TRIPLE POSITIVE GROUP

Ok I am getting confused here all this talk off and on about a hysterectomy is getting me real confused my oncologist has not mentioned this to me at all .  I am on tamox and that is it. I am still pre-menopausal she said. But most of you are taking injections to shut down estrogen and some are getting a hysterectomy and here I am not getting any of that.  Should I bring this up to her?

SpecialK did you have trouble getting your insurance to cover it. I was told they usually start with Fosamax (sp). I really am worried about the pills due to acid reflux in the past and on chemo. (Was on 2 drugs for reflux on chemo. Prilosuc never worked for me, ever). BTW I think the trial is for high risk for recurrence. I do believe I'm considered moderate risk even though I was stage IIB with a big tumor. I had no nodes so I believe that makes me moderate.

ang7894 you may discuss these with your onc but these are options. Typically you get Tamoxifen if your premeno unless you can't take it for other health issues. Then the option is shutting down the ovaries with drugs and going on one of the AI. Usually removing ovaries are recommended if you are BRCA+. But every onc has a different approach. You might want to discuss why your onc is choosing this path of Tamoxifen for you but this is pretty standard.

lago - my insurance covers the Prolia fully - I just have a small co-pay.  When I had the first injection they had not billed insurance yet so they had me sign up for a card from Amgen, the manufacturer, in case it was not covered or my patient portion was too high.  Here is a link for the patient assistance page:

https://www.proliaplus.com/

I cannot take any oral bisphosphonate drugs either - I had reflux surgery in '95.  When I first started to become osteopenic after hyst/ooph my PCP put me on Actonel and even though I followed the directions I had wicked burning in the esophagus - I didn't want to compromise the previous surgery for reflux, so I switched to Boniva since it is taken less frequently.  Same deal.  So, I did nothing other than calcium and weight bearing exercise and remained stable until breast cancer treatment.

It looks like the D-Care trial is full, but the study is ongoing.  I think you would be classified as higher risk because of the Her2+ aspect.

lago - I see what you are saying, intermediate because you were node negative according to this sorting criteria.  I'm thinking with my high-risk node positive brain, lol!  I was thinking generally higher risk because of the Her2+ aspect, when compared to ER+/PR+/Her2-, not specifically categorized.  Are you concerned that your insurance will not consider you high-risk enough to cover Prolia, or were you specifically referring to the trial?

lago - I too had to negotiate a labyrinth for reflux treatment.  Mine was complicated by the fact that I never had heartburn at all - I had chest pain, so all they ever did was look at my cardiac function which, of course, was normal.  What I actually had was esophageal spasms which felt like small heart attacks (nightly), and 8 cases of aspirate pneumonia in five years.  During this time I had an active duty military spouse and two toddlers!  Good times! Things finally reached a bit of a crisis point when I aspirated a caustic antibiotic and burned a stretch of my esophagus so badly I didn't eat solid food for six weeks.  I was finally diagnosed with a barium swallow - they actually stopped the test when they laid the table flat and all of it came back up in my mouth.  I had no GE junction closure at all and a really big sliding hiatal hernia.  I had a bunch of my stomach up in my chest.  None of the oral meds worked for me, I was considered maximally medically managed (finally!) and eligible for surgery.  This was coupled with three long-distance military moves during 1992-1995, so I kept having to re-start diagnostic testing every time.  Sheesh!  This surgery was super beneficial for me because if I had continued to aspirate stomach acid into my lungs I probably would have ended up on oxygen.  Not good!  I have no idea if my insurance approved Prolia with no issues due to this lengthy history, or simply because my MO asked for it.  Is it possible for your docs to do a pre-treatment authorization to see if it would be covered?  I definitely would not do the oral drugs with your history of persistent GI problems.

ang ~ I would definitely say that most of the women on this forum ARE NOT having their ovaries shut down. I am, and I think a couple of other people are, but it doesn't really seem to be the norm. There is a study right now looking at that following options {the SOFT trial}: Ovarian suppression + AI, Ovarian suppression + tamoxifen, and tamoxifen alone - the study includes only premenopausal women. The study was supposed to have initial results at the end of last year, as it's been going on for 10 years, BUT they didn't meet their primary endpoint of a certain percentage of recurrences, in other words ALL groups are doing better than expected, so that's good news! So anyway, right now they aren't really sure which option is "best" and the one most common for pre-meno women is tamoxifen alone. I am on ovarian suppression {zoladex} and tamoxifen, and honestly so far it hasn't been too bad, thankfully. AIs are harder on the bones, heart and brain, so even though I am having my ovaries suppressed I am being kept on tamoxifen which has protective effects on those parts. Actually, a lot of times when younger women are given a hysterectomy they are actually kept on tamoxifen for those very reasons instead of being moved over to an AI. I think most oncs think that in the absences of the BRCA gene or some other complication with the ovaries/ uterus a hysterectomy is pretty drastic. I hope that helps a bit!

