TRIPLE POSITIVE GROUP
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Hi jh40,
What you are going through is extremely common, imaging is only indicative, and the final staging is determined by the results of surgery. I understand your shock and frustration. I had a lot more cancer than the imaging predicted, so I can relate. Very, very common.
Please take solace in knowing that your tumour is still small, early stage, and your nodes clear, which is excellent news, and indicative of a very good prognosis!
Keep us posted of your next steps -and if you share the details of diagnosis and treatment, that would help others give advice.
Best
LaughingGull
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jh40 - my regularly scheduled mammogram showed no masses and no DCIS, but I did always have multiple palpable lumps, so often my mammo was followed by US. The US a few minutes later showed something with a slightly irregular border, along with the usual multiple smooth bordered cysts that had been seen and monitored for many years. Biopsy showed DCIS and IDC, with the measurements during the US backed up by MRI later. MRI indicated cancer only in the right breast, clear nodes. Because I image so poorly, and had a 20-year history of problematic cysts, I elected a bi-lateral mastectomy. Surgical pathology showed DCIS/IDC in the right breast with cancerization of the lobules also, and surprise ADH/ALH in the left breast. Cancer side SNB was initially clear in the OR, but later in the more thorough exam in the lab I had isolated tumor cells. My surgeon and oncologist insisted on ALND surgery five weeks after BMX (because of the Her2+) and that showed a much larger tumor in the additional nodes removed. It is indeed frustrating that we do not have better tools, but progress is always being made. Not particularly helpful in the now, but hopeful for future patients. Hang in there!
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laughinggull- thank you for sharing your story. It does make me feel better that I’m not alone. I do still wish imaging was better but I guess if imaging was faulty enough we wouldn’t have such good survival rates. My oncologist said the same thing: keep your focus on the fact that it’s small still, and the prognosis isn’t any different.
specialK - it concerned me about the single isolated tumor cell in the one lymph on an IHC stain. Nothing in the second lymph. Should I have asked them to dig deeper? I know your situation is different to mine but is yours unusual? My surgeon took a conservative approach - which I appreciate - but I certainly wouldn’t want to miss anything.
My path showed IDC (no special type) clear margins (distance to closest margin 3mm), mentioned multiple benign cysts and mentioned uninvolved skin. DCIS present but negative for EIC and didn’t involve the nipple, and had clear margins. No microcalcifications. ER 70%, PR 75%, Her2 80%. Ki-67 40%. Grade 3. My left breast (which was not taken off) was noted as “unremarkable” on earlier imaging.
My Oncologist didn’t seem too concerned about the path. He said that if there were any cells floating around in there that the Taxol would kill them. He also said it was up to me if I wanted Carboplatin or not. He said that with the size of the tumor it technically still qualifies for weekly Taxol and Herceptin as a treatment plan, and he was fine with it because studies show it’s effective, but he said if I wanted to throw the kitchen sink at it he would support me. Not sure what road is best with that?
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I know I would go kitchen sink -but I am not you
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jh40,
I did a harsher chemo regimen than you (Adriamycin + Cytoxan then Taxol X 12 + Herceptin + Perjeta). However, my tumor shrank the most from the Taxol + Herceptin + Perjeta. Your tumor is small; studies show that Taxol is effective for small tumors; I'd do it.
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laughinggull & elainetherese - thank you for the input. I’m also getting a 2nd opinion on the 18th just to be sure. I’m curious what she has to say
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jh40,
I am triple positive and have two tumors in my left breast, the larger is 2.3 cm. My MO said that TCHP was standard of care, but I was eligible for the COMPASS study, which is investigating de-escalating the chemo part of Her2 positive treatment, and if I did it I would get Taxol weekly x 12 plus herceptin and perjeta. This is the standard of care for tumors under 2 cm. She strongly encouraged me to do the study, as both herceptin and carboplatin are hard on the heart. I took her advice, and just today finished week 8 of 12. Last week my MO did an exam and said my tumors have shrunk considerably and she can barely feel them. I am hopeful for pCR, but even if not, this regimen has been very effective and I have had very few side effects. ( I actually get Kanjinti, which is an herceptin biosimilar- basically the same drug by a different manufacturer). My hair has been shedding since week 4 but I still have enough that nobody notices that it is very thin. On TCHP there is the rare possibility that the hair loss will be permanent.
