TRIPLE POSITIVE GROUP

BBwithBC45

I'd like to keep my ovaries, but after many years of on-and-off cysts on both sides my right ovary ballooned up within a couple of months and I got scared into removing them both, together with tubes. I'm 46, but haven't had a period in over a year since my chempause.

My oophorectomy is this Monday, together with fat grafting for my reconstruction. I'm a little nervous and for some reason sad to see my ovaries go even though they are no longer functional.

SpecialK

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.

amylsp

BB - I am almost 6 weeks out from my ooph, and definitely feeling relief that the decision is behind me. I felt nervous and sad as well. The ovaries might be small, but they have played an important role in our lives, and it was definitely sad to lose them. Good luck with your surgery!

Anonymous

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

adotson79

So glad to find this board! I am also triple positive, ER+ 90%, PR+ 95%, HER2+. I was recently diagnosed with IDC Grade 3 on May 16, 2016 so this is all new to me. Even though I have a medical background it is still very overwhelming! I have been doing a ton of research online and was just wondering if anyone else has proceeded in TX the way I am. My Onc and Surgeon both have agreed to this... Started Tamoxifen immediately the day after diagnosis. Having port put in this Thursday, then will start Herceptin alone for 3 months. Then will have surgery. My main tumor is 2.5cm but I also have 2 other spots that showed up on my MRI. Is Herceptin before surgery more uncommon for most?

ElaineTherese

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.

lago

adotson79 Things have changed a lot since I was diagnosed in 2010. I did surgery first but now many do Herceptin, Chemo before surgery. I would if you can get a 2nd opinion. It's pretty good idea to get a 2nd opinion when you do any surgery or have a serious diagnosis like this. There is more than 1 way to go but you need to know your options and choose your risk/reward

adotson79

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!

adotson79

lago... I mentioned a second opinion which no one was opposed to. But I was told that my case was already presented at our weekly Tumor Conference at the hospital I work at and all physicians present agreed on the TX process that my surgeon mentioned. I will follow up with my Onc tomorrow though so I'll have all the details then.

momallthetime

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.

ElaineTherese

adotson,

The two most common regimens given neoadjuvantly for triple positive are Taxotere, Carboplatin, Herceptin, Perjeta or Adriamycin + Cytoxan and then Taxol+ Herceptin + Perjeta. As you can see by my signature, I did the latter of these two regimens. Perjeta is the new "wonder drug" for triple positives; make sure that you get it along with the Herceptin. Good luck with your meeting with your onc!

ashla

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

ashla is it live streaming somewhere? Or is there a recap? Thanks!

ashla

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.......

fightergirl711

Thanks ashla! A friend of mine who works in research at Harvard (also a very recent BC patient) was implying that she'll be taking endocrine therapy for at least 10 years, and that I likely will be too. I guess it's official!

lago

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.

ashla

Lago..

Agree 100%... I read the comments of the MO's on the Twitter feed and that was it essentially. There is no overall survival benefit.

They all commented on the big " If " the patient tolerated the side effects! A big if....

A broken hip can be deadly..

Breast cancer treatments are becoming much more individualixed than even when I started this process. We'll all need to stay aware of the latest information in order to make these decisions..

BTW. You did great getting through the 5 years..I only got through 3 1/2! On tamoxifen since December. Every other day... My life was getting very dangerous on the AI's...

And this from someone who kinda sailed through that first year. We're all different .

rozem

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

adotson79

So update on my follow up with Onc today... I will not be receiving Herceptin alone as previously thought. I will be starting chemo this Monday with Taxotere, Carboplatin and also Herceptin, Perjeta. So 4 meds total.. First Tx will take 6-8 hrs then 6 hrs usually after that every 21 days for about 4 1/2 mths. Then surgery. She took me off of the Tamoxifen for now until my chemo is finished. So I am relieved to finally have a game plan!

ashla

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....

lago

adotson79 Now that's more like it! You're definately getting the good stuff!

meg2016

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.

SpecialK

I used these sheets from the American Cancer Society for each round of chemo - I found them very useful for tracking chemo side effects.

http://www.cancer.org/acs/groups/content/@nho/documents/document/acsq-009502.pdf

Jumpship

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?

SpecialK

jump - that is the way I have always interpreted it.

ashla

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...

Jumpship

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

Jumpship

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

ashla

Jump ship..

This clinical trial is done by Agendia..the parent company of Mammaprint. I had a Mammaprint assay prior to neo adjuvant treatment. Four years ago..when I had neo adjuvant treatment it was definitely not the standard of care.

But as I'm thinking about it, I really don't know which tests show whether you're luminal A/B or not or how my MO knew but he has told me I'm luminal B. Always assumed Mammaprint but maybe not..

Anonymous

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