TRIPLE POSITIVE GROUP

I shaved my head a few weeks ago and have been excited to have some growth coming back lately. I mentioned it to the oncologist today and he burst my excitement bubble by telling me to not be surprised if it falls back out/regrows again until chemo is done.

congrats on having the opportunity! I can't get any appointment (all booked). Thankfully I was able to get my mom one in her county

I got my first shot of the vaccine last Monday. Very lucky as my employer got approval since we employ home health caregivers which puts all of us in the office at risk. My arm was a little sore for a day and I felt even more tired than usual but that was it. Hope you all get yours soon.

redcanoe - dose reductions are pretty common, try not to stress. Taxotere is a fairly intense drug, so there is the possibility you can be switched to Taxol if your liver values continue to be impacted. Something to consider is that the first infusion contains loading doses, which are larger than the subsequent ones. Your liver values may stabilize and not continue to drop further since the dose will be smaller and also reduced by a percentage. It is also not uncommon to have fluctuation in liver values - chemotherapeutic drugs are either filtered by the kidneys or the liver, depending on the drug. This is why function of these organs is checked throughout chemo, and most oncologists expect to see these changes. The approach if there is concern about too big a change is to do exactly what your MO did though - reduce the dose and see how you do. Hang in there.

My MO dropped my Carboplatin by 10% for TCHP #5 but, I went back to full dose to finish the treatment.

I finished my 6 doses of TCHP and I'm getting my first dose of just HP today. Does anyone still recommend icing your hands/feet because of the neuropathy that Perjeta has caused for some? I'm assuming not since I can't find anything about it. Also, has anyone's MO continued to prescribe Neulasta for the Herceptin?

LaughingGull - that’s been my experience. No additional IV or oral meds at all. Yippee

Hi Jumpship,

I had my ovaries removed and I feel it was the right decision for me. Many things to consider for the ovary removal. Fear alone, not enough of a reason.

Did you discuss your ovarian cancer risk with your oncologist, or, better yet, with a gynecologist-oncologist?

My dad died when he was 46 (not cancer), and I recall going through death fears every time anyone in my close family (including myself) reached that age -good thing we all left that milestone behind 😀 so I think I understand -but you really need to look into your risk and pros and cons.

LaughingGull

i haven't had my period since January 2020. I asked my MO to check my Estrogen but, he wants to wait until I'm done with Kadcyla (April).

However, I'm trying to get into this vaccine trial and they wanted to know (very paranoid about pregnancy). So they tested me and I am in full menopause. I have no idea if this will change after Kadcyla ends but, it does give me options...going to AI without Lupron. Possibly more time to make any surgical decisions.

Hi. If there is anyone out there that had a unilateral mastectomy for DCIS/IDC stage 2 triple positive with chemo and HP, did your surgeon or oncologist wait 6 months or a year to check the other breast with a mammogram? Thanks

I am sure there is a thread somewhere on this but would like to ask all of the triple positives if any opted to not take anti hormone drugs. At my age (soon to be 61) I am interested in quality of life. I have a history of psoriatic arthritis, depression and anxiety yoyo weight losses and gains. Menopause sucked for years. My psoriatic arthritis is managed with my naturopathic dr and the last 2 years intermittent fasting and keto have helped me maintain my weight loss. I dont want my next 5 to 10 years make me feel like I am 80 years old. Advice from all would be welcomed! 🤗

Iamloved, I’ve been on Anastrazole for several years, at first I noticed leg pain and hot flashes,but it resolved itself and I’m glad I stuck it out. Just had my three year mammogram: all is well.

Hi toque,

Kadcyla after neoadjuvant treatment is recommended in the case there is invasive cancer left. DCIS is not invasive. From the paper that presented the results of the Katharine trial:

"Patients were eligible for participation in the trial if they had histologically confirmed, HER2-positive, nonmetastatic, invasive primary breast cancer (clinical tumor stage T1 to T4, nodal stage N0 to N3, and metastasis stage M0 excluding clinical stage T1aN0 or T1bN0) at presentation and if residual invasive disease was detected pathologically in the surgical specimen of the breast or axillary lymph nodes after completion of taxane-based neoadjuvant chemotherapy administered with trastuzumab."

The change of practice that introduced Kadcyla was based on this paper, which didn't look at DCIS cases.

