TRIPLE POSITIVE GROUP
Comments
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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?
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No Neulasta with the Herceptin/Perjeta combo
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LaughingGull - that’s been my experience. No additional IV or oral meds at all. Yippee
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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
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jumpship - I had a total abdominal hyst/ooph nine years before I was diagnosed with breast cancer - I had uterine fibroids too numerous to count that were causing havoc and endless bleeding. When I had the surgical consult the gyn surgeon recommended removing my ovaries since I was 45 and had many ovarian cysts over the years as well. Everyone was surprised at the surgical pathology when they found a 3cm pre-malignant tumor in the right ovary, never seen on the TVUS done within 6 months prior to the surgery. So... the surgery was definitely the right call for me and now knowing how strongly estrogen fed my breast cancer I would think I might have been diagnosed at a younger age had I left the ovaries in place. Of course, it didn't prevent my BC, but I was glad to be able to go straight to an aromatase inhibitor as that is what my MO prefers for his triple positive patients.
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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.
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Nsbrown54 - in my experience Herceptin did not come with any cumulative side effects. I felt 100% normal after about half of my infusions and the other half just left me a little tired for the day of the infusion. Totally fine the next day. For one infusion I didn't eat anything prior and that day I felt a little blah but nothing compared to chemo. I just had my last infusion this week. Port gets removed Monday. Keep going - you'll get through this!
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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
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dlr68 - I see my breast doctor Wednesday for the first time since my mastectomy. I expect that she’ll get me scheduled for a mammogram and/or ultrasound of my remaining breast. My last round of testing was in June when I was being diagnosed, so it’s well past time. I was previously having yearly mammogram and breast MRI done 6 months apart.
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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! 🤗
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Iamloved,
There are a zillion threads about whether or not to take hormonal therapy. I'm on Year 6 of exemestane (generic Aromasin). I don't feel like I'm 80. It initially gave me hot flashes and moodiness, but the moodiness resolved with Celexa, and the hot flashes resolved with time. It gave me osteoporosis, but I've graduated to osteopenia with Prolia. It is what it is. It's the one thing I can do to prevent recurrence, so I'm doing it. Good luck!
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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.
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Hi, I haven't filled out my profile yet but I would like to ask about Perjeta, Kadcyla and Nerlynx. I live in Canada and just assumed I would get whatever the 'best' treatment available is so I didn't feel like googling anything at the beginning of my diagnosis. I'm 37 years old with IDC triple positive (and DCIS is present) with the largest measurement being 1.9cm on MRI. I have two other areas measuring up to 1cm and 0.7cm each. My biopsy report listed lymphatic invasion present and two ultrasounds and an MRI showed no lymph node involvement. I was given 1a as my clinical staging. I am now done my neoadjuvant chemo (AC then paclitaxel) and I am continuing with Herceptin until my surgery coming up in March. Based on my pathology report, I will stay with Herceptin or be switched to Kadcyla.
My questions are:
1. I've been reading lots on this board and I get nervous when I see other Stage 1 triple positives that have received Perjeta. The newer targeted therapies for early stages are approved by Health Canada but are not covered. I keep wondering if I was only 1mm off from benefiting from Perjeta? My oncologist didn't mention it in my treatment plan. I see indications listed as >2cm or node positive but still see that members on this site have gotten Perjeta even if they don't meet the indications?
2. Now that my neoadjuvant chemo is done, if I happen to have a pCR and stay with Herceptin, would asking to have Perjeta added post-surgery be an option? I didn't see any studies/literature on this.
3. To be switched to Kadcyla if I don't have a pathologic complete response, I see the criteria from KATHERINE worded it as 'residual invasive cancer remaining'. Does this mean that if I still have DCIS show up after surgery but no IDC, I stay on Herceptin? Or is it if there is even one cancer cell (even DCIS) detected, I will be switched to Kadcyla?
4. I'm willing to pay for Nerlynx if my oncologist ends up agreeing to it. I feel like if I don't do everything now and have a recurrence, I'll always be thinking 'what if"? Is it overkill for Stage 1a (assuming no surprises after surgery)?
5. Lastly, I've been reading about the HER2 vaccines. I saw the GP2 one looks promising and a Phase III trial is coming up. I wish it didn't have a placebo arm! I would travel anywhere to get it but that would be disappointing to get saline. Has anyone heard when this trial might take off?
Thanks in advance!
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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
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3: Kadcyla - I'm in a couple of Facebook groups and this seems to vary by MO. I saw one person where all the IDC was gone and only had DCIS left and her MO kept her on Herceptin. Another person in the same situation was moved to Kadcyla
4: - it's expensive but, I've seen people in my Nerlynx Facebook Group that have been denied by Insurance and gotten help from the manufacturer.
5: Vaccine Trials. - it does look promising but, it will b awhile before it's available assuming it makes it that far. They just wrapped up and presented Phase 2 results in August. They have a poster for Phase 3 but, no dates have been given and last I looked it wasn't listed as recruiting.
