TRIPLE POSITIVE GROUP

deni1661

Jagger 2015, sorry you have to be here but this is the best place to be for support, understanding, information and friendship. I'm happy to hear you are doing well after treatment, you seem very positive which is so important to your recovery. And you have a good support network which is a bonus!

I found it interesting that you did not know you were HER2+++ until after surgery. I assumed testing for HER2 was automatic. Unfortunately this diagnosis does bring challenges but I'm finding through this group many long term survivors, strength and hope. I too can be obsessed about research (more so initially) but I now limit myself to breastcancer.org and sites relative to nutrition and wellness to keep cancer away.

I am curious - your profile doesn't mention chemo. Did you have chemo or just Herceptin? The reason I ask is that I did Herceptin and Perjeta, no chemo in a clinical trial. Just looking for others who have done the no chemo treatment; there isn't much info available about this approach for triple positive.

Best wishes, hugs 😊

deni1661

Coach Vicky, your post gave me a BIG smile! I can't wait to get out of these sports bras. I have my revision surgery Nov 30 to even things out, a little lift and a few tucks. My girls will be more the size of oranges but it will be nice to wear something pretty again.

Hugs to all

Kattis894

I think listening to Christ Beats Cancer is good regarding the diets but it sort of ends there for me personally. We are all different. We believe different things, some wants to know everything there is, some do not and so forth. Jagger, I can relate to your sudden fear, if I read too much I just think it is the end so trying to keep it to a minimum at this point. Saying that I still want to know your sources...:) and keep informed...it is such a double edge sword...knowing and not knowing...I keep in my head this is not going to recur. Period.

At work I try to keep it a "cancer free zone" never bringing it up so at least I have a space where I am too busy not to worry, knowing damn well it can happen any day, so just trying to enjoy the moment and "forgetting" about it at least part of the day. Sending love to all in this helpful group, the best I have found so far during this journey.

Cherry-sw

Thank you, T-Sue, this birthday was sort of sad, the cat is ok though even though they shaved it around the tail, looks funny

Cherry-sw

Jagger2015, welcome to this group, sorry you had to join it. I red everybody’s responses trying to add something new and realized there is nothing much to add. This group and the forum became my liveline, I feel guilty for pouring everything here but I was never waved off and was always met with comfort, understanding, competent answers to me questions and tons of compassion. I am so grateful for all this, sometimes when I think what if I had never found this forum and imagine going through the chemo all on my own, I keep telling myself I would have found it evetually. I know I write it all the time but this is just how I feel.

It is obvious we all would like to know what research you are referring to, even though I can only take it in portions, sometimes I just cannot take it anymore and sometimes I just have to know. I believe I am right now at this point where I realize that no one can give you any straight answers, because no oncologist knows for sure how an individual bc would behave. I am rather prepared to be over-treated but the oncologists I met told me that I mat already be, they just do not know. This knowledge resulted in me started to take anti-depressives but I felt that I hit the bottom and there was no other way but so far I am glad I did it. Never thought it was for me but extreme times call for extreme measures. If you need support, comfort, just a place to vent, this is a thread for you

Cherry

Cherry-sw

coachvicky, you always make me smile, this is just so funny. I remember you wrote a similar thing to me about people’s color start showing, it was so true. I definitly am dissappointed in some people

Cherry-sw

Thank you HapB!

SajeScents

Thanks, SpecialK, for your posts.

I was just given the choice between Prolia or generic hospital infusion of bisphonate for my bone protection (borderline osteoporosis) and on anastrozole and Herceptin currently. You've helped me decide for Prolia, which I will hopefully receive after my Herceptin infusion this coming Tuesday. I am so glad to learn that your bone density has returned to normal. That's motivation for sure!

coachvicky

SajeScents

After my experience with 2 generic Arimidex, I went with the brand name. I feel the same about the Prolia injection.

My sister-in-law (not a cancer survivor) takes the Prolia injection. She, too, has reversed her bone density lost.

My MO wanted me to wait 21 days after my last Hercepin before getting the Prolia injection. He is a one at a time guy. I bet he eats is food separately (meat, then beans, then potato ...). I don't know. I made that up about him. He just never wants do multiple things to me.

Vicky

SpecialK

saje - glad to help!

coach - it is actually not a bad approach with Prolia because some can experience flu-like symptoms after the injection. I have not had this happen, and I just had my 12th injection. My MO had the same approach with separating all treatments to suss out side effects. Surgery, then a break, then chemo/targeted treatments, then a break, then rads, if needed. I had a break between chemo and letrozole, not sure how he would have approached rads and letrozole since I didn't need rads.

coachvicky

Thanks SpecialK.

I did have flu like symptoms. I got the instructions AFTER the injection on how to deal with this. My MO wants me to double my calcium one week before injection and two weeks after injection. He said for some women it helps with the flu like symptoms.

I don't know if it was or was not the injection that caused the flu like symptoms. I think my body is just tried from all of this. When the Nurse brought the Prolia to the station I almost walked out and said forget it. I think emotionally I had enough at that point.

Why did I stay? This was the Nurse that always gave me my Neulasta injection. She has been kind, tender, listening every time I saw her. Her past demeanor with me was the only reason I stayed. It was early morning and I knew if I walked out, she'd have paper work to do about it. I didn't want her to have a crappy day.

Strange how that played out.

Vicky

Kattis894

Does anyone have any information about the importance of CpR? I thought this was a very important factor in predicting recurrences but just heard the opposite making me confused. My onc explained only 20% of patients receive CpR and I was not one of those unfortunately but my tumor shrunk about 50-60% at least. He also said that hormon treatment might take care of the rest being 100% ER+. He seems to put more importance of the Ki65 percentage, mine was 6% after treatment, low but still not 0%.:( In my mind this means that any lingering cancer cells have half the strength and grow less quickly than before treatment, but thought I would ask you ladys if you have any updated information about the importance of CpR and what it really means. Also read somewhere that the PR+ factor also has some importance but not sure why at all.