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jh40 - I am inclined to think that your single nodal cell may have been an artifact from biopsy, with the node doing its job of catching it if it was dislodged from the tumor during the biopsy process - as long as there was due diligence done by the pathologist in looking for more cells in the material provided post-surgically. In light of finding only one I would assume it prompted a thorough exam to find any additional. And, yes, my situation was indeed unusual - I believe in only about 10% of cases do you see my example, so the odds are definitely in your favor. My tumor was strongly ER+ and Her2+, but weakly PR+, which is potentially more aggressive, and it was 2.6cm so it had been there for a while, and this was possibly responsible for the nodal situation. It is a hard call as far as removing more nodes, but the sentinel node biopsy process has been around now for many years and the data collected guides surgeons on how to proceed if ITC are found. Removing more nodes increases the odds that you could develop lymphedema, which you don't want. Since you will now move to systemic treatment it will hopefully provide remedy if there are any additional rogue cells remaining in the axilla.
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maggiehopley- thank you so much for sharing that. I have concerns about my heart - like most do, I’m sure - going into this. I’m 40, and am in good health, but I have a terrible family history of heart problems. I don’t want to make it worse than it has to be. My mind plays up on me, wondering if by foregoing Carbo I’m making the wrong choice, but I guess I just have to trust the standard of treatment.
I’m so glad it’s been effective for you. You mentioned your hair is thinner but it’s not very noticeable - that’s the same scenario another woman has shared with me. I’m hoping it will turn out like that for me too. Did you try tocold cap?
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specialK - thank you so much for coming back to me with your thoughts. I hadn’t thought about the possibility of it being dislodged in biopsy. I do distinctly remember the radiologist who did the biopsy saying “Oh...the tumor is destroyed...” after his 5th pass of it. I thought about that for weeks after, wondering what that meant for me. So what you said makes a lot of sense in relation to that.
The single cell was in the first lymph and found on IHC. Assuming it was sliced thinly enough I’m sure more would have been shown in the slides if they were there. I was appreciative of the fact that the pathologist made the effort to make the distinction of there being only 1 as well, rather than just noting something more vague. The second node showed nothing at all.
My onc said the same thing that you said about the chemo hopefully knocking anything rogue out. Will I get a PET scan at the end to have some indication of success? Would rogue cells show?
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jh40- I did not cold cap, as the time and expense wasn't worth it to me. I am icing my hands and feet (I bought the NatraCure socks and mittens from Amazon) and they have been very effective at preventing neuropathy. I wear thin socks and cotton gloves (gloves from Walgreens in the medical section) because I couldn't tolerate the cold without them.
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jh40,
It's unlikely that you'll get a PET scan at the end of treatment or that it would show any lingering cancer cells. Such cells are too small to be detected by scans. Also, PET scans produce all sorts of false positives. Three PET scans showed something on my right femoral neck (hip), but when MO ordered an MRI, there was nothing there. My next-door neighbor cracked a rib, which was detected by a PET scan, but it wasn't cancer, just a cracked rib. Unless there are symptoms of metastasis, MOs typically don't order PET scans.
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maggiehopley - thank you for that info about the Natracare socks! I’m considering getting those. I’d seen some other ones on Amazon that look like a gel ice pack that looks like a space boot, but the Natracare looked softer.
elainetherese - this is good to know about the PET scan, especially the false positives. Goodness knows that’s gotta be stressful.
Side note - my oncologist prescribed me Compazine? Anyone have any experience with this? I’m wondering if he is avoiding the Zofran because I can’t take steroids? I’m seeing that Compazine can cause some anxiety and jitters.
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jh40 - my oncologist prescribed three anti-emetics for home use, in addition to the infused one (Aloxi) that was a pre-med before chemo. The order for them was first Zofran, then Compazine, then Ativan. I was to start with the Zofran, if it didn't work I was to move to the Compazine, then if that didn't work, the Ativan. They can be used one after the other as they work by differing mechanisms. I am the unusual person for whom Zofran is useless, and I get the crushing headache from it as well - I vomited/dry heaved despite taking it before I experienced any nausea. I then took the Compazine and it was excellent for me. From that first round on I just took the Compazine and had no problems.
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specialK - thanks for that. I take Ativan currently as needed for anxiety and I’m told it works as a good anti-nausea drug although I’ve never used it for that purpose. But it’s good to be familiar with it. Zofran I had after surgery but only one time. Didn’t have any bad reaction to it. I’m glad Compazine worked for you. Some things you read about it vary widely - people either have no trouble, they feel jittery and anxious, or they’re having full blown, terrifyingpanic attacks. I guess everyone is different. Hopefully it will work well for me.
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hi again!
met with a 2nd oncologist today. she recommended the carbo with the taxol and perjeta. she didn't really give much explanation as to why this would be better than weekly taxol/herceptin only. i almost feel like i need a 3rd opinion now. i asked her for some data/studies showing how it would be more beneficial for my situation and she said she'd get me the info, but that i have to keep in mind that they would include a cohort of stage 2 and 3 patients as well. does anyone have any studies on this? it was my understanding that weekly taxol is effective? the first oncologist i saw said that it was, and that i could do carbo if i felt i wanted to throw the kitchen sink at it.
she also said that i have a seroma near my armpit, and said that she hoped it would resolve on its own because draining it usually causes them to return. i'm a bit concerned about this getting exacerbated by a port placement. anyone have experience with this?