I just got into a Vaccine Trial, I was randomized into the DC-1 arm. It means I have to put Nerlynx on hold for a year but, I think it's worth it.
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@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.
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toque: FYI, for my wife's case, the MO was never supportive for taking Nerlynx although we mentioned to her a few times. My wife never got switched to Kadcyla (it was not baselined by then), either and she continued the HPs for the reminder of the year after surgery.
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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.
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"More is not always better, but I understand the feeling of wanting every available tool at your disposal."
I struggle with this, wanting to do/take everything. Nerlynx is a good example my MO doesn't really think it's necessary given the Kadcyla. I have a different opinion 😁
We agreed to revisit the discussion in a year since I can't start Nerlynx until after I complete the Vaccine Trial
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morrigan, the evidence for Nerlynx, if a bit questionable, was gathered under the premise that the patients started it less than one year after finishing Herceptin; if you start later than one year, then you enter the zero evidence zone. I also looked into that vaccine trial and decided not to pursue it and take Nerlynx instead -but I couldnt get Kadcyla, which is what I was really after. I probably wouldnt have looked into Nerlynx if I had been given Kadcyla '-it was approved too late for me.
I am not suggesting that you should have pursued Nerlynx over the vaccine trial, I think in your case the vaccine trial is more interesting. What I am saying is that I doubt your MO will prescribe Nerlynx after the vaccine trial or that insurance will approve it.
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@LaughingGull - I think it depends on where/when it ends compared to my last Kadcyla. Right now it's a very tight timeline I think about 11 months since there's a month overlap. I realize I may have just tossed Nerlynx out the window but, we'll see what happens.
My MO is also looking at how many cycles of Kadcyla is correct. Everything I know says 14 but, on my Facebook group people are getting 17-18 cycles of Kadcyla (for residual disease). People that are on the longer cycles swear their MOs said 17 is the new protocol. I just had #12 today, so I asked him to check if we need to add 3 more cycles.
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Hello everyone
I just got done Round 5/6 of TCHP yesterday. I also had my first ECHO post chemo.
I have been having fluctuations of blood pressure last round and the heart rate has been high. I was on blood pressure meds for a few years before cancer diagnosis, which my PCP from another practise took me off after my blood pressure dropped after I started chemo on round 3. Then brought me back on half dose towards end of round 3 but that lowered my blood pressure as I was having big time dehydration. So I was asked to check blood pressure and then take the meds. Long story short, MO recommended meeting a cardiologist who treats onc patients. That's in 2 weeks. In the meanwhile, ECHO shows trivial pericardial effusion. MO says that's a benign finding and no need to urgently see the cardiologist. I haven't seen the report yet but was told EF was still good so heart is pumping fine. Baseline was 64%. I don't have breathing difficulties unless I exert due to exercise. Hemoglobin is low and lowered RBC count combined with fatigue is what I am assuming this to be. Kidney, liver and WBC is all good.
Anyone who had similar findings and how did it turn out? I am wondering if this is due to Herceptin which will continue till October.
Any input will help! Thanks!
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re: nerlynx
My MO did not recommend I take nerlynx. I brought it up a few times and when I was ending HP we discussed the data in depth. We ultimately decided not to go with nerlynx. I was (and still am sometimes) conflicted because I’d like to throw anything I can at this, but know that’s not always the answer.
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re: Nerlynx, I took it with very mild side effects and even I wouldn't pay for it out of pocket if my insurance hadn't paid. The data for it just isn't that great. Hell, I had a hard time justifying making my insurance pay for the Nerlynx, and almost quit early because of that. If you can get Puma to give it to you, go for it (unless you have a PCR in which case additional treatment will do more harm than good). But paying for it yourself is crazy.
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Thanks for the replies to my questions. I’m sure I’ll be asking more questions in March after my surgery/pathology report
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Hello, I have the unfortunate pleasure of joining the triple positive club. Felt a lump and got it checked, thinking I was going to feel embarrassed for being overly paranoid and that would be the end of it. Sadly one test led to another and here I am, triple positive breast cancer at 31. The fortunate thing is that I found it fairly early. I am stage 1 and had my lumpectomy back in Feb and my lymph nodes are 0/4. Right now, I have to make the decision of which oncologist and treatment to go with. I've met with two oncologists and they offer two very different chemo treatment plans for me. I really am at a loss as to which to go with. How does anyone make a decision like this?
The first doctor wants me to undergo ~6 months of chemo. For the first 3 months, it will be 12 cycles of Taxol + Herceptin + Perjeta done every week, each lasting 4 hours or so. After that it will be 4 cycles of Adriamycin + Cytoxan every 3 weeks, around 2hrs each. He did mention that the anti-HER2 therapy will go on for one year.
The second doctor suggests 6 cycles of Taxotere + Carboplatin + Herceptin every 3 weeks, with each session taking 4hrs or so. After which I will continue taking Herceptin for 11 more cycles every three weeks.
