TRIPLE POSITIVE GROUP

Thank you again ElaineTherese. You give me hope.

When I asked about why we are doing radiation after chemo if chemo is systemic and takes care of breasts as well.. I was told the chemo doesn't entirely get rid of everything in the breast area. So they perform radiation. So my right breast will not have radiation if chemo isn't going to be effective, how would we make sure nothing happens here?

Are treatments longer for TP if surgery was not started first as intent was to reduce tumor size? Earlier when we were waiting for FISH results MO said treatments are different if Her2 is positive with chemo going for 4.5 months instead of 4 for Her2 negative. I am not sure if that will change tomorrow.

I will update after my call with MO tomorrow.

Thank you again for all your inputs. This is really helpful and is helping me understand more about my cancer.

hopeful - welcome, but sorry you have to be here, and dealing with treatment during a pandemic. I am one who had surgery first, mainly due to the timeframe in which I was treated. Perjeta had not yet been FDA approved for early stage (that was done in late 2013), and the majority of TP patients had surgery first at that time. So, I have no yardstick to indicate the effectiveness of the treatment other than I have not recurred - I just passed the 10 year mark. As far as radiation, because you had lumpectomy it is standard of care because there is no way to insure no cells were left behind as the tumor was removed from the breast and pulled past other healthy breast tissue. Radiation of the breast and axilla is as much an insurance policy as systemic treatment in that situation. Mastectomy sometimes eliminates the need for radiation, but close margins at the skin or chest wall, or positive nodes absent axillary clearance, can require radiation too. Chemotherapy, targeted therapy, and anti-hormonal therapy can provide protection to your other breast, but no treatment provides a guarantee. You will have close surveillance of both sides going forward. The decision on what type of surgery to have, if given a choice, is tied to your tolerance for risk. I chose bi-lateral mastectomy because I image poorly, mammography missed my palpable tumor and areas of DCIS, and MRI missed large positive nodes, so I reduced my risk as much as I could with a more aggressive surgery. It turned out I had ADH and ALH in the prophylactic breast, so a ticking time bomb. One of the things that contributed to my decision was that I always had multiple cysts in each breast making self exam useless, and a 20 year history of issues. I totally understand the reasons many opt for lumpectomy though - it is such an individual decision. The length of time for chemo varies due to the different regimens used, even if you are Her2+. Taxol with Herceptin is a twelve week regimen, dose dense AC-TH(P) is a 4 month regimen, but TCH(P) is slightly longer because it is a 21 day interval with six infusions. With all of these the Herceptin, and Perjeta if you are receiving it, would continue for the balance of a year - so if you start in November, you would finish those targeted therapies Oct 2021. Keep asking questions - this is a great group of folks and we are here for you.

It is nice you have wig shops locally! I had to order online (but ended up with really inexpensive ones from Paula Young and they fooled even people who know me well -- even the chemo nurses were shocked when I just pulled it off in the chemo suite 'cause they thought it was my own hair!)

I kind of love my port. I was sore for longer than most people, but oh it makes things easier! And I did the TCHP, then after surgery I had residual disease so now am on Kadcyla, and that makes me especially thankful for the port.

Do get seatbelt cushion. I got mine off Amazon. It helps (my port is right where the seatbelt comes across my chest, and I don't have a lot of padding of my own there. Other than the seatbelt, I never think about my port except to be grateful at infusion time or whenever I have blood drawn.

@hopeful - i did TCHP it wasn't awful but, it did build up. Get ice mittens/socks for your infusion day, wear them during the chemo treatment to help prevent neuropathy. Also chew on some ice chips during taxotere to prevent mouth sores.

My biggest issues were dry mouth (awful), nose bleeds, taste, lack of appetite and fatigue (starting with cycle 4).

Hi!

In most cases where heart damage occurs due to targeted therapies like Herceptin, the patient suffers from low ejection fraction. Symptoms of this condition include:

• Shortness of breath or inability to exercise.
• Swelling of the feet and lower legs.
• Fatigue and weakness.

In such cases, the patient will take a Herceptin and/or Perjeta break, and wait to see if the condition resolves itself. If the patient recovers, there may be another attempt to resume targeted therapy. If not, the patient might just quit. My neighbor made it through four cycles of TCHP before she suffered from heart damage and had to stop. Interestingly, the four cycles were enough to clear out her cancer.

I was 46 when I was diagnosed, and also suffered from high blood pressure (which is now controlled by Amlodipine, Hydrochlorothiazide and Lisinopril.) I had no problems with Herceptin or Perjeta.

I am doing ovulation suppression (Zoladex) so I can take an aromatase inhibitor (Aromasin) instead of Tamoxifen. (I'm still pre-menopausal.) But, Tamoxifen works well, too.

Just some random comments from my experience. I was told early on that yes, TP is a more aggressive type of tumor but the outcomes are better, specifically because of Herceptin. And the SEs for Herceptin are nothing like chemo but my words of warning are that, at least for me, they weren't zero. I had really upped my protein intake through chemo, which really helped *a lot*. In fact, my MO told me I was the only chemo patient she'd see who was actually making blood through treatment. I cut back after chemo and after a while began noticing that on Herceptin days, I felt a little woozy on the drive home, almost as if I'd been drinking. From then on I made a point to eat red meat the two nights before a Herceptin infusion and it made a huge difference. I also did the whole year without a port. My MO wanted me to try IVs and that would have been my preference anyway. Her thought was it's just one more surgery, one more scar, and only to get one if the IVs didn't work out.

Hang in there. I can also tell you that, as I'd read in many places on this site, your hair will be pretty much back to normal about two years after you finish. Mine's looking pretty damn good!!

