TRIPLE POSITIVE GROUP

Motherofmany- yes, I get a lot of bloating and puffiness from Herceptin. Usually it lasts about 3-4 days and my weight goes up a few pounds and then comes back down again. I also get gassy for a few days. I feel flu-like achiness and general fatigue for a few days too.

I've only had one Herceptin-only infusion so far, but I also had flu-like aches, some fatigue, and the Herceptin runny nose. The first two could have been from my low RBCs, though, so we'll see what this Thursday brings.

I just made the mistake of looking at my pre-surgery CBC--I just had a prophylactic MX and scar revision with moderate neutropenia! Honestly, I feel pretty good overall, though, so I'm refusing to worry. One thing all of this has taught me is to worry less, since it does no good whatsoever. . . .

In other news, I've all but decided to do rads. 2/3 reduction in risk (of loco-regional recurrence) is too much to ignore. So I'll stock up on organic aloe and Aquaphor, and get used to this breath-gating thing they're talking about. Calling the RO's office next week to schedule the simulation. I wonder whether my MO will want me to start Tamoxifen now or wait until after rads. We shall see. . . .

Happy new year to all!

Kate lots of women have no or little reaction to radiation, that was the case with me, and I hope it's the case with you. I started tamox while on rad

edwsmom I had bilateral MX with 10 nodes on one side and 4 on the other PLUS implants placed. Other than cancer I had no other health issues. You need to discuss with your doctors why they want to do it in 2 surgeries. But doing it all at once for what I had was close to 8 hours. Long time to be under.

I am taking Tamoxifen for Hormonal therapy while doing Herceptin every 3 weeks. I also had a total hysterectomy and kept one ovary, but it was not related to the cancer treatment. I'm 45 and when I had asked my MO about ovaries being removed to help with lowering estrogen prior to needing the hysterectomy, I was told that ovary suppression is usually for younger patients and the percentage of decreasing recurrance by doing it wasn't significant for the bone and heart health issues that can happen

Hi!

I began my hormonal therapy prior to rads, but I take Aromasin (not Tamoxifen). Because I am premenopausal, I get a monthly shot of Zoladex, which like Lupron, suppresses ovulation. Zoladex has not made me crazy. In fact, other than hot flashes (which I'd been getting anyway due to chemopause), I don't know if Zoladex has had side effects for me. Good luck!

Mommato3 I too have read that the slow growers are more likely to spread years later compared to fast growers. But my MO still considers me high risk due to tumor size. She still wants me to do 5 more years

Hello everyone! HAPPY NEW YEAR!
I am new to the triple positives and hoping you ladies may be able to help me along my journey!

On Dec 21st, the day before my 39th birthday, I met with my future surgeon who shared with me my HER2+++ status and treatment plan. He and my MO believe I am a good candidate for six TCHP Chemo sessions followed my LUMP and RADS. I've had this chemo option on my mind as the ONLY options since I met with the docs because I trust them and I'm truly open to it. I've been meditating a lot more to help clear my mind but as I'm getting synced back into my intuition my mind and body are at a disconnect!

The idea of putting chemicals in my body has always been foreign to me (I don't even like taking headache meds) but I had sold myself on what the doctors suggested until this little voice in my head and heart will not stop and has me searching for a less aggressive approach. It just feels so counter-intuitive but then again maybe second guessing is part of the process?

I'm so so concerned with the side effects of the chemo that I keep having thoughts like "maybe I can forgo chemo and they can just take the tumor out and give me the targeted treatments...or maybe i'll only need 4 of the 6 chemo sessions and once the tumor shrinks I can demand the LUMP or MX." When I first found out I was hoping/praying for a LUMP recommendation and now I'm more excited about giving up my breasts if it means not having to do chemo!

I came across this medical review published in Dec 2014 tonight and after reading it a few times and asking my mother to help me decode it (she's a microbiologist) I feel even MORE strongly that my intuition is on point. My understanding is the reviewers feel the field should exercise caution in the over-treatment of triple-positives because are in a small subcategory of our own that has yet to be fully researched and blanketed HER2+ treatments are not customized to fit our triple positive needs. http://www.cancertreatmentreviews.com/article/S030...

