TRIPLE POSITIVE GROUP

lago - I need to regrow/thicken hair, brows, lashes - hoping I will see it come back - I had extensive thinning on Femara/Arimidex

I had a total hyst/ooph nine years prior to breast cancer, at 45. Didn't stop me from diagnosis, with 96% ER+. I don't know how much estrogen fueled those receptors since I doubt I was making much and had strong menopausal SE for all of those years, so the aggressiveness of my tumor and pos nodes may have been influenced more by the Her2+ aspect, impossible to know.

BB - it is yet another girl part removed as a result of this diagnosis, natural that you are a bit sad. Hoping that after a while you will feel relief instead. In the long run I am glad to not have to worry about having ovaries anymore - either as a source of estrogen or a location for mets.

babygurl-I missed your symptoms too, but had a lot of bad side effects when I moved from weekly to every three week herceptin. Felt like I had a terrible flu, and was wiped out. They extended the length of infusion from 30 minutes to 90 which helped tremendously. My Onc also said I could go back to weekly or every two weeks if needed. His belief was it wasn't when you got it, but that you got it.

Kona-I had to chuckle as I have been known to semi invent, or enhance something because I knew it would get a test done, lol. I do try to use the two week rule. If it hurts for more than two weeks, it is time to check it out.

Specials-so glad you are doing well

Hi!

Are you having Herceptin without any chemo (Taxol? Taxotere? etc.)? If so, yes, you would be unusual. Plenty of triple positive ladies have neoadjuvant chemo which includes Herceptin, but for such a (relatively) big tumor, yes, it is unusual to have Herceptin without any chemo before surgery.

ElaineTherese I go back to my Onc tomorrow morning so I will find out exactly. When discussed with my surgeon last week he only mentioned the Herceptin. That's why I thought it was strange because after researching, it was mentioned that Herceptin is almost always given with chemo. Thankfully I will know exactly what I'm doing tomorrow!

Ado sorry can't advise you. But it's good you asked.

Re: ovaries removal. Dani had the ovaries removed, she had an oophorectomy/Hsterectomy right after dx with BCMets. BS and MO did not recommend breast removal, at the time of dx or since. They don't believe in it. and they belonged to a Large Cancer Center. But after METS, they told her to rush and she had this surgery. It was done laporascopically in her case, she went home the next day. She already had the SE of Tamoxifen. She had the hot flashes, (it was terrible to see her go through this, when I had not even gone through it yet). And there was more of it after surgery, but it did get better with time. She does have some dryness, which a cream could help. That's my two cents. Wish you a quick recovery.

At ASCO2016 there is much discussion of the results of a clinical trial MA.17R re the efficacy of 10 years v the current 5 years on Aromatase Inhibitors( Letrozole). Curious to see spin on this. Listen carefully....

fightergirl711

http://www.medpagetoday.com/MeetingCoverage/ASCO/5...

http://www.ascopost.com/News/41622

http://www.medpagetoday.com/MeetingCoverage/ASCO/5...

But there will be lots more on the subject to follow.......

also can read the article here on the New England Journal of Medicine: http://www.nejm.org/doi/full/10.1056/NEJMoa1604700...

Ashla I think this is an individual decision based on side effects. If I understand this correctly the benefit is 43% of what ever risk you have after the first 5 years. So lets say my risk is 8%. I think taking it another 5 years will reduce it to 5.4%

IMO that may not be huge if you are having major SE. This is why the article states those who are having major SE and bone issues need discuss with their MO about continuing or stopping. My gut tells me my MO knew about this info last month when she decided I should stop due to the broken metatarsal and my osteoporosis in my back not improving (although not getting worse while being on Prolia.

hi All! haven't been on this thread in forever....I read the last few pages but this is a very active thread.

I wanted to jump in on the OS/AI tam discussion. I recently had a transvag ultrasound that showed thickening of the uterine wall resulting in a biopsy (no results yet). I went off Zoladex a year ago with no periods returning, I thought I was in the clear until the u/s, it showed follicles which basically says I'm still pre-menopausal even though I am not getting a period. I went back on the shots this week. My point is that even when you are not getting a P if you are still younger than natural menopause age (I'm 47) you can still be in pre-menopausal. if I had switched to an AI I would have had zero protection

My ONC is adamant about being on OS even if I stay on tamox (tried 2 AI's and both were hell) I am also on the 10 year plan.

Mind you with the new uterine issues they may insist I move to an AI- not sure. Ill update after my gyn appointment tomorrow

adotson

That's pretty much the standard of care... There are 2 widely used protocols for us triple positives these days and yours is one of them. Sometimes they are given AFTER surgery.

You will be getting even more meds....some infused..others before, during or after treatment to help with allergic reactions, nausea etc..

It is all doable. My advice is to start a diary. Write everything down . Particularly side effects( including psychological) during and daily after treatment. It will help you track any trends and perhaps avert troubles.

Best wishes....

adotson79 That is the same treatment I have been on, except I don't get the Carboplatin (I just get THP.) Originally the plan was that I would do four rounds of AC after these four rounds of THP, then surgery. But THP has been so effective that my MO and surgeon want to go ahead and schedule surgery. I have my final round this week, then surgery and I will know after surgery just how effective its been. Hoping it goes well for you! I agree with the advice above, my side effects have been very similar (and occur very near the same day every round) so keeping a calendar or journal helps a lot! I know for me, just having a plan of attack helped so much.

Quick question...the subtypes, Luminal A and Luminal B and the other two...the way I'm reading it Triple Positive is the same as Luminal B. Is that right?

Jumpship...

Not necessarily....it's way more complicated. This is the clinical trial that I am in....

http://www.onclive.com/web-exclusives/her2-subtype...

Ashla- How do then determine what subtype you have if any? Is this a new test?

Lago and ashla- on the study, I was talking with my NP friend tonight after reading a summary on Medscape. We all pretty much thought the same way. It needs to be looked at individually. In my case, I am more concerned about distant recurrence since I had the BMX. That appeared to be less conclusive, unless I didn't read far enough into it. My onc had said he wanted to see the actual results when I saw him a couple months ago. But he felt it would need to be a significant Percentage to recommend me staying on it for another five years..

I will have a bone density done before I see him and my ps does an MRI to check the implants every two years so I will have that before year end. If all is clear, I will likely stop.

Personally, the pros...hopefully feel pretty good again, and minimize arthritis issues which seem to be exacerbated since I started Arimidex.

Cons...losing the small sense of security since it is the only protection. My NP FRIEND POINTED OUT THAT I HAVE METFORMIN (oops wrong button) also which could be helping