Jenn I got pain their too! Im asking doc for bone scan but Im on Tamoifen& get pain 

Go outlaw, here are a couple links to trials .

http://www.clinicalconnection.com

https://www.breastcancertrials.org/bct_nation/home...

Lago,when mine dropped, but still in normal range, my pcp prescribed actonel. I was over taking pills and meds then, and annoyed that I was normal and he still wanted me to take it, so I never took it. At the same time, I had ONC appointment and mentioned it to him. He said not to bother taking it as he automatically gives Prolia when he puts patients on AI. I asked about coverage and he said it is no problem when he prescribes it. Not sure how he does that, but maybe your onc can help?

 I had pretty much decided that I was going to fill the prescriptions and not take it and just start telling them it was giving me gastric issues. That seems to be what gets the approval for something else. I know that is wrong, but......

Of course, that was over a year ago and I am still on Tamoxifen, lol. I'm not bringing it up, although I am due for a scan this year.

FluffQ, does that mean that you already tried the A.I.'s? i was on A.I.'s, for 6 months, and i didnt even know then about what it might be doing to my bones. talk about informed consent! Icould not tolerate them, however, and did tamox for another 5 mos or so, and now am back on femara. I did do the prolia shot, and didnt notice any thing except the injection site stab! like the neulasta, i think it should be warmed up first. My onc's nurse asked me today if i am ready to have my port removed yet... that made me feel so great, i thought they would never ask!

Hello Ladies, I havent post anything lately but ichecked daily. I love this thread, all of you ladies are awsome.  i learned so much from all of you .  I am four months out of chemo my left side upper tummy been giving me  hard time.   Had CT and PET scan didnt show anything.  My onc told me from the beginning it has to  be gas but i asked for scans anyway. my onco told me to take prolisec didnt help.  it not painful but i can feel like it there....  when i take fiber choice tablets oh boy i release so much  gas (sorry TMI).  i try not to think too much about cancer, but my tummy ache make me think of cancer everyday.  i will see my onc today n will ask him what else I can take to get rid of this pain.  Any of you ladies had tummy issue after chemo??? thanks ladies!

...i had told my oncs nurse i would rather wait a while longer before my port is taken out, but it gave me more confidence in the fact that they think i am not likely to need to do chemo again, any time soon! She also asked if i am ready to do a colonoscopy. NOOOO! not any time soon! But today i am meeting my new breast surgeon, since i started a grievance process against my old one. so until i get that done, no more looking around inside me with invasive procedures that could go very wrong. i am sure everyone there has heard about my problem with old bs, and i dont want them to slip, and i end up with a colostomy bag, just to get back at me. isnt it terrible? but that old bs woman is a darling of tx center, and i am most emphatically NOT a darling of there. apparently, i ask too many questions...hmmmm. i go in to meet the new one, because  i had been telling them about two lumps since november, and so, during my last mammo in january, they did ultrasound after, then us guided biopsy. benign glandular tissue. great. but why are they palpably bigger, now, in the last two weeks? guess i get to go find out today. and see how willing my new surgeon is about answering my query's. oh, and ashla, i did my very first yoga class ever! it was great! Previously, when i was about 14, i learned poses from a book i found, and even if i didnt do it right, i am sure it has made me more flexible and relaxed over the years anyway. and the class i went to was free, at tx center, but there is a studio within walking distance from my house, and a gym i am going to start soon too a couple blocks away. living in la, its nice to have so many things i dont have to drive too. ok i better shut up now!

Thank you lago, i noticed i have constipation here n there, but i drink more juices n take fiber choice tabs i think it helps me with constipation but my tummy pain or irritation is still there.  i can feel it when i breath, walk, sit down and when i sleep.  it doesnt hurt that bad, but i hate the fact that i can feel it there.  Yes i will ask my Onco about seeing gastroenterologist. Thank you!

Any of you ladies take curcumin or tumeric supplement? Any sugestion on the brand that i should buy?  thank you!

soriya - Lee A used Doctors Best Curcumin

http://www.amazon.com/Doctors-Best-Curcumin-BioPerine-120-Count/dp/B000BD0RQS

kathec they used the port instead of an IV in my arm. They won't do an IV on the foot for that procedure. Too risky for infection.

Sorry you guys were the special few that got the lung punctured. I thought it might happen to me because they kept telling me how tiny I am then told me I was getting a juvenile port because I was so small and not a lot of realistate.  My port surgeon I think was my favorite surgeon. Pretty much that is all he does.