On the basis of what above reported, the precise identification and characterization of a HER-2 positive/HR positive subset may be essential to avoid overtreatment, mainly in patients with small tumors who could benefit from adjuvant hormonal treatment combined to anti HER-2 agents, possibly without prolonged chemotherapy, or without chemotherapy at all. Whether the term "overtreatment" is more strictly related to trastuzumab or to chemotherapy is still to be clarified. This raises the question if, in selected cases or specific subgroups of patients, omission of chemotherapy may be the most appropriate choice and, whether or not, endocrine treatment combined with HER-2 blocking agents or HER-2 blockade alone have to be administered, even in the early setting [78]. Results from neoadjuvant trials testing the HER-2 dual blockade without chemotherapy seem to confirm this hypothesis...Overall, the above reported data suggest the possibility that a subset of small HER-2 positive, ER/PgR positive ("triple positive"), breast cancer might be driven primarily by HR status, and biologically behave more likely HER-2 negative, HR positive breast cancers: should these patients receive endocrine treatment in combination with HER-2 blocking agents, without chemotherapy? Is the administration of anti-HER-2 agent always necessary? The identification and characterization of this subset of HER-2 positive cancers may be essential to avoid possible overtreatment, and define the role of both HR and HER-2 pathways in the development of treatment resistance is one of the hallmarks for further investigation, to optimize the use of HER-2 targeting agents, endocrine therapy and chemotherapy.

Ladies, any research, resources, stories you could share to help me better understand HER+++, its successful treatments, and the creation of a more customized/possibly less aggressive standard of care would be so helpful as my mind, body, and soul come to a decision about treatment.

Also,

1. Have any of you elected to do LUMP & RADS+ Herceptin+Perjeta w/o Chemo? OR MX + HP w/o chemo?
2. Do you know others who have elected to forgo chemo or who have cut their chemo short prior to surgery?

I thank you in advance for sharing your experiences and wisdom with me!

Hi 33Triple!

Sorry you had to join us. I understand your reluctance to undergo chemo; for many women, it is undesirable to say the least. Typically, women who are triple positive and whose tumor is over a certain size get some chemo. There is "chemo light" -- Taxol + Herceptin + Perjeta for tumors that are small, but it's unlikely that you can get Herceptin + Perjeta without at least Taxol for neoadjuvant treatment. For those of us with bigger tumors (like me! 5 cm +), it's either TCHP or AC + Taxol + Herceptin + Perjeta. I ended up doing the AC + Taxol + Herceptin + Perjeta combo, and it wiped out my active cancer. I was able to get a lumpectomy, and avoid reconstruction.

I agree with debiann's logic. Yes, some women are probably overtreated and don't need chemo. But, as of now, it is impossible to determine which camp you fall into. Her 2+ is an aggressive form of cancer, and I wasn't willing to take my chances. Best of luck!

33triple one study never makes it so. The study might not have been done on a large enough sample. If it was then it would be standard care. So it sounds like more study is needed.

My oncologist told me that there was a 40% chance I would be cured with surgery alone. That's pretty low. That stat comes from the size of your tumor, biology, node status, age and how fast it's growing. Also HER2+ tumors can spread in other ways other than nodes. The younger you are the higher your risk for recurrence. You need to talk to your oncologist about your specific risks.

Also ask about Perjeta. You get this before surgery. It improves your status for HER2+. I didn't get it because it wasn't approved in 2010. I tried to get into a study though.

Remember chemo is only for a few months not forever.

Thank SOOO much for your feedback ladies!!

I look forward to reading more as it truly does help!

The thing that scares me the most about chemo is not the treatment itself but the long term side effects (although I know its gonna be huge pain in my titt and very very tough). Because I'm young, I worry about how the chemo will impact by day to day life for the rest of my life. I know I will probably never be the same and that is OK, but I'm concerned about my immune system taking such a hard hit, will it ever recover? Will I get sick all the time? What will it do to my body...will I always ache? How will it impact my strength and physical activity? Intimacy?

K8B79 if I was to forgo chemo it would absolutely be with a double mastectomy. I'm grade 3, my her2/neu is 3+, my Ki-67 is 90% so yes its fast growing. Nothing was found in my lymph nodes via MRI but I haven't had the SLNB yet. My port placement is set for Monday and I'll try to speak with my MO tomorrow when I go in for my treatment education with the nurses. I'll ask about specific risks and THP v. TCHP.

I know you are all at different stages but for those who have completed chemo how are you feeling now, months and even years out?

Oh ladies, I'm so grateful to have a place where I can ask questions of great women wearing a similar sized shoe.

I'm just going to be completely candid, because that's what I needed when I was making my own decision.

I'm concerned about my immune system taking such a hard hit, will it ever recover? Will I get sick all the time? What will it do to my body...will I always ache? How will it impact my strength and physical activity? Intimacy?

