Survivors who have used only alternative treatments
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Apple..Hugs
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Swimangel do you have a link to Naveline being used in early stage (1-3) I can only come up with stage IV and my onc will not work with anything approved for this stage. She turned down TH as well. I tried to get a second opionin within this HMO and was flat out told any doctor here will give you the same combo as it is standard of care which is frustrating because I see how many of you have oncs working with you.
In my search I did run accross infromation of a breakthrough for herceptin resistant patients which I thought was exiciting. The SRC (saracatnib) inhibitor working with the PTEN which they says causes the resistance to herceptin. I would give you the link but I am not allowed to do any copying here...lol
The work is at MD Anderson and is called Combination overcomes breast cancer resistance to hercepting. Came out last month. Any yippee they mention woring working on tests to see if herceptin will work on the individual!! May be a different article but love to see any advance of making sure a RX will work on the acutal patient before exposing them to the side effects if it won't work. Apple sure hope this gets resolved for you. I am wondering if you should remove that post as that may also be what is coming up in the search. Again I feel aweful this thread has caused you any harm.. Sending HUGS too
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Following up on Member's post, the NIH actually has an excellent web site/center - the National Center for Complementary and Alternative Medicine, which is a serious attempt to examine alternative therapies for a variety of diseases, including cancer. They are funding several studies of their own regarding things like black cohosh, etc.. and have PubMed links to studies. A person doing an alternative approach should take a serious look at this body of knowledge, which is still in tis infancy. Go to: www.nccam.nih.gov.
A person doing an alternative approach may also be helped by going to the web site of an organization I mostly loathe - the Komen foundation. They have a page that examines and "grades" the evidentiary strength of alternative and complementary therapies. Go to: http://ww5.komen.org/BreastCancer/ComplementaryTherapies.html. A low grade does not necessarily mean a therapy doesn't work, and could simply denote a lack of well designed studies; a high grade may or may not be pertinent to a person seeking to treat an existing cancer, since therapies that earn good grades for BC like Vitamin D3 are mostly preventive - not curative.
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wornoutmom - just print out and bring the abstract I copied earlier to your oncologist - I emailed it to my oncologist and he said he read it already and agrees that Navelbine is a good choice for early stage breast cancer treatment. You could also go to www.askanoncologistnow.com - it takes a while for them to respond but they WILL respond to your question.
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hi orange,
the link you gave in previous post does not work-- trial 9831..
can you repost again? Specifically that presentation in the San Antonio symposium
thanks a lot in advance.
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orange1,
I found it.. apparently you can go to this site and see all the presentations during the 5 Day December 2010 San Antonio Breast Cancer Symposium
just click on I agree on Term User Agreement-- search for Perez 9831 and will show you some results.. thanks for this orange!
I found out there are more presentations related to Her2 positive BC in that site..its worth looking at..
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I may have misread and I can't remember who said it so I don't know which name to search under, but did someone say that at ASCO they said that chemo would no longer be considered necessary for women with two nodes or less, but optional instead? I am trying to find the source of that information or some way to verify it. Does anyone know? Thanks in advance.
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Hi Trasia,
Thanks for finding the link. I'm not sure why I keep having issues with links on this site.
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Trasia the link you gave brought up 12 studies non of which seemed to be the right one. Do you have the title by chance?
Swimangel you are ahead of me I can't paste anything on this site..lol I saw the ask site but I will need a study to have any chance. I am the weird stage as some sites call me early and others say late... weird.
My onc has one method and won't budge and when I got a second opinion I was told all Dr's in this HMO will give me the exact same answer so if I try I will have to go to member services. I have thought of both but do not trust my center to administer IV's on me. I am at the border I think 12 weeks out. One thing that bugs me is when you see new studies of break throughs in cancer they start out alone then they always add chemo. Then it hit me it is illegal to treat cancer without chemo. Very frustrating as how will we ever find a less toxic treatment if it is illegal??
My onc needs to look at my individual concerns I have brought to the table and quit characterizing me only on my receptors. I see other oncs on here work with their patients.... just very frustrating to me.
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WOM - If you decide to go ahead with the standard treatment, it would be very wise to get a porta cath which would take away the worry of IV's. A port makes it much easier.
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Its not that its illegal to treat without chemo, its that when they are testing something that is experimental that have to -- ethically -- also give the patient the current standard of care. They don''t want to push patients over the cliff without a safety net.
