to exactly what they’re getting. You’d think it’d be a no-brainer to pass purity standards for herbs and supplements--good grief, we have exacting standards as to what can be called “milk,” “ice cream,” “cheese,” “jelly,” “jam,” etc. (believe it or not, some true nonfat milk can’t be called “milk” if it doesn’t have enough fat--but all commercially available “milk” starts not with whole milk which has been defatted to various degrees but with skimmed milk to which varying amounts of butterfat have been added back; and there are minimum, not maximum, amounts of sugar that are necessary to keep a perfectly natural product from being labeled “imitation”). But if you think “Big Pharma” is powerful Goliath, and the nutritional supplement industry is little David being unfairly persecuted by bureaucrats, guess again. There’s gold in them thar herbs--the supplement industry tends to be dominated by libertarians-to-conservatives, and they are big donors to Republican candidates and PACs. Same on a statewide scale for chiropractors (at one point, the WA state legislature had more chiropractors in it than lawyers, and it was no surprise that chiropractors were more loosely regulated there than in any other state). Follow the money.....but not the companies bottom lines--campaign contributions instead.
But it’s also unfair to bash allopathic medicine and the limits of the state of the art of contemporary hard science and point to them as the culprits for cancer patients failing to be cured despite getting the full arsenal of conventional treatments. That is no excuse for uncontrolled unregulated experimentation with unproven alternative therapies. (Yes, many have been used for thousands of years---now, think of how much shorter life expectancy used to be). Laetrile, “antineoplastons,” quackery--their real harm is not that desperate people seek them when all else has failed. but that they are pushed as an alternative to giving the “all else” a chance to succeed or fail.
And I hesitate to mention this here, but it is the true elephant in the room: not every ailment can--or even realistically should--be “curable.” Life is a terminal condition. If by some dint of miracle we could finally beat the Reaper, we would have an overpopulation problem dwarfing the one we already have--there would be exponentially more brutal competition for ever-dwindling food, land, water and clean air resources.
The ideal goal of medical research is to develop treatments that have the most benefit and do the least harm. Unregulated experimentation (whether with synthetic or traditional substances), with no objectivity or uniformity, is not the way to do it.
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ChiSandy, you made a valid point about life expectancy in the past. Certain cures may not have been found in the past simply because there were no patients with certain conditions. People died early due to trauma and infections. Millions perished in wars and famines. Life expectancy started to rise in the 1930s due to a wide-spread introduction of hygene. Treatments developed in the past may have worked for certain conditions that people had in the past. Modern medicine knows now how to treat most of them more effectively: infections - with antibiotics; trauma - with surgeries in sterile conditions. Certainly, there were cases of cancer, but they were rare just because most appear later in life. Modern western medicine has a lot of flaws, we just do not have much to substitute it with. There is no ideal health care system in the world, just like there is no best government system.
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ChiSandy, you are absolutely right about the politics behind the supplement industry (Sen. Orin Hatch comes to mind), but I don't think anyone here suggested we embrace unregulated experimentation as an alternative to conventional medicine. The naturopath I see, who is associated Bastyr University is doing studies on integrative treatments in conjunction with conventional treatments, in cooperation with Seattle Cancer Care Alliance. She is using the same scientific method all researchers use.
For me the true elephant in the room has been how limited the benefit of chemotherapy is for many patients. Some of the studies I posted indicate that it can promote factors leading to metastasis. Granted these are animal and cell studies, but can you imagine if a complementary or alternative therapy had these effects? They would be rejected outright. There is a huge double standard on what is acceptable, and much of what we accept as scientific proof for conventional drugs is biased by corporate interference in the scientific testing process (see "Bad Pharma" by Ben Goldacre).
I just want uniformity of standards and consistency in how we treat conventional and alternative treatments. I really don't trust many sources of information anymore, for either. But the fact that the drug industry is allowed to market directly to patients and doctors is ridiculous. Why should marketing have anything to do with it? Shouldn't doctors be making up their minds based on the scientific evidence?
Honestly, I think medical treatment should be presented in a clear, quantified way to patients. How much is any aspect of treatment expected to benefit you? A doctor should be able to give you some scientific evidence to support it, or he/she shouldn't be offering it. With chemo, it seems it can sometimes offer an increase in disease free survival, but rarely an actual decrease in mortality.