It's very likely to recover. It takes time, but the body has a way of repairing itself. I sailed through all six infusions with decent white counts and absolutely no infections, and only one minor cold, though I developed anemia and low reds overall near the end, and my liver played a little game with me after round four (all totally normal, and the liver rebounded in the way that livers do). . . My most recent CBC is all over the place. It freaked me out last week, but this too is normal for folks who have been through chemo; my MO says it should level out over the next couple of months, and I believe her, for she's given me no reason not to trust her (quite the opposite).

As for strength and physical activity: Well . . I went from deadlifting 185 and squatting 155 for reps to having a hard time walking around the block, especially during later rounds. But my strength is coming back, and in my mind it's worth the trade. Chemo fatigue is real and can be profound--as in, you'll need to plan to sleep more and be more lazy than you might be accustomed to--but it's helped by exercise (a paradox, to be sure); I've had good luck with gentle walking and gentle yoga. Gentle things for a fragile time.

As for intimacy: chemopause is real, and it can be hard. Again, I'm just one person, but my experience was that I began to experience full-on menopause symptoms after my second round. My periods stopped after one last pathetic attempt following my first infusion (honestly, this is fine by me); I have hot flashes (mostly at night), some minor joint pain that's mostly relieved by exercise, and vaginal dryness that can be relieved with topical vitamin E oil during the day and coconut oil or water-based lubricant for more intimate situations. Here's the thing, though: my MO has said that this "hormonal shutdown," as she calls it, is prognostically good for reasons no one quite understands. We'll see what Tamoxifen has in store. All in all, though, nothing has been unmanageable.

Here's the thing: we adjust. Humans are remarkably resilient creatures, and we push through, we adjust, and we find new ways of being. Just being diagnosed changes everything, and little changes happen over time. . . I'm a different person than I was six months ago (mostly for good); some of that has to do with chemo, but some of it doesn't. I strongly recommend continuing with mindfulness practices, regardless of your ultimate decision.

I think of it like this: I wouldn't have picked this crap off of a menu, but it's edible.

I know you are all at different stages but for those who have completed chemo how are you feeling now, months and even years out?

Six weeks out, I feel much better than I thought I would, and that's including a surgery I threw in there last week. Again: humans, resilience, etc. You're young and haven't mentioned any comorbidities that could be problematic. Strong going in = strong coming out!

More hugs. You'll feel better if/when you get this ball rolling, I swear. The leading-up-to-things is usually worse than the things themselves, if you know what I mean.

fightergirl711 -- I wasn't really offered a choice of chemos, but my MO has a preference for AC + TH because she finds that her patients tolerate it better than TCHP, which can cause gastrointestinal distress. She would rather have her patients finish their regimen than quit or end up in the hospital. However, I should note that -- based on my unscientific analysis of MO's waiting and chemo rooms -- many of MO's patients are considerably older and more fragile than me (diagnosed at 46 with high blood pressure as my only other health concern).

In any case, lots of Triple Positive ladies have done TCHP and have had great outcomes; I personally don't know what the data says about the comparative effectiveness of the two regimens. (Maybe someone else here can provide that???)

As for the cardiac impacts of AC and H, MO closely monitored my heart. I had heart scans every three months, and the MUGAs showed that these treatments had no impact on my heart's functioning. As for how I feel a year out from chemo, I feel fine. Right now, I have a cold, but otherwise my body has pretty much recovered from that ordeal (and rads and I'm on Aromasin). Best wishes!

so I had 1.5 mm of invasive cancer, and 4cm of dcis. I did taxol and herceptin. "Chemo light". There are some on these boards who are doing herceptin only,maybe they will chime in here.

Chemo in all honesty was not that bad. And I had two allergic reactions and had to switch to abraxane. Not fun, but doable. I did it because there is evidence emerging out of Dana Farber that this is the best course of action. At 40 with two small kids...i threw the book at it. But I also threw the book at it because i knew myself well enough to know that I would have beat myself senseless emotionally if I didn't do it and the cancer came back. I would never have forgiven myself. Is that rationale? No...but I am 100% confident that's how I would have felt.

I am now almost 3 months out since my last Chemo. 2 months out from RADS. I'm starting to feel like my old self...energy is returning, stamina is improving, I hit the gym this week...so it does get better. Herceptin only now, which is a breeze. I'm also doing ovarian supression and tamoxifen. Few hot flashes here and there.

Sex is an issue, but lubrication fixes that. But you will have that whether you do Chemo or not since u need hormone blockers.

You will be fine. One step at a time.