Nerlynx: what do you mean by surprises? If you have a PCR, your prognosis would be the same as if you had never had cancer in the first place. Nerlynx wouldn't be recommended. Even if you have residual cancer, the data for Nerlynx is iffy.

I think you are right to think about all of these options and treatments; but also accept that, when there is no evidence of benefit, more treatment should not be given, and you would need to trust that the treatment you got did the job. And even without residual cancer and with an excellent prognosis, there is no 100% guarantee of your cancer not returning. One needs to live with that.

LaughingGull

@LaughingGull: By 'no surprises' I meant that if I stay at Stage 1a after my surgery pathology comes back, would Nerlynx be overkill risk vs. benefit-wise or if I do get an unpleasant surprise of going up in stage # after surgery, maybe then Nerlynx would be something to consider.

Thanks to you and morrigan_2575 for your input.

toque - there are other risk factors that figure in to decisions on whether or not to add additional drugs post surgically. Age, type of surgery, radiation, how you tolerated Herceptin, i.e. side effects like diarrhea, which can become more marked with these additional drugs. Are all your masses IDC and triple positive? Being multi-focal is a risk factor that should be considered, but if some is IDC and some is pure DCIS, the presence of DCIS would not enter into systemic treatment decisions, IMO. What type of surgery are you planning, and are you having radiation? As always, it is the balance of cost/benefit - do you receive enough benefit contrasted against any potential harm. More is not always better, but I understand the feeling of wanting every available tool at your disposal. To answer your questions, 1) I have not personally seen many stage 1 people receive Perjeta, in fact I have not seen all that many receive AC-TH, many receive 12 Taxol with Herceptin for a stage 1 TP diagnosis under the old staging criteria. 2) I don't think Perjeta would be added if there is not a solid reason - this is a cost issue for the most part, but certainly introducing potentially deleterious side effects or risk for no discernible reward should be considered. 3) I believe that if you have DCIS remaining it would not influence adding additional targeted therapy after surgery. This type of systemic treatment is for IDC, anti-hormonal therapy,surgery, and/or rads, are the tools for DCIS. 4) Nerlynx - again, cost/benefit. Paying out of pocket for something that is not strongly indicated is a lot, but I do understand the inclination. 5) I was actually in the Phase II GP2 trial, and it has been slow to proceed to the market due to some complicated factors, although the vaccine performed very well. The placebo was not saline, but rather GM-CSF, similar to Neulasta, it is interesting that the Baylor/Greenwich Life Science trial is using a true placebo of saline. You would know immediately if you were in the placebo arm, you would be absent of the typical vaccine arm side effects, I was in the vaccine arm - this was disclosed to me at the 5 year point, and I had definite side effects, much like after a flu shot and a marked injection site reaction on the thigh. I traveled from Florida to Washington, D.C. for the trial, but I will say that it was a lot. A visit for the consent and physical exam to determine if I was a candidate. Six multi-day visits over six months spaced apart for labs, and the vaccine administration and follow up. Then boosters twice a year, with another trip a month after each for labs. So, a minimum of 18 trips? I was guaranteed of receiving a placebo of the GM-CSF, which is an immune booster in and of itself, and this factored into my decision, and I had lived in D.C. for many years and had places to stay with friends and family for free. I searched for low cost direct flights, and utilized points and free flights when I could. Additionally you have to be tissue typed to participate in this trial, like for an organ transplant. The GP2 vaccine apparently is only appropriate for those who are HLA2 positive, which is 50% of the population, so you have a 50/50 shot at being a candidate for this trial. In the Phase II trial GP2 was partnered with another vaccine for those who were HLA2 negative, the AE37 vaccine. It might be worth trying to have tissue typing done first to even see if you are a candidate so you don't waste your time. From what I have read the ball was to get rolling in early 2021 for this trial in 16 locations, but I don't know if the pandemic will slow that down and whether they will allow patients to travel to the sites because of risk. It also looks like they are still raising funding to facilitate the trial, so I don't know where it currently stands.

Edited to add - when taking a closer look at the poster presented at the SABCS, it looks like it indicates this trial is for node positives? Don't know if being node negative is an exclusion since the trial isn't registered yet with the exclusionary info. This would also indicate the need for documentation pre-chemo of the positive node(s) I would think.