Also, your comment on mortality reminded me of a story in the book about the U.S. healthcare system by Dr. Marty Makary, "Unaccountable". He described a breast cancer patient in her 80's who did not want any treatment, but to go home to spend her remaining time with her family. He was fine with her choice, but doctor after doctor tried to convince her to have additional treatment or at least testing. Finally she consented to have a biopsy. Her lung was nicked, and she spent 6 of the last 9 weeks of her life with complications. So in her case, following the standard of conventional care really robbed her of time spent peacefully with her family at home.
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Fallleaves: yes, that is so well stated. Better, clearer info on the efficacies of all therapies is needed and uniformity of standards.Very difficult to muddle through all of this in the weeks and months following diagnosis.
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I am loving this discussion! It seems to be one of the few alternative sites where people are engaging in critical thinking, not bashing. Let's keep it up. Right now I don't have much to add, wish I did. I have tried several integrative doctors to try to get knowledge about alternative substances, but so far with little success. I do take supplements, exercise and pay attention to diet, and I so wish there was more real evidence about lifestyle choices and supplementation that has been validated. The only two non-Western medicines my oncologist told me to take are vitamin D and a baby aspirin daily, so maybe those two substances have shown to be effective. Oh, and she also said exercise, which I try to do, even if some days I have to settle for a walk.
As for supplements, my husband and I call the manufacturers of every supplement and quiz them on sources and their manufacturing processes. It's the best we have been able to do to try to ensure that the supplement actually contains what it says it does.
The right doctors will go against standard of care if pushed. I couldn't do radiation after my lumpectomy because of prior radiation as a child, and the radiologist I met with said he was okay with me not doing radiation, given my stats. I do panic about not doing radiation probably at least once a week, but right now I am just in a more aggressive monitoring mode. All three of my doctors said the standard of care was a mastectomy if I couldn't do radiation, but have all been comfortable with just monitoring me for any signs of recurrence.
I am avidly reading everything posted here, and I am loving what everybody has to say!
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Italychick, Many think walking is the very best exercise! Was wondering why, if you couldn't have radiation, you didn't get a mastectomy.
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I can still get a mastectomy, but have chosen to watch and wait since I had clear wide margins, three negative nodes, a pet scan, two Breast MRIs (one before surgery and one a year and a half later), a brain MRI, two ultrasounds, tumor markers done every three months, and on and on. I got a circulating tumor cell test done and that came back good too. My tumor also had no lymphovascular invasion, which I know doesn't mean something didn't get out through the blood stream. I also did this immune system test which shows right now my immune system is better than a 20 year old. So right now I am relying on aggressive monitoring.
Basically if I can avoid it I don't want a mastectomy. So I have chosen watching and waiting. My breast surgeon and oncologist are both closely watching me and they will jump on anything suspicious, and I trust them. My surgeon did my surgery within a week of my ultrasound and mammogram birads 5 rating, so I know she will go after anything suspicious really fast. We skipped the biopsy process and I had the tumor taken out whole, she removed 10 or 12 centimeters of tissue for a 1.3 cm growth. So my first "surgical procedure" was the excisional biopsy and I just got lucky that all my results came back the way they did, which made getting a mastectomy hard for me to do.
I really didn't want to do the chemo or Herceptin either, but I wasn't brave enough. I did explore alternatives such as IPT chemo, etc., but I was just too scared, honestly. Right now I get checked once a month and get MRIs every six months, alternating every three months with ultrasounds (which I will be paying for out of pocket).
I am in awe of women and men who have the courage to say no to chemo and Herceptin, but I was too big of a coward, honestly. Right now I am hoping that all the alternative stuff I am doing will make a difference and prevent any future growths.
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Sounds like you will be just fine, Italychick! You did the right thing, imho, by getting chemo and Herceptin. As you know Her+ is incredibly deadly.
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I'm amazed that you'd be afraid not to have these chemicals, I'd be afraid to have them. hi yorki mom, long time no see. been thinking about you
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Abigail, I was terrified to get the chemo chemicals, and I went to several alternative/integrative doctors to try to avoid them. Nobody could come up with a treatment plan that wasn't "we will try things and see if they work." I had an RGCC test done, and it turned out the most effective thing for me was Taxotere, even evaluating all the natural substances. Most of the natural substances only had about a 30-40% chance of working. Trust me, I spent $5,000 out of my pocket trying to avoid chemo.
I am 15 months from final chemo and happy to say my body is functioning like a complete champ and I have no residual side effects, heart function is perfect, etc.
And I hope I never have to do any conventional treatment ever again!
