Survivors who have used only alternative treatments
Comments
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Member of the Club, great point about ranting! It's one thing to "rant" about <whatever> treatment if you're going through it or considering it. It's an entirely different thing to "rant" about something you really know nothing about, or rant simply to provoke or further a personal agenda.
This especially deserves repeating: "Its as if those who pursue alternative approaches (as opposed to complimentary) are so ideologically bound up with their choices that they see any discussion of the downsides as a criticism of their very being. Most of the rest of us, whatever approach we choose, take in the give and take."
I'm triple negative, and I've done all the "conventional" treatments available and still have a very real and significant risk of recurrence. I come to this forum in search of helpful modalities that I can incorporate to increase my odds for success. I want to hear the pros AND cons of anything I'm considering, and my life depends on basing my choices on facts, not fantasy.
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thenewme: I agree with what you said about triple negative, me too.
digger: I think the word "natural" has become a marketing buzzword that means pretty much whatever you want it to mean. Is having cancer in itself natural? I also don't really understand what "alternative" medicine means. Does it just mean that you are not doing conventional?
WOM: I may have missed this, but are you against having radiation, also? Most women find it easier than chemo.
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OK, here is my stab at definitions:
complimentary -- alternative plus conventional
alternative -- no conventional
integrative -- like complimentary, but a melding of the two by clinicians working together
"Natural" is not a term I would use because it really has no meaning. Taxol, as has been pointed out, is derived from bark. And there's nothing natural about taking supplements of any kind.
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MOC - thanks for the story of the leukemia survivors. I'd been thinking that chemo would be a lot milder than anything WOM had been exposed to in the past. I was also going to point out that taxtol/taxotere were developed from the Pacific Yew Tree (but someone beat me to it) - how natural can you get
Sue
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.....and WOM your story about the woman who had to stop chemo after one dose (and it was 'heartbreaking' - your words) - she could have had a dose reduction, which is something that happens quite frequently if side effects become intolerable. High doses of steroids are commonly given with the taxanes, as allergic reactions can occur.There are nearly always ways to aleviate such situations.
Just pointing out that the administration of chemo regimes can be flexible, and tailored to suit the individual.
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Hi Nerida,
Good luck with the scans. Have you asked them why they haven't done a PET scan on you. I couldn't understand that they had diagnosed you with MRI - I do know it's used for the brain. A PET does your whole body and would probably be more reliable.
((((((HUGS)))))))
Sue0 -
Nerida - a PET is good, my DH had 2. They inject you with radioactive glucose and any tumours attract the glucose and light up. It's only from the neck down though.
Sue
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I'm not sure who WOM is talking about as far a stoping chemo after 1 does, but it sure sounds like me. I did have 1 dose, spent several days in the hospital, and was told by 3 DR's they would not give me more. It took 4 months for my wounds to heal. I got something called radiation recall. In my case I had already had internal radiation, so I burned from the inside out. Just so you know the radiated skin still opens if I lift anything heavy, or for that matter even swimming can cause it to open.
Am I saying one should stop chemo? In no way, just saying one cannot make assumtions about another persons issues.
By the way I am on Femara and plan on being alive for a very long time.
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Hi Nerida,
You're definitely NOT alone in your fear of chemo and scans! Ack!!!!! I'm sending good thoughts and calming vibes your way as you wait for your results! HUGS!!!
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yes, nerida, thinking of you and sending prayers/karma etc.
xo
j
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PET scans often have false positives. When I was living in the US, every PET I had with a suspicious spot was followed up with another scan, most often an MRI. When I returned to Canada I haven't had one PET, everything is MRIs and CTs. Also, PETs deliver a much, much higher amount of radiation to the body than a CT. My onc here was astounded by the amount of radiation I was exposed to via the number of PETS I had. Just sharing my experience.
Good luck Nerida. And I love your signature line!!
Edit to add: I would not ever have another PET -- I used to like them until I found out more about them. My fav scans and in my opinion the most accurate are MRIs, the CT with contrast, then simple CT in that order.
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Thanks Konakat - It's good to know MRI is better especially seeing there is no radiation involved. My DH had PETS as he had bowel cancer - so they are looking for mets in the internal organs.
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MOM-
I chose a BMX based on personal choice, not fear. We all have personal opinions in regards to our course of treatment, and I feel it is best to respect that.
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Hi Nerida -- in the Stage IV forum there's a thread titled:
Long Term Survivor with Active Mets
If the link doesn't work (I can never get them to) I found it near the top of the 2nd page of the list of threads.
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For the newbies and anyone else,
Just for the record........I have been living with breast cancer for 8 years. Dont believe that BS about most dying in 5 yrs. I've been stage 4 for over 4 years.
I guess I use complimentary treatment along with Aromasin and Zometa. But I always get my onc's approval and she usually tells me its ok. Not all onc's are completely against complimemtary treatment. My onc is okay with it but she does want me to ask first to make sure it wont interact with my drugs and/or be harmful in some way to me.