Taco1946

I too did not get my HER2+ status until after I had had my lumpectomy and finished brachytherapy. I don't know if no tests were done on the biopsy or that they just found it on the final path report. I remember my surgeon saying at my one week follow-up that the full report wasn't back yet (Surgery was Dec 22nd so don't image the lab was running fully staffed). I don't think the initial treatment would have changed but team did add chemo and herceptin much to my surprise because I went into my first appointment with my MO just thinking I would get AI's. Yes, the HER2 threw me too. Still have 4 months of herceptin and who knows how many years of AL's as the recommended time keep going up. Keep hanging around and these ladies will be there for you.

PoseyGirl

Hi Kattis,

I know SpecialK can speak well to the PR thing (mine is very low), and she posted a link about it.

Re: Pcr, this has obsessed me since my pathology in December. I did receive pcr and everyone was happy about it. Then I read that it doesn't seem to have the prognostic value that pcr holds for other subtypes. It is still considered a positive thing and may make a little difference; the jury is still out on how much. But triple positive has other targeted therapies after the main treatments, so that is why there may not be a huge difference between pcr and no pcr - because there are more treatments after. I would love to have more input on this

Kattis894

Posey, I would be thrilled about it if I were you. You are amongst the lucky 20%...:) I think it is important because you know the treatment has worked a 100%, how strong ER+ and PR+ are you? Do you know? Ok low PR but ER? I will try to find the link going back in the thread.

Suburbs

Hi. On the subject of PCR, for triple positives, currently, a PCR is not necessarily an indicator of improved DFS or EFS. The science is not in yet. The article on breast cancer.org, "If Chemotherapy before Surgery..." does not cover triple positives specifically. It's a subset. Also, addition of perjeta is known to improve PCR; however, research has not supported the notion of improvement in DFS or EFS. The science is not in yet.

I wish I could properly post links from the iPad. Anyway, the following is a list of resources on the topic:

British Journal of Cancer (2016) 114 - Abstract of article: Pathological complete response and prognosis after neoadjuvant chemotherapy for HER2-positive breast cancers before and after trastuzumab era: results from a real-life cohort

Journal of Clinical Oncology volume 30, number 15, May 20, 2012 - Definition and impact of pathologic complete response on prognosis after neoadjuvant chemotherapy in various intrinsic breast cancer subtypes. - PubMed - NCBI

Clinical Advances in Hematolgy and Oncology Volume 14 Issue 7 July 2016 - Long-term Outcomes of Neoadjuvant Treatment of HER2-Positive Breast Cancer

After wading through the above and a Brazilian journal of medical research, the idea of pursuing nerlynx seemed to make more sense.


PoseyGirl

I saw a study by H Bonnefoi in France that saw benefit to pcr no matter the subtype, but moreso in triple negative and Her2 positive (hormone negative).

I was extremely happy, Kattis, till I read that it didn't seem to make much difference. From reading more and asking a coupl oncologists, it does help, but just mildly or moderately. But in spite of this, achieving a pcr is still considered a good thing (i.e. I shouldn't feel disappointed I got there). But the good news for triple positive is that other targeted therapies help to keep working away..

Oh, and p.s....I was 90 percent ER, and only 5 percent PR (so could be considered negative there)

Suburbs

Hi Poseygirl, thanks for the reference. I'll look for it. Anyway, on the PCR subject, it seems to me that the takeaway might be that not having a PCR is not really a bad outcome for a triple positive. For triple positives, less than 50% have a PCR.

SajeScents

Coach Vicky and SpecialK, thanks for your replies about timing of Prolia and the calcium. Very interesting! I will discuss with my MO on Tuesday morning, and maybe hold off until a tad later. I am glad I found this group of really savvy members!!!

Cherry-sw

To all of you in US, we have been watching CNN non-stop since my husband came home and told us about the Las Vegas shooting, our thoughts and prayers are with you. Now I saw him change the channel.

AliceAgnes

Thank you, Cherry. A lot of us are sick and tired of all the shootings, but our government doesn't care.

debiann

I think its hard to avoid some of the other organs when getting radiation. I believe the radiation goes right through you? Not sure, can anyone confirm that?

I checked with my cardiologist before deciding about rads because due to the location of my tumor, they would radiate near my heart. Cardiologist said avoid rads if possible, so I did an mx instead and being node negative, I could avoid rads.

These are the things I wish they would explain better BEFORE treatment begins.

debiann

Did they say there is any problem with your lung now or just that it has received some radiation? I hope all is well with you.

debiann

I am so sorry to hear that Hap. Hopefully its just something from rads. How was it detected, are you having any problems?

Cherry-sw

HapB, I hope everything goes well in December, all positive thoughts your way. Cherry

deni1661

Hapb, that is disappointing about your lung. So sorry to hear that. Sending prayers your way for a good report in December hugs

Kattis894

Why would you have to wait until December to get an answer on this growth? seems like an awful long time? hoping for good news regardless but just wondering because waiting if one of the hardest thing in all this...

Mandeola

hi gang,

New to this forum as a triple positive gal. HapB - my RO explained I would forever have some changes on future CT scans or X-rays as the radiation would affect the apex of my lung. It is caused by the scar tissue created by the radiation. She also discussed the breath holds helping in moving my heart further away from the radiation. As she said every centimeter counts with radiation so breath holding helps distance the heart from the source a bit. Hope this helps

testmax

Coach Vicky, You are such an inspiration. Good luck with your journey.

RachBC

Hi, does hair grow on Herceptin and Prejeta? Anyone tried that?