At first glance, my first instinct is to think that the 6 cycles of TCaH would be more manageable seeing as it is way less cycles total, not as frequent (more time to rest?), around a month shorter and overall just a lot less hours. However, looking through some of the threads gives me the impression that Taxotere may affect me more than Taxol would. I understand that there is no true right answer and I am fairly comfortable with either doctor. Am I right in that the weekly treatments might not necessarily be worse? My family leans towards the 2nd option as they think that the less time I spend sitting there doing chemo, the better. I'm as indecisive a person as they come and this past few months have not been easy for me.
PS. I am making some guesses with the mildly legible handwriting of the first doctor so I do hope I did not get the names wrong.0 -
darksparks - both regimens suggested are aggressive treatment, mainly driven by your age I would presume since your tumor was relatively small and you are node negative, and I am so sorry you find yourself here so young! Both regimens are legit choices for Her2+ breast cancer. The chemo regimens are different, but comparable in efficacy and the decision often comes down to personal choice. It is unusual for the Taxol component, with targeted therapy of Herceptin and/or Perjeta, to be given before Adriamycin/Cytoxan. Generally it is dose dense AC given every two weeks for four infusions, then weekly Taxol given with H&P for 12 weeks. H&P can't be given with the Adriamycin portion of the chemo because both the targeted therapy and the Adriamycin are cardiotoxic. Giving the Taxol first means that targeted therapy would have to be stopped - not knowing whether the ER+ or the Her2+ aspect of your cancer is more aggressive , I might hesitate to start the targeted therapy only to have to pause it. If you have a personal or family history of heart disease that should be taken into consideration, the cardiac impact of the targeted therapy drugs is usually reversible, but damage from Adriamycin can be permanent. You have decades of life in front of you so this is an important thing to think about and discuss fully with the oncologist. Your heart will be checked with an echocardiogram or MUGA scan before you start any chemo regimen that involves targeted therapy, and should be checked quarterly over the course of the year of targeted therapy. TCH(P) has less possibility for cardiac impact, is a slightly shorter time period, but Taxotere carries a risk of permanent loss of hair. This is a more rare side effect but you should be aware of it. Some choose to use cold caps to preserve hair, and these work better with this regimen than any involving Adriamycin. One of the decision points for some people is that Dr. Dennis Slamon, the researcher that brought Herceptin to its current availability and changed the game of Her2+ breast cancer, favors the TCH(P) combo. My oncologist does not personally use AC-TH(P) for his Her2+ patients because of the cardiac implications, but does use AC-T for non-Her2+ patients. Comparing Taxol to Taxotere is a little bit of apples to oranges - Taxotere is a much stronger drug, but you have a longer interval between infusions. You would receive Taxol in smaller doses, but get them weekly for a long period. Neuropathy is usually more strongly associated with Taxol than Taxotere, but both drugs can cause it. This is a difficult choice, I would ask your prospective oncologists to fully explain their rationale of one over the other. Sometimes it comes down to practice philosophy, geographic location, personal experience - but not necessarily individual patient criteria. I will say that if you look at the signature lines of people who post on this thread you will see both AC-TH(P), and TCH(P) used, and also for those with tumors smaller than 2cm, with negative nodes, you will see some who have had single agent chemo Taxol plus Herceptin for 12 weeks. Looking at signature lines might be helpful in making your decision - see what characteristics went with which regimen choice. Wishing you the best - we are here for you, please ask questions when/if you have them.
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"Generally it is dose dense AC given every two weeks for four infusions, then weekly Taxol given with H&P for 12 weeks. H&P can't be given with the Adriamycin portion of the chemo because both the targeted therapy and the Adriamycin are cardiotoxic. Giving the Taxol first means that targeted therapy would have to be stopped"
@SpecialK That does seem odd. I was not aware that they cannot be given together and will ask my oncologist about it.
Thank you for the insight and advice. With all that information thrown at me by my oncologists, I had not thought to ask about the risks that each regimen had over the other!0 -
darksparks,
I don't know if it matters that much whether you do AC first or T(HP) first. If you do AC first, you're delaying the targeted therapy (Herceptin + Perjeta). If you do T(HP) first, you do stop the HP to do AC.
I did AC first, and it was worse than T(HP) in that it gave me some serious chemo brain. I was working through chemo (teach at a university), and I had to write all my lectures out verbatim so I didn't lose my train of thought. However, because AC seemed harsh, T(HP) seemed much easier, give or take some diarrhea which I managed with Imodium.
I did not get serious peripheral neuropathy from T(HP), which was great, though my fingertips are still a little clumsy to this day.
My oncologist found that many of her patients struggled to get through TC + HP, but that they tolerated AC + T(HP) better. However, based on my unscientific observation of my oncologist's waiting room, many of her patients are older. (I was 46 when diagnosed.) Someone young without pre-existing conditions might breeze through TC + HP, and plenty of BC patients on this board have made it through that regimen.
Good luck!
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I'm curious as to why your one MO is suggesting Herceptin+Perjeta while the other only has Herceptin? If your Tumor was under 2cm and no nodes I'm not sure you'll get approval.
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