Yram.......You are not the only one. Thats kind of what all the arguing is about. People like myself and some others are not against alternate/ complimentary treatment but know that when u have an agressive form of BC u need to hit it with all u have. Get rid of the cancer before its out of control.
Hugs, Mazy
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Mazy1959 you wrote:
"....People like myself and some others are not against alternate/ complimentary treatment but know that when u have an agressive form of BC u need to hit it with all u have. Get rid of the cancer before its out of control....."
If only that was feasible..... with conventionals and/or alternatives..... But it looks like, after years and years of pinking and billions of dollars raised, we are still at the point where what really determines longer-term survival is the lottery of the tumor-type one gets, rather than hitting it with stronger and stronger chemo/chemo-prevention drugs. Alas.....
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I just want to say something that has been bothering me. I have a very dear friend who went throught 3 rounds or chemo for nonhopkins type lymphma which I know is nothing like BC. It did nothing for her at all. Thank God she had a sister who was able to give her bone marrow. She has been NED for 5 years. It just makes me leary of putting so much trust in chemo. I pray it will work, but who knows, in my HOP it's a crap shot.
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I think what determines long-term survival is two things: One, just what Yazmin said, the type of tumor one gets, and two, treating it with chemotherapy/drugs like Herceptin and/or radiation. The biology of the tumor determines which treatment is best for you, and hopefully that type of analysis will get even more precise in the future.
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Its a fight between the treatments and the cancer cells. Sometimes the cancer cells are stronger. Most of the time the treatment is. We know that survival increases with various forms of treatments so there are tumors that respond to treatments. Most. There is also a grey area of breast cancers that do metastasize and are eventually fatal but can be kept under some control by the treatments for years. I know a woman who has had mets for over 20 years, never NED, and with progression, but for this length of time, every time a treatment fails her there is another one that she tries that keeps her going. I also know a woman whose cancer was entirely resistant to treatment and nothing stopped it.
So, yeah, the pathology of the tumor matters but so does the treatment. The woman I know who has had mets for over 20 years would have been dead years ago without treatment. And a generation earlier I don't believe I would have survived my node-positive bc.
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Not everyone has a positive result from chemo. But I think common sense needs to prevail here. All we can really do is to hit cancer with the knowledge we have. If someone doesnt want to take chemo and rads, then fine, but I hope whoever has an agressive form of cancer who chooses this route is one of the lucky ones. Chemo does have life saving benefits for many people. To sit back and just do nothing at all when u have an agressive form of breast cancer is just down right ignorant. Sorry if that sounds rude but I cant think of any other word to describe it.
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Mazy - I have to agree with you. Take PetJunkie's story on a previous page of this thread - DCIS with microinvasion HER2+ve - mets in 2 years. It's just not fair as she wouldn't have even been offered chemo. I get really upset when I meet women on here who have mets right from the 1st diagnosis, who don't even get the chance to have chemo in the ajunctive setting and then you get some people who are offered this possibly life saving treatment and refuse it.
Sue
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Great News Nerida!!! Don't be scared of the Zometa infusions - they're fine after the first one
Sue
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Nerida, are you also posting in the stage IV section? I believe lots of women there have experience with this/
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Mazy, I agree. This is where statistics are in fact valuable. I'm sure each of us, whether we realize it or not, whether allopathic or naturopathic or both, lives in the positive end of our statistics to give us hope.
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So happy to hear that news, Nerida! I'm no expert, but I think I've heard that women who are Stage IV from the start tend to do very well with treatments that keep them stable for years and years...because their tumor cells have not previously been attacked by anti-hormonals or chemo (like earlier-stage women who recur) and therefore are not resistant. Sounds like you have a reasonable and responsive oncologist who addresses your concerns.
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Nerida, glad to hear you got some good news! Good that you have a onc that will work with you. About the bisphosphonates, my onc wants to me to start taking them. I had not heard about the risk of esophageal cancer, but she did mention some people, rarely, have a problem with their jaw bone.
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Nerida, Glad u got good news. I have taken Zometa for over 4 yrs and other than being tired the day I take it, I have had no probs. Some people say they get flu like symptoms with their first dose. Also I have had 2 tooth extractions since I started it and lucky me has had no jaw necrosis. It is rare to get it but its possible. I was stage 2B ILC initially and dx with met to bone 3yr 9 mo later. Zometa and Aromasin have been my treatment and has worked all this time. My osteopath told me that from what he sees, this combination does a great job. Lets just hope it works for alot longer . I have other drugs I can take if Aromasin ever stops working. Good luck..HUgs, Mazy
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Nerida - a friend of mine who is an onc nurse said to get them to deliver the zometa slowly - less chance of SE's then. I had no problems from the 2nd infusion.
Sue0 -
excellent Nerida! happy for you.
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Nerida all bisphosphonates have the same risk but the jaw thing is rare. Make sure you get all your major dental work done before. The real issue is if you need a tooth pulled so if you need that done do it before starting the drug.
Also the bones can become brittle but that's only if you're on them for a long period of time (I think over 5 years). I have read if you take a break after 5 years then go back on it you shouldn't have this brittle bone issue.
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