Interestingly, I had mumps on both sides at the same time when I was a child, and somewhere I saw that mumps is protective against ovarian cancer. I wonder how much we have un-learned about the body and disease process over the years. I do believe in immune system stimulation and whatever my grandkids have I let myself be exposed to, just in case immune stimulation has value.
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very interesting. I had mumps both sides too as a young adult. it also made me quite sterile too but I hope you're right about the protective bit. I'm 79 now and have never cared about effectiveness of either conventional or alternative. conventional isn't a do for me, I'd rather have natural "side" effects, (which are effects) than induced stuff from the conventional medical people
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Abigail, you are a braver woman than I am. I've seen some of your posts and what you go through, and I admire you for sticking to your core beliefs. Hopefully all is going well with you at the moment
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nah. pretty chickenshit actually. but I know my body after nearly 80 years, know reality for me not statistics none of which know me
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I'm curious about what types of testing/scans and frequency I should expect moving forward. While I was deciding on my treatment plan I asked repeatedly about tests to monitor progress and potential recurrence. I was not impressed with the % that chemo offered me and I always figured I would take the natural route if confronted with this disease. Her response was basically nothing... no tests or scans, just waiting for symptoms and at that point I would have stage IV incurable cancer. No tests for markers with BC, no nothing.
I did one chemo session and quit. Doing natural program, diet, lifestyle, etc. Decided to try the radiation and will have to make a decision around the AI's as I had ER and PR positive tumor.
What sorts of tests and scans are your MO's offering you? So far, all my MO says is blood tests/exam every 3-6 months. Are there things that I should be asking for?
Thinking about working with a naturopathic group, having them run a few lab tests for me monthly/quarterly.
thanks for this thread and thanks for your help!
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all my monitoring except blood tests and feel ups are on my own nickel. I recently paid for a test called SpectraCell that measures a bunch of different blood levels that are valuable to determine how robust my immune system is working. My cash price for that test was $210. I paid for the RGCC test ($3,000!) to measure my response to chemos, natural substances, etc. It also looks to see if there are any circulating CTC cells in the blood. Traditional doctors that I have asked have no faith in these tests, but I do what I am comfortable doing and don't necessarily listen to traditional doctors all the time. I feel that the stronger my body is, the better chance I have of fighting off disease.
I'm also on several supplements to aid in immune system building and overall wellness, things like coq10, curcumin, vitamin d3 and others. Basically once you exit the traditional standard of care, it is very difficult to determine what to do, and my husband and I have spent hundreds of hours researching every possible thing we can.
Standard of care will be for them to recommend annual diagnostic mammograms, but there is considerable controversy about mammogram effectiveness. I had not explored all the controversies since I won't be confronted with that decision until October or November, and I'm not sure what to do.
Best of luck!
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My last radiologist said mammograms for me are almost useless, I do MRI ever 6 months. But insurance expects me to have mammograms anyway. Another one size fits all.
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Sarahrae, the one test the naturopath I see requested was for my NK cell count, to see how well my immune system is functioning (excellently, they said). From my conventional Dr. I asked for a CRP test to measure inflammation levels (low) and test for vitamin D levels, since there is evidence patients with higher levels have been outcomes (mine was pretty good).
Mammograms are a real irritation for me. My breast surgeon showed me mine and said, "See the cancer?" I said, "No." She said, "Neither do I. You have very dense breast tissue." But can I get an ultrasound now that I've had surgery? NOOOO. I can get a mammogram, which will show nothing, and an ultrasound only if the mammogram shows something abnormal, which it won't. Classic Catch-22. I've been around this issue several times with my MO, and she seems to be at the mercy of the hospital/insurance rules.
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Thanks so much for the great responses! I've heard some women say that they get MRI's instead of Mammograms, curious about the reason, why don't all women with BC Dx get MRI's on the regular??
What other tests are you getting?
Anyone with hormone positive BC getting hormone levels tested monthly? Quarterly?
thanks so much!!
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Hey Sarah, my MP told me it depends on the country where you live...he said UK are very conservative with PET/MRI scans, the US are all for it and Australia are somewhere in the middle. I get annual mammograms and ultrasound, but no MRI or PET scans. I also get DEXA scans for bone density every 2 years and regular blood tests for hormone and vit D levels. I wish we did do PET scans esp after treatment completion or intermittently, but my doc said its unnecessary (due to additional stress and radiation) until symptoms, which is something I find hard to swallow. It sounds like it wouldn't change the outcome, if cancer has gone metastatic (stage 4. I have also looked into thermography and had a body scan recently which was Interesting because it measures inflammation in your body. I will do that annually alongside conventional surveillance, so I have an idea of how my body is tracking
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In your case, Falling Leaves, I would get a thermography scan. It will show you where your tumor is or is not.