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WOM, what you just said really resonated with me, and I think it's the crux of the problem for many women...
My onc needs to look at my individual concerns I have brought to the table and quit characterizing me only on my receptors.
How nice it would be if you had an integrated cancer center at your disposal, so you could combine the wisdom of BOTH worlds--a chemo cocktail for your receptors, and adjunct "alternative" (I hate that word) strategies for your symptoms, well-being, immune system support, etc.
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Anne - 'Complementary' is a better word than 'alternative'
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yes, that's what I was looking for. Thanks!
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It is in the title of this forum
Sue
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Hi wornoutmom. I'm a little late to respond because someone just shared your post with me. I was diagnosed with Stage 2, ER+, PR-, HER2+ breast cancer in 2002 at the age of 27 years old (and while 38 weeks pregnant). I refused chemo, radiation, and 5 years of hormone treatment (Tamoxifen), and I am healthier than ever. In lieu of conventional treatments, I chose to work with an integrative clinic that creates customized treatment plans based on the individual's cancer, her internal "terrain", and environment. I'm happy to share more details with you via email or by phone. My husband and I recently wrote a book detailing the experience and thinking behind my decision-making, and we reference numerous studies supporting my decision. The link to our web site is in my profile here, and you'll find my contact info on that web site. Or you can send me a PM here. Wishing you a return to health with the utmost respect for your personal decisions. Hollie Quinn
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Hi Hollie,
Congratulations on being NED, but isn't it disingenuous to say you didn't do conventional treatment? Isn't it true that you had lumpectomy and sentinal node biopsy? It's a critical distinction.
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Hi thenewme. Thanks for the well wishes. Yes, I did have a lumpectomy and sentinel node biopsy. The original wornoutmom post that I replied to specificially asked about patients that had rejected chemo and radiation -- not surgery. I always clearly state that the conventional treatments that I rejected were chemotherapy, radiation, and hormone therapy. I also was told to do additional surgery by some (but not all) doctors, which I rejected as well. I am in no way against conventional medicine, including chemotherapy. But I am against conventional-only treatment, as the scientific evidence does not support its efficacy. I also believe that there is a vast amount of cancer overtreatment, in particular for breast cancer. But to end on your point about surgery -- it is by far the best tool that conventional medicine has to offer. Thanks again for pointing out the clarification, and I wish you much health and happiness. Best, Hollie
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The funny thing is that as much as I urge folks to pursue conventional treatment, I am more skeptical of surgery. I think too many women get mastectomies instead of lumpectomies and I think way too many women have their ovaries removed.
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And the circle continues.
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Hi Member_of_the_Club. While mastectomies are definitely down from recent decades (in particular, those radical mastectomies), I agree that overly-aggressive surgery is still used way too often. Our main criticism of surgery is that it does absolutely nothing to address the underlying reasons why cancer developed in the first place. The leading integrative science is focusing more and more on "the terrain" of cancer in the body. As a brilliant integrative oncologist said to us recently, we're obsessed with finding/removing/poisoning the "seed" of cancer, but we do nothing about the "soil".
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MOC - you and I think alike. I can't believe women who have BMX - just for a small amount of LCIS - just so they don't have to be closely monitored (and it's not even cancer), or people who have an mx to avoid rads.
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Youdidwhatbook,
What integrative center did you go to?
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Well suepen- it is a personal choice and one I am glad I made. No regrets.
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Forgive me if I am wrong, but is it not against the rules to solicit or promote products on the discussion boards?
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I wish the You Did What? blog was more informative - the way the Life Over Cancer blog is. The You Did What book doesn't really give any advice or insight into alternative care, which is a bummer. Every article feels like it says the same thing...sigh. I'm curious as to what the book says, though...
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Hi sweetbean. I was treated by The Centre for Natural Healing in Ashland, OR. It was founded by Donald Yance, author of Herbal Medicine, Healing, and Cancer, who's highly regarded in the field of integrative cancer treatment.
And you're right about our blog. We've been busy sharing our story and are only now picking up the pace on our blog. Thanks for the feedback.0 -
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WOM - you should read the article in that link - there's a message there.
Good one BlackCat!!!
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Clearly Orac didn't know the cancer was a very aggressive grade 3, ER+ PR-, HER2+. I understand HER2+ is less likely to metastasise after five years so it looks like the danger period has been passed.
Well done, Hollie.
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