Biophosphonates (Boniva) as adjuvent therapy

Macchick

Hi, I really didn't know where to post this query so I'm putting it here hoping folks might see this.  I just got back from my onco's office and told her today that I'm definitely opting out of Tamox.  I had bilateral mx almost 12 weeks ago with no need for chemo (oncotype 13) and no need for radiation.  So I went to see my onco this morning to confirm I'm opting out of Tamox (even though my tumor was highly Er+/Pr+) because I do not believe it is the treatment for me. She wasn't happy about this of course and I told her I'm doing some natural stuff (which if you're interested check out the "Natural Girls" thread under the Alternative topic). She didn't write any of what I'm doing down so I guess she figures it doesn't work or is irrelevant.

 Anyway, my onco then suggested that I consider being in a trial for biophosphonates as adjuvent therapyfor primary breast cancer.  What this means is that I could either get an IV infusion or pills for 3 years of the ingredients found in Boniva (at much higher dosage).  She quoted an Austrian study that showed a 20-30% decrease in bone mets for people who took this stuff.  I believe there was an article in the NYT about this so please forgive me if there was already a thread on this.  

The side effects of biphosphonates don't seem to be as bad as Tamox - mainly nausea, vomiting, kidney issues, and in rare cases osteonecrosis of the jaw (which can't be good).  Anyway, wondering if anyone out there has heard of biophosphonates as treatment after surgery (as a study).  Is anyone participating in this study currently? 

She also told me the symptoms to wach for with mets and I asked here where the line is between vigilance and paranoia (one symptom she mentioned was a cough!  so, swine flu?  mets?  or just a cold???).  She didn't really have an answer for that other than if something doesn't go away, it should be a concern.  Additionally, she said early detection of mets doesn't make a difference in your ultimate prognosis.  I don't know about that.  I guess the onco's job is to do medications, but I always find it disconcerting to see her because the visit is never what I think it will be.  

So, sorry for the long post but, as I said, I don't like seeing the onco and just wanted to run some of what she said by this group because you've never let me down in terms of your helpful, insightful comments.  Thanks, gals.

Melody

Harley44

I think this is very interesting, because I have been wondering if I should start taking a bisphosphonate.  When I 1st saw my onc, he told me that since I already have low bone density, 'if he were my primary care dr.' he'd recommend that I take a bisphosphonate.  I guess the main thing that concerns me about all these new trials that are coming out is that it feels like we are guinea pigs, since no one really knows what the end result will be, since there haven't been any studies for any of these 'cutting edge' treatments. 

Please keep me posted on your progress.

Good Luck!

Best wishes,

Harley

ddlatt

i finished my last chemo treatment 12 days ago. when i had a follow-up checkup with my medical oncologist, he said the same thing  about mets, that i'd be getting no bone scans or body scans unless there's a serious symptom of recurrence (with the exception of his recommendation of a chest x-ray every six months). he said that early detection of mets doesn't affect outcome. that sounds completely nuts to me. i'm going to run that by my second-opinion onc at UCSF. 

i opted out of the zometa, even though my UCSF oncologist highly recommended it because i have osteoporosis and because he's confident about the role of zometa in reducing risk of breast cancer recurrence. but the risk of osteonecrosis is not worth it to me, even though i realize that risk is low. having seen photos of osteonecrosis, i just can't go there.  my local medical oncologist said he's had eight patients develop osteonecrosis in the last two years and one died from it, and he highly recommended i not take the zometa. but everyone is so different. maybe all these patients had serious dental problems, which is a reason not to take zometa. i don't have any dental problems.  but i had a double mastectomy, chemo, and will be having 35 radiation treatments, so that's as much as i'm willing to do right now with treatment.  my UCSF onc told me that clinical trials have shown that zometa can prevent breast cancer recurrence by 35% in some populations. here is a link for that info:

 http://www.medicalnewstoday.com/articles/121720.php

tkone

Macchick-

I am not doing the trial, but am doing Zometa infusions every 6 months.  I asked my doctor if she would prescribe it for me.  My understanding is that about 9% of us will develop bone mets without Zometa, 6% will develop it with Zometa (hence the 35% reduction noted above).  So far I have not had any problems other than some flu like symptoms on the day after the infusion.  The jaw thing definitely scares me.  I have good teeth and not many dental problems, but that still isn't a guarantee.  At this point, I think it is worth it or at least I should say that I hope it is worth it.  Having gone through chemo, radiation and now taking Tamoxifen, I feel like I have done everything I can to drop my recurrence rate down so why wouldn't I do this if it can get me 3%.  It is a numbers game for me as well as a faith game.  But it is decidedly a risk and not one that everyone is comfortable with.

Good luck with your decision.  I'm sure you will make the right one for you.

samiam40

There's a thread right here in this forum called Roll Call: Anyone in the Phase III Trial of Bisphosphonates.  Lots of us are in this study.  Please come over and check it out.