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jh40 - The second opinion is definitely harder to do. I'm surprised at it, frankly. Depends on other variables - like your age and whether you "want to throw the book" at it. I did just Taxol and Herceptin - so called, "chemo lite." and am coming up on six years cancer free.
I loved having a port (if you can love anything about cancer.) They put it on the opposite side as my cancer breast. I was superstitious about taking it out but MO assured me that she didn't think I would need another one.
Whatever you ultimately decide, I encourage you to join a group "starting chemo on _____, 2022. My group started a private Facebook page and still keep in touch.
I know that you have had a lot of info thrown at you and it is hard to process but it sounds as if you are doing your homework.
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jh40,
1946taco is one of the several participants on BCO.org who successfully did the Taxol regimen. There are studies which show its efficacy, though I don't have the citations at my fingertips right now. I did Adriamycin + Cytoxan and then the Taxol X 12 + Herceptin + Perjeta, and I can tell you that THP was way easier than AC. THP did give me diarrhea, but I managed that with Imodium. The other annoying side effect: it made food taste unpleasant. However, there was far less chemo brain than on AC, and I was able to work through it. Keep asking questions and decide what's best for you! Good luck, whatever you decide.
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Thanks elainetherese and 1946taco. I appreciate the input. I think I will look to join a Starting Chemo group.
This 2nd oncologist ended up emailing me a PDF with some links to studies that showed the efficacy of TCHP in the neoadjuvant setting, and mentioned that there was a higher pCR in the cohorts that did the TCHP vs THP with ER/PR+ / Her2+ patients (73% vs 66% respectively). But then she also included a table that showed the TH x 12 and noted it as the "best regime", and wrote in that adding Perjeta to TH would mean a "<10% improvement in efficacy based on neoadjuvant trials". Here's the info she sent in case anyone is interested:
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC62357...
https://ascopubs.org/doi/full/10.1200/OP.21.00020
She also mentioned that ER/PR+ Her2+ patients get the most benefit from Neratinib and offered to let me try this as well, though I'd heard a lot of women have bad diarrhea on this and that the benefit might be fairly small?
My original oncologist wasn't too keen about adding Perjeta to the TH x 12 treatment plan that he favors. He says he really only uses it with the Carbo. So two opinions that are pretty much opposite on that.
Anyway, thanks for all the insight and if anyone has anything more to add I'd love to hear it.
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jh40 - regarding neratnib, I did it and it wasn't bad at all. I didn't have a lot of diarrhea but my BMs were, um, powerful while I was on the drug. It was actually kind of nice in that I could eat whatever I wanted and didn't gain any weight. That ended abruptly when I stopped taking the drug, which coincided with the covid lockdowns (cue stress eating). There were some other ladies on it the same time as me (there's a thread somewhere around here) and a few of us tolerated it very well, laughinggull was one of them. But if you do neratnib it would be after finishing herceptin, so that is a long way off. I think most MOs are titrating people up to six pills a day to avoid the terrible diarrhea that people were having with it in the beginning. The nice thing about drug therapies are that if you have terrible side effects and it's intolerable, you can just stop.
Re: THP vs TCHP, that's a tough choice. If you get PCR, you don't have to worry much about recurrence, but I don't know if the improved likelihood of PCR is worth possibly losing your hair permanently. I cold capped on TCHP and my hair still fell out. It grew back, but my eyebrows and eyelashes did not come back as they were, and I think I have a lot of company in that regard amongst triple positives.
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hapa - thanks for the insight. I’m not too scared about diarrhea as long as it’s not impeding normal life too much. As in, I’m able to go to a store and shop without running to the bathroom constantly. Sounds like it’s not that way. I’d give it a shot. Eating without weight gain sounds pretty good! LOL
I had surgery first and my surgeon got clean margins, clinically node negative. So I’m still not sure why she felt the TCHP would be better than just TH other than that I’m younger at 40. My first oncologist didn’t recommend Perjeta at all.
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jh40, my guess as to why one oncologist is recommending the TCHP is because of your age as BC in younger people can be much more aggressive. You could look at as 'erring on the side of caution'. As I'm 76 I wouldn't be as concerned re 'erring on the side of caution' - I would go for perhaps lesser side effects than hoping to be around for the next 30 or 40 years. I am now 13 years out from diagnosis and life is good (I was triple positive). The one thing I can pass on is to also consider how you comfortable you are with the oncologist as you will be contact for quite a while. I loved, loved my oncologist. He had all the information, great bedside manner and he was very kind. I was so lucky.
