TRIPLE POSITIVE GROUP

oh wow, I didn't know they finally approved the Herceptin shot. I asked about it when I first started last January and I don't think it was available in the US.

@Boxingmama - It is scary but, there are a ton of treatments available to us. We have Herceptin, Perjeta, Kadcyla, Nerlynx, Tamoxifen, AIs there's also several vaccine studies for HER2+ (that include Triple+).

PJAL....I’ve lurked here but haven’t formally introduced myself. I was diagnosed er/pr + her2- fish 2/20/20. Did AC-T because we found it in a node during my initial appt with the breast surgeon. I also have the PALB2 genetic mutation...for awhile it was one fun surprise after another. I had a bilateral mastectomy and skin sparing/nipple sparing direct to implant reconstruction. I knew rads was next when I got the news my pathology from surgery was Er/pr+ her2 + fish. Needless to say we were all surprised and I was devastated. They said a change is rare but can happen.

I had a good response from chemo but not pcr. The decision was I would do Herceptin/Perjeta for a year. I started in October with the subcutaneous injection. The drug I’m getting is phesgo. It’s injected in my thigh over 6 minutes and then I wait for 15 to make sure there is no reaction...in and out. They said the most common side effect is diarrhea (which is usually the Perjeta) and maybe a skin rash. I’ve had no issues. It’s quick and easy and I don’t have any side effects I notice. They still do the echo every 3 months because of the Herceptin. I’m so happy I have that option. I can totally understand where changing is scary but I’m happy with the injection.

Let me know if you have any questions

I was ER/PR+ Her2- at the start with the biopsy. But my lumpectomy surgery pathology came back Triple positive. It seemed like the first staining was light as seen in the positive control so. Her2 was possibly not picked up. But since surgery pathology came up equivocal FISH testing was done that clearly indicated the number of copies of Her2 amplified. But being Her2+ opens up a lot of treatment options I was told.

I just finished my last round (6) of TCHP yesterday and now waiting for radiation next of the local node and breast and continue on Herceptin till October.

hnsquared - Thank you for information about the injection. I did have the infusion instead of the injection and will continue with the infusions until the end of treatment. The nurse thoroughly explained the injection and the drug. They are now using this too, but it wasn't available when I started and they will not change since I'm almost done. I think the person clearing me for my appointment was excited about it, with good reason. After the nurse explained it, I had a chance to read the studies and I wish it was available when I first started. I was also diagnosed in 2/2020, had surgery and began treatment in the beginning of May. Thank you again for explaining.

Nice to see everyone who helped me so much and to be celebrating exactly 1 year since finishing Herceptin, yey! I had it via infusion at first with Taxol for my treatment at home in the US, then back to the UK (for work) & had the rest of the year regimen with the shots. They are definitely interchangeable methods though the formulations are obviously different. Shots are much quicker though they hurt enough, that every other shot now - flu etc - seems like nothing. Then again 2-3 mins of burning is a plus vs time in that infusion chair so I wasn't complaining. So overall I recommend the shots!

I'm now back on Tamoxifen after a brief period switched to Letrozole but I had such a bad time with it with no improvement to the cramping & constant pain, my MO agreed we should go back to tamoxifen. I was a bit concerned because of the slightly better performance of Letrozole but my MO said it was de minimus given my stage and not as applicable given I was pre-menopausal when diagnosed, and only post now, so the studies generally don't cover that life change anyway.

Since being on Tamoxifen, I've had a first time reading of a pre-diabetes / elevated blood sugar and it's never happened before, tho there is some family history of diabetes. So I'm really interested in the Metformin - what dosage are those of you getting it on? How has it been? I am seeing my MO at the end of this week and trying to gather info to ask about it as it seems for many reasons it might be worthwhile for me.

One last is that the hot flashes Tamoxifen seems to give me or worsen don’t seem to ever go away - my MO is having me try gabapentin for it but so far not much impact. But I’ll take them over the constant cramps and hand issues I had on Letrozole, so pick your poison seems apt for this one

boogirl - my MO gives his breast cancer patients who have expressed interest a 500mg dose of Metformin. I believe that would be a low dose for controlling diabetic blood sugar levels. It is hard on the stomach and can cause the Big D, so is best to start well after any chemo or targeted therapies. I too had some elevated blood sugar - I blame five years of Lipitor taken for high-ish cholesterol. I was taking that for several years preceding and also during chemo and into letrozole. Because it can cause joint/muscle pain I spoke to my primary care about stopping it because I had joint and muscle pain and didn’t feel like I could stop the letrozole. My total cholesterol is high, but the number is driven by my good cholesterol. My triglycerides are fine, so I tapered off successfully with no real increase in total cholesterol numbers, but was left with the blood sugar issue. I did change my diet somewhat and that seems to have normalized now but it took a while. I still hover just inside the normal range, but my A1C is also ok. Here is a link to some info about Metformin and breast cancer.