Hopeful2020 -

I'll jump in say that I'm in the middle of treatment - I was diagnosed with TPBC in March 2020, started chemo in April. Did 6 rounds of TCHP. I had some pretty intense diarrhea with it, and it was due to the taxotere. They reduced my dose for the last two rounds and that helped immensely. I had surgery in August - I opted for a double mastectomy, no reconstruction. I wanted as much breast tissue gone as possible. I had an over 99% response to the chemo, so I have stayed on Herceptin/Perjeta (rather than being switched to Kadcyla) after surgery. I have no side effects from just the H/P so it's been pretty easy. I will continue through the spring. I did not do radiation, after much research, because I had a mastectomy and because of my response to chemo. My MO agreed with my decision, so now I'm just finishing my infusion treatments and deciding about whether or not to go on an AI. Chemo is no joke - and it's hard. But it was SO worth it. I don't regret that decision at all, and I'm also very happy with my surgical decision. Happy to answer any questions you may have - we're all here to support each other.

Kris

Thank you so much to each and everyone who replied. You are all so nice and are giving me great support. Good to know most people haven't seen huge issues of cardiotoxicity with Herceptin.

My port is going to go in on Tuesday. They are waiting for insurance to respond and then will start. So likely week of 30th I will start the chemo cleanse!

How were your experiences having the port for 1 year? Is it difficult to maintain? How does it not hurt? Does it come in the way of doing things? I was told I would be given the twilight sedative.. and would need about 4 hours for this!

Hello everyone, I was just diagnosed yesterday with triple positive IDC. I am 34 years old and I have four kids between the ages of 3 and 11. I found a lump while doing a breast self exam in September. On ultrasound, it was measured 1.7 x1.6x 0.9 cms so maybe less than 2 cms, maybe more. Some of my biopsy came back as DCIS, will that affect the final size measurement? Does only the invasive part count?

I live in the far Northern Canadian territories so sometime in the next two weeks I will be flown out for an MRI, genetic testing and surgery. I have only met with a general surgeon here in my home town who isn't too familiar with breast cancer but now she is no longer my doctor and I will be under the care of a team of doctors at the cross cancer institute in Alberta. I am meeting with an oncoplastic surgeon by Zoom on Monday. It sounds like they believe I am a good candidate for breast conservation surgery and radiation. The general surgeon I met with yesterday said that I will be taking tamoxifen and herceptin but maybe not chemo. This doesn't sound right to me. I think maybe the team in Edmonton said no neoadjuvant chemo? They are definitely talking about surgery very soon. That sounds like maybe a normal practice for tumours less than 2 cms and no apparant lymph involvement. Does that sound right?

What questions should I ask? My mom is already pushing for me to demand a bilateral mastectomy. I'm not against it but at the same time, I'm not going to have one just because my mom says so. I want to make an informed decision based on studies and not emotions. Can you share any resources I can read about to prepare myself for this meeting on Monday and inform my decision making.

Agree with YesIamaDragon - I am very new here myself. Lump seems to be a lump regardless of whether DCIS is there, if IDC is present. My surgical pathology report said 70% DCIS but it had a whole bunch of other things like lobular, IDC, ADH, ADL.

I just had a lumpectomy and decision was based on age, tumor size, BRCA status and personal preference. I just didn't want to deal with the recovery process of mastectomy at this moment when I still have to go through the chemo and radiation. Maybe once all treatments are done, may consider an oncoplastic reduction later when I have more time to deal with this. You will need to make the decision that is best for you. You could avoid chemo if not Her2+. I say this because before surgery I was all set for a plan for no chemo because was Her2- and my MO told me that chemo would come into picture if Her2+, oncotype score is high, tumor is big and more than 3 lymph nodes were involved. But after surgery, my tumor was Her2+ and that changed everything with chemo now being the next step.

The most important thing for me is to find a good hospital with doctors who are all on the same page.

Thank you so much for the replies! This is all new to me, I have lots to consider

Happy Saturday? Hi Everyone -- I have a question about Perjeta. I'm on day 6 of my first cycle of TCHP and I've had nonstop uncontrolled diarrhea for several days. Nothing has helped -- tried OTC remedies like Immodium, binding foods, natural remedies -- and everything I eat seems to go right through me. I've read that Perjeta can be the main culprit for this on the HER2+ protocol, so my question is this: have any of you had this issue and have you spoken to your doctor about eliminating Perjeta for a cycle of two to see if helps? The nausea has also been terrible but at the moment, the diarrhea is far worse. It's to the point where I can't leave my house for fear I'll have an accident. Thanks for your insights.

Unfortunately there are several culprits for the Big D in the TCHP cocktail. I did not have Perjeta but had issues with just the TCH - I spent the first 10 days after infusion pretty close to home, and definitely didn't wear white jeans... it could really be any of the chemotherapeutic agents or targeted therapies. Be careful about dehydrating, it might be worth going into the infusion center for a bag of fluids if you are still having issues, and definitely let your MO know about this now, don't wait until your next infusion. It may be that you need prescription strength anti-D meds also. That said, you may see this calm down after the first infusion because you received loading doses of everything - the subsequent doses you will get won't be loading, so side effects may be less marked. I relied on BRAT diet foods, but didn't need any dose reductions. Good luck!

RedCanoe -- Yes, lumps and bumps and tenderness will wax and wane with the menstrual cycle, and you have have had significant deep bruising from the biopsy as well, which can pull fluid into it as the blood cells degrade so actually swell more. But you will know more very, very soon!

Try to not let your mind spin too much until then (believe me, we ALL know how hard that is!) It sounds like you are in good hands at the referral center.

hi there just found out today I’m a triple positive with mucinous pure carcinoma. Apparently rare any others out there? Was scheduled for mastectomy now about to tackle 7 rounds of chemo first.