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Me again, with more rash problems! I have 2 Herceptin left, or maybe 3. Not many, is the point. For the last few infusions I've been getting a lot of red bumps coming up over my left chest/breast (where the port is) that intensify after the infusion and then get a bit better by the next one. It's started moving to my upper back as well and today I had a bit of itching around my port as it was going in. I was told to take Benadryl at home and then start a regimen of Pepcid and Claritin every day, and call them if it gets worse or doesn't get better. Ugh. Anyone had anything like this?
My BP has also been high at the last two visits. Normally I'm right in the 120s/80s but last time the first reading they got was 160/105 and then 140/95 on the second try, then today they took it four times over an hour and it was always between 140/90 and 150/100. I was instructed to buy a home BP monitor and check it every day and call them and my PCP if it stays like that. I went to the pharmacy and did it right when I got home and it was 128/84. I have never had white coat hypertension and they have months of data of me being within a certain range, even when I was starting chemo and very stressed out. That's the only thing I can think of but I am baffled. Why now? High blood pressure can be a side effect of both Herceptin and exemestane but then why was it normal again later? Is the home machine bogus?
I'm frustrated because I thought I was done with problems once Taxol finished and everything was a total snooze for months. Now suddenly I've got rashes again, and hypertension. Just stop already!
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Thanks Hapa for sharing your neratnib experience. I have my last Herceptin on September 1st and am thinking of giving neratnib a try. Did you start neratnib fairly soon after finishing Herceptin?
Gamzu- sorry I have no real answers for you. I'm just sorry your experiencing the rashes and BP issue. I had a slight drop in EF on my last echo but my oncologist wasn’t to concerned. How is the AI's going for you?
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Thanks 1982M. I've checked my blood pressure about 10 times in the last 24 hours and it's consistently fine and in normal range. So I have no clue what the deal is but I'm reassured by that. The AIs have been going fine, the expected joint pain and stiffness but it fades if I move around. And zero complains about no periods!
However, I went to the bathroom at work during lunch today and realized that my face was suddenly very red and I had some big red blotches on my neck, chest, and stomach. This was almost exactly 24 hours after the last Claritin/Pepcid. I took another round and it was gone 30 minutes later, though it's come back in the last hour and is fading again. This is exactly what used to happen the day after Taxol. I probably should have called the MO's office but I couldn't stand the idea of messing up my work day being told to take Benadryl or having to go in when past experience tells me it's probably OK for now. I'm going on vacation Sunday and I don't want it ruined! With Taxol it did eventually build up to anaphylaxis but not until the infusion itself when my body decided it was one too many. I sent a message through the portal in case they want to try Benadryl in advance next time and I need a driver (have never fallen asleep but won't risk it) but I'm more annoyed than anything, and concerned that this might mess with my MO's willingness to try Nerlynx.
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My MO says it’s an “immunologic reaction” and is starting me on prednisone and some kind of cream with a long name. I guess that means my immune system is overshooting the mark instead of targeting its ramp up just to HER2+ cells? Now I’m wondering if the weird leathery patches up both sides are due to Herceptin, not a chemo after effect. Maybe they will go away!
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Gamzu, you might want to tell them to run your herceptin for 90 minutes. How many minutes are they running it now?
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It's 30 minutes now. That's an idea, I'll ask about that. I'm not sure it would help--it didn't end up working for Taxol. But it's definitely worth getting their thoughts.
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I had a 30 minute when I started on herceptin only and it was kind of wierd so the next time they ran it at 60minutes. If I'd known then what I have learned here I would have had a 90 minute infusion every time.
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I had my monthly Zoladex today and spoke to the nursing team. I had another run of rashes over the weekend. These latest ones appeared to be set off by any kind of warmth or heat, particularly the shower, though it lingered well after the skin had cooled down. It looked so weird that I sent pictures to the team through the portal.
Anyway, this is my third day on prednisone and the plan for now is to continue that and the Claritin, double the Pepcid, and to call them immediately or just come in if the rash starts breaking through even on the prednisone now that I've been on it for a few days. My next Herceptin is scheduled for next week and they squeezed me in for an emergency appointment the day before with my oncologist (a feat in itself) to do an in-person assessment and have a discussion with me about whether we try to limp through the last two rounds with all these meds and almost certainly doing 90 minute infusions instead of 30 (cowgirl, you were right on!) and maybe trying some other mitigation tactics, or whether we stop early. The past history with Taxol and how similar some of this is looking to what happened with that, has the nurses worried.
The lead nurse also warned me that I should not expect to be tapering the prednisone anytime soon and it's probably going to be longer than anticipated. I also had a couple of days with random hypertension this week (160/110!) but a lot of normal readings as well and today it was 121/81 at check-in so our current hypothesis is stress, both mental and physical.
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