Polite Explanations are Welcome....

AA wrote:

Regarding enrollment in trials, the posts here at that point were attributing the "poor recruitment" for other trials to the belief that if people couldn't get the "something better" than standard therapy, then they wouldn't accept standard therapy if they ended up with it instead of the something better. 

This is not how I interpretted what the other posters were saying.  I thought they were saying what I was saying. 

AA wrote: "My thought was that the reason the general population of + + women do better with tamoxifen than without it is because only 1/3 of + + women have a high level of AIB1 and do worse. And my thought was the reason that 1/3 does worse isn't necessarily because the tamoxifen did anything at all -- and they were left without any protection that they otherwise would have gotten (andthought they were getting) from tamoxifen."...could be.  

Tamox is cleared from your body pretty quickly.  tamox side effects are known to reverse when the drug is stopped  Your permanent lack of libido is almost certainly from menopause (essentially OA), not from tamox.

AA: "You are welcome to start a thread supporting standard therapy in the standard therapy forums, Apple."

Why in the world would i want to do this? I don't want to support or promote anything.  

seriously...?  i resent the idea that i need your permission or approval to explore alternatives and must agree with you and your agenda.  it all seems so negative.  but whatever.   you don't need my approval to post positive, helpful posts.

sorry to the moderators.  I'll stay out of this forum and just read the helpful posts without comment from here on out.  Have a celebration.

Moderators wrote:

"Please remember that this forum is here to discuss alternatives that are used instead of conventional, evidence-based treatments. If you are not interested in alternative treatments, there are many other forums.

Everyone has a place here on the BCO forums, as long as they can remain civil and respectful of others views." 

Some of you may be surprised to learn that not all women are "happy" living with the long term side effects of chemotherapy. If you are one of those who are just grateful to be alive and don't mind the neuropathy and anything else that comes with taking this life saving cancer causing treatment, then perhaps you should share your happiness on any of the standard medicine forums.  

The women who frequent the alternative forum are looking to discuss non toxic alternatives because they are sick and tired of being sick and tired. They are very conscious of the ongoing corruption surrounding the FDA, some researchers, foundations, drug companies and physicians.   

AA started this thread. If anyone should "move on", it should be those who are no longer interested in the discussion.  No one is being forced to read her posts. 

And if you are concerned about the newbies being influenced, let me remind you that the majority of women diagnosed with BC are over 55. In other words, they are not children, so please stick to the topic and stop using this as an excuse to throw insults at the OP.

Is it just me, or does anyone else find it just a little odd that jenniferme joined a couple of days ago and has posted on this thread only.  Too coincidental that someone joins just to chime in on the big, bad FDA, medical industrial complex, doctors, etc.  

But whatever.  Agree with VR and apple.  No one poster should be the gatekeeper for any particular thread.  

AA... You can't have it both ways. You question the bias of researchers and question studies that don't include alternatives to including chemo as the standard of care. When so many studies include chemo as the standard and there are always inherent biases in most studies, then how can you say you do not dismiss standard medicine? It seems to me you are very suspect of most research. Regarding most physicians, you question their need to follow guidelines that you find questionable.



So either you find most research and clinicians questionable or you don't.

Nancy, I think you are exactly right - experiences with doctors vary widely.  Some of the stories on this board break my heart.  

I did chemo first, so I didn't really have an opportunity to research MO's.  I interviewed 4 BS/PS and 3 RO's to find the teams that I wanted.  I am seriously thinking about going to the Block Center to get their opinion on my treatment and survivorship plan.  I think any MO who thinks that HT is all you need for a survivorship plan is doing their patients a big disservice.  (And I say this as someone who takes her Tamox faithfully.)  

On the other hand, I've met patients who didn't know what chemo they were currently taking.  I feel for them, I really do - cancer is freaking overwhelming.  But at the same time, it's better if the patient commits to learning as much as they can.   

ONCE AGAIN, we remind you that these forums are for civil discussions only. If you can not read this thread and comment civilly and respectfully, we advise you to MOVE ALONG TO ANOTHER THREAD.

If these rules can not be abided by, we will lock this thread so no one can post.

--The Mods

Yes, Keith Block is amazing!  I think his approach is the future of cancer care - he does all of the conv treatments, but also does a lot of integrative/alternative therapies as well. It's exciting stuff.  He has a book, Life Over Cancer, that is amazing.  So much info - you can't really read it all in one sitting.  But so useful to have!!!

Oohhh, what was said that made the Moderators threaten to lock the thread?  Someone PM me!  

I don't get the nastiness on these alt threads.  So odd. 

Its taken 2 days but i have finally got through your thread AA. I understand that you are trying to discuss a treatment option, and encourage thinking in regard to a possible alternative treatment choice. I am really grateful for some of the information here..especially the post regarding oncs having to offer standard treatment, once, if not twice, record it, then can discuss alternatives..very grateful for that information. I wont feel as guilty, as i tend to do, when pushing for what I want. I was talked out of OA, offered chemical OA instead, then talked out of that by onc, with the reasoning that he has to look at long term QOL with me...huh?...im stage IV...I had a number of docs on OA and tamox survival V tamox alone etc, but lost when last computer crashed. I have had info withheld by oncs, and very dismissive/paternal meetings. So on that point, you are making a very valid argument. We need detailed information before committing to treatment, and we dont get it, unless, maybe, we are health professionals, or in the field?, but for lay people like me, info was scetchy/side effects down played/condescension rife. I understand your need to repeat your question, hopefully others will start asking questions of their health teams.

On the HER+ issue, I hope the trial results result in a helpful, less toxic option for all.

Greetings, new here, have been reading for a while and this topic prompted me to register.  Thank you AA for bringing this issue to the forefront and my apologies for making this post personal.  I find myself at yet another crossroad on this path of no return.  Despite my being 55 and not having had a period for more than 2 years (chemo induced menopause confirmed by ob/gyn), my onco vigorously opposes switching me to an AI without first giving me Zoladex (I've had two endometrial biopsies since starting tamox).  He is adamant about this issue and even refuses to look at my hormone panel results.  How many Zoladex treatments he has in mind, I did not ask him, because I am so very tired of taking these potent drugs with all of their inherent SEs.  Also, what I've read here at BCO about AIs makes me apprehensive to say the least.

AA, my onc's extreme reluctance to pronounce me post- menopausal concurs with your statement that ovaries will continue to produce estrogen well into our 50s and 60s.  In spite of my ob/gyn conclusions, the onco will not take any chances.  At my last appointment, I blurted out that I would read up on Zoladex, but thinking instead to resort to O/A, as I cannot imagine having to take Tamox or AIs for the next 10 years.  He did not comment.

Had I been made aware that it would come to this, do you think - in light of the Oxford data you just posted - that I would have opted out of chemo + rads and have the oophorectomy done instead. ABSOLUTELY, YES !  I have incurred long term permanent damage from chemo and rads that I would trade in a heartbeat.  At no time was a treatment plan (what, why, when, how) presented to me, let alone time to reflect on all of this.  I was told you get this chemo, then that rads and then this HT and like so many sisters, I was too shocked with the dx to react to any of this.  

What I would really like to determine is:  Am I or am I not post-menopausal and how do I find the answers I need to make the right decision for myself, if both the ob/gyn and the onco cannot even agree on my menopausal status ?

Being NP, I thought at first that this discussion did not really concern me.  However, I find the data from Oxford you just posted very troubling

I would be immensely grateful for any feedback you may have,

Kind blessings

P.S.  I had a hard time getting through this thread, if the person who said that O/A would not be suitable following chemo could direct me to some references, it would be greatly appreciated.

Edited