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I am at a crossroads. I am hating Faslodex. I am seriously afflicted with insomnia and aching. They want me to take Ibrance. I think I am going to decline. The last thing I need is for my immune system to be further damaged along with the lack of sleep I have been getting. The two together I think will be catastrophic for me. So....
I am looking for other ideas. Apparently, if Faslodex doesn't work, I will be heading toward chemo. I don't know if I want to do that if it isn't a complete cure. I am at peace with dying. None of us will get out of this world without it. I don't necessarily want to die, but I don't see the logic in continuing something that isn't going to ultimately work.
I have a really hard time thinking that there isn't a way to survive. I want to have faith in the human body's ability to heal. So, what to do next.
I don't believe all doctors are out for money. Some could be. I have more skepticism about pharmaceutical companies. I have some cynicism about people would charge us for air to breathe if they could do it. One way to ensure wealth would be to convince someone that in order to live he or she had to take this expensive drug. Yet, I know that chemotherapy and surgery saved my life up to this point. I don't know that it is going to be the future answer. I don't believe that anything naturopathic would've worked at that point. Just like herbs won't set a bone.
So...what to do now. I am not working. I couldn't keep it up physically with what I am going through right now. I have to find a sit-down job while I try to rehabilitate myself. the problem is that I don't know If I can if I continue on this drug.
So...I have some thinking and debating to do in my heart.
SleeplessinUtah
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In her blog the scientist M.L. Henneman examines chemotherapy as an option for her breast cancer.
I found it interesting reading.
Perhaps others will too.
http://bioblog.biotunes.org/bioblog/?s=chemotherap...
May all be healed and find their best supportive healing allies, Stephanie
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I don't think chemo was ever a cure, I think it was a treatment that slowed growth. There are now other treatments, less barbaric, that slow growth.
I think that the world is on the brink of a new Standard of Practice where cancer is concerned. For decades, chemo has been the standard treatment but new scientific discoveries are sending the treatments in different directions.
That makes me so very happy because I believe chemotherapy is a barbaric form of treatment to force upon a human body.
It makes me happy because my breast cancer is genetic and while the new treatments are in their infancy and may not be available for me, the new treatments give me hope for a CURE for the offspring in my family.
I have never believed that chemotherapy cures cancer, it was just the best treatment we had. My mom died of cancer 25 years ago, chemo was the only treatment available. (Surgery goes without saying.) I believe we already have better, kinder, gentler, equally effective treatments.
Is my anti-chemo showing? I hope so.
Darlings, I hope you all enjoy a peaceful morning. Coffee's on my diet and I think I'll have some.
cb
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kayb, I wonder why neoadjuvant chemo isn't offered to many. In your case it obviously worked on your tumor. I am assuming you had mx as preventive for recurrence. We're you offered whole breast radiation instead of surgery?
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I'm guessing because Mri cost a lot more...well they do in Canada anyway.all boils down to the big buck!
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Neo-adjuvant chemo was the first thing they offered me here in the States when my reccurence was diagnosed. Being anti-chemo, it was not an option for me but it was an option I was offered.
I'm so sorry for you all on Nationalized health care and ironically, I've always felt the US should go that route. I'd like to tell you to c'mon down but I have no idea how the powers that be would respond. They seem to respond kindly to Mexicans coming across for free health care, why not Canadians? You might think it over.
Ladies, I've had my once-a-week allotment of alcohol, so please pardon me if this post is out of line. That said, I'd best stop posting.
Have a good evening.
cb
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There is no cure for bc. We just hope it has gone away and doesn't come back. Cure implies no worries on it coming back, imo.
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I was just curious about chemo before surgery. Kayb's tumor was gone after chemo, so she knew it worked.
Kayb what was your pathology report after surgery were they able to find anything?
Could surgery be safely avoid?
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Blue Koala, once the cancer starts growing it out-foxes and evades your immune system. It has nothing to do with the strength of your immune response at that point.
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Gracie22, I had neo-adjuvant FEC. I am pretty sure it is big reason why I have gone 5 years from DX without mets (yet anyway). FEC, by the way, does not include either cisplatin or taxols, to the best of my knowledge. I had taxotere after my surgery. My doctor's argument for neo-adjuvant was that I was right on the edge of developing mets, and if we did surgery first, I might develop mets before I got to the chemo.
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