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC6637843/

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4811404/

https://breast-cancer-research.biomedcentral.com/track/pdf/10.1186/s13058-015-0574-3.pdf

cdw - I was never on Tamoxifen, but have read that some of the side effects people experience can lessen or dissipate after some time passes.Hoping this is temporary for you!

Anna,

If you want to know whether OS is working, you can ask your MO to test your blood for estrogen levels when your other blood work is done. I started Zoladex six years ago and have never had any breakthrough bleeding. Then again, my period stopped about four months into chemo and never came back. However, I was 47 at the time, so my period had been getting lighter before I began treatment.

Not everyone has the same side effects from OS. I did get hot flashes, but I started Aromasin at the same time as Zoladex, so that might have been the culprit. ((Hugs)) It's easy to worry and to wonder if you're doing enough to keep a recurrence at bay.

Thanks Taco! I am getting ready for radiation. I posted in the April radiation group and will post here too - it's been 5 months since surgery and with Chemo done, what exactly is radiation going to do? How long was yours? What kind of info do they look for in the scan?

Since the lump is gone now and mammogram showed all clear, I wonder if it would just be a whole breast radiation with lymph nodes? Any info will be helpful. Thanks!

Hello all,

I am new here too, still have to work my profile out. I was first diagnosed in 2003 at 42 with Triple+, left mastectomy, 2.5cm tumour, and 1/19 nodes. Stage 2. I had 8 treatments, AC/DC and taxol, plus 5 yrs Arimadex. This is before Herceptin days. Cancer free for nearly 18 years

I am now newly diagnosed with a new Triple+, small tumour Stage 1A, <1cm, just above my mastectomy scar. Had a lumpectomy, and a prophylactic right mastectomy. Petscan all clear. Waiting on appointments now to see MO. I believe radiotherapy will be my first port of call. My big concern is doing Herceptin, and reading the risks, I wonder if it really is worth it, if I have chemotherapy anyway. I live in the country, too far to get to the hospital, or have an ambulance come if something goes wrong

nobananas - redcanoe asked the question that occurred to me, do you have any existing co-morbidities that you are concerned about with Herceptin? The vast majority do just fine, and have more reactions to the chemo rather than the Herceptin. I have never heard of anyone on this site over the ten years I ahve been here needing to be taken in an ambulance due to an issue with Herceptin. The drug has been around and in use with FDA approval since the late '90's, so it has a long enough track record to provide adequate assessment of acute reactions.

morrigan - I was pondering the same question - if it is a recurrence for nobananas I would think it is a hormonally driven recurrence that happens to be Her2+. The Her2+ driven recurrences tend to happen rather quickly - usually within 2-3 years. Alternatively, a new primary, even in the same location is a possibility, and I am curious what the MO will say.

nobananas - waiting with you on next steps - hoping your MO appt provides information and reassurance on the way to proceed that will provide you the most benefit with least risk.

Welcome JustStorm! Sorry you had to join the club.

"35 when diagnosed. On my daughters birthday. First chemo on my bf's birthday. Surgery on my brother's bd. And next are cording exercises on my sister's birthday. We joke about my timeing."

At least this way, you'll never forget the dates and I've been asked a lot from everyone doctor I see as part of the medical history

JustStorm - if it's any consolation to you, I had my bilateral mastectomy on my husband's birthday! Happy birthday honey! At least I got immediate reconstruction, I guess.

Thank you ladies for your response. I have no co-morbidities, and am in pretty good health. I’m on no medication either. My SIL had Herceptin at a younger age than I am now, and went into heart failure. I’m too far from a hospital if this happens. This is classed as a new cancer, and unusual as it is, appeared as a small pinhead on my mastectomy. It caught my eye in the mirror. I felt it did grow over the next couple of days, well, biopsy said 6mm. By then, it was an obvious lump, and could be seen clearly sticking out on top of my flat chest. So having a prophylactic mastectomy just now, will help me identify any other lumps that may arise in the future, very easy to identify on a completely flat chest. NO REGRETS! And no more mammograms.

Heart failure happens about 4% of the time with herceptin. So it's unlikely you would also have that side effect. Even if you did, heart failure isn't a call a 911 medical emergency. A lot of studies are showing the heart effects are reversible most of the time. I personally felt that the risks of herceptin far outweigh the risk of distant metastasis.