ER-, PR-, Her2+ Roll call
Comments
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Thank you, BSandra. I have asked my MO for her rationale. The flow chart seems to suggest it's one of two standard courses (lower left) to receive only Herceptin if you are ER negative. I have good insurance and I'm not concerned about cost and I'm not unwilling to take Perjeta. I guess it's more of a quality of life/side effects vs benefit concern for me. I'm 6 months into my year of Herceptin now (3 months PFC).
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MochiPie,
This may be old information as it comes from August of 2018, but at that time, a HER2+ tumor had to be 2 cm or Perjeta would not be included with TCH. At my biopsy, my tumor was 1.5 cm, and then measured 1.9 cm on physical examination at my first appointment less than two weeks later. My MO said that day we would do an MRI, because he felt it would push me over the line to receive Perjeta. The MRI measured it at 7 cm, and showed it as having invaded the nipple. Suddenly I qualified for Perjeta and radiation--and Nerlynx didn't seem like such a foolish idea, either. That said, after a pCR at surgery, my MO continued Herceptin only for the remainder of the year.
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My MO clarified that since my tumor was 0.9cm the standard of care is Herceptin only, even with hormone negative Grade 3 status. I don't feel like it's necessarily foolish to exclude Perjeta. I'm curious about other stage 1A node negative ER- PR- HER2+ patients on here have had disease progression without Perjeta. I honestly feel like I'm getting the medicine I need to prevent recurrence, and I'm a pretty cyincal/skeptical person in general. I welcome any 'change my mind' conversations, please! What would you tell your MO if you were in my shoes and strongly felt that Perjeta was essential?
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MochiPie, I am in your boat (except I chose a mastectomy), and I did not hesitate turning down the Perjeta. I considered it to be a weight-loss drug, and much too expensive for that. I continue to lose weight, walking 3 miles a day with my dog.
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Basically - all of us can weigh in with what we did & what we personally believe. It still comes down to you and your oncologist making a decision together. We'd like to believe that these are our bodies and we are in total control, but it's rare that even the most educated of us has studied oncology or has the ability to keep up with the new things that come out every day. Yes - read & learn, but then have the discussion with your doc. Push for what you want, even be wiling to go for a second opinion if you have doubts about his or her advice. But in the end, each of us has to make choices based on our own understanding of medical science and trusting our medical providers..
That said - like McBaker I chose a mastectomy - one and done, clean margins, totally clear - because it fit my age & quality of life requirements. Two years later "it" came back as Stage 3. So yes, at that point I threw the kitchen sink at it.
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MochiPie, I believe in your case, early breast cancer with tumor less than 2 cm, Perjeta is not even approved to be used. This is from Genentech website:
PERJETA® (pertuzumab) is approved for use in combination with Herceptin® (trastuzumab) and chemotherapy for:
use prior to surgery (neoadjuvant treatment) in people with HER2-positive, locally advanced, inflammatory, or early stage breast cancer (tumor is greater than 2 cm in diameter or node-positive). PERJETA should be used as part of a complete treatment regimen for early breast cancer.
The main question is for node negative patients with tumors greater than 2 cm.
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I was considered node negative with a 2.8cm tumor so they called me 2a and I did TCHP. (One node looked suspicious on scans, but biopsy didn’t catch any cancer.) It wasn’t even really a conversation about the TCHP though — the doctor said that’s what they recommended and when I talked to my nurse mom who runs the clinical trials program for her small hospital in Oregon, she said TCHP was standard - so I went with it.
I’ve tolerated the Perjeta fine. I have diarrhea more days than not, but most of the time it’s just “the runs” rather than being painful or super duper “oh no” urgent. Plus Imodium tends to keep it under control.
I had PCR with TCHP and my MO said that all but one of his patients has had PCR since he added the Perjeta to the standard mix. I’m also glad I did the Perjeta because when they did surgery it looks like my “negative” node may have actually been positive since it reacted to the chemo like there was cancer in there.
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Melbo, I second very much to what you say. Perjeta is added with minimal SE and more PCRs generally are observed. Anyways, my point for this discussion was that "LN negative" is a tricky thing, I know it from our own experience:/ Saulius
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Hello everyone,
I was wondering if anyone originally had zero lymph nodes positive at surgery, but went on, years later, to have bone mets?
Thanks
Mausie
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I had my appointment today. I have been approved for Prejeta. I should do the one step at the time thing more often. I made it a hard week on everyone around me trying to figure out what to do if I am not approved and it didn't come to that at the end.
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Dear Aram, congratulations - one more step to a cure! Saulius
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Thanks Saulius.
I had a very strange reaction to Kanjinti yesterday. About an hour into the infusion I got the worst chills of my life and I started shaking uncontrollably. They stopped the infusion and administered Benadryl and Pepcid. That calmed the shivering down a little bit and the nurse resumed the Kanjinti after checking with the doctor. The nurse told me I am not the only one with this reaction but I had never seen it on BCO. Any of you had a similar experience with Herceptin/Kanjinti and does it get better in future infusions?
Thanks.
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Aram - I received Kanjinti for 5 infusions before I was switched to Herceptin. I didn't have chills, but my first infusion was either 60 or 90 minutes and about 5 minutes before it ended, I had facial flushing and alerted the nurses. I had the same outcome - stopped infusion, more Benadryl (IV this time), restart infusion. I was fine for every other infusion without additional meds, though I had IV Benadryl for all subsequent infusions.
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Thanks MochiPie. I was very concerned yesterday that I might not be able to handle Kanjinti/Herceptin. I did a little bit of Googling and it seems 40 percent of people got the chills during trail. I am not sure why it was not mentioned to me as a common side effect.
Do you know why they switched you to Herceptin?
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Aram -
Interesting question on the switch. I was told I was getting Herceptin, and my care plan mentioned Herceptin by name. Evidently the month I started treatment, the hospital switched to Kanjinti. I was never told I was getting Kanjinti and never gave informed consent for a biosimilar. In fact, I was told, here are your meds, please go online and research them and let us know if you have any questions about side effects, etc.
I hit the roof when I figured it out, and asked for a medical, not fiscal reason for the switch. Plain and simple, Kanjinti "works the same" but is cheaper. I have good insurance and I said I wanted Herceptin, the drug with a longer track record of successful patient outcomes and with a longer FDA approval. I think Kanjinti was approved in 2018 if I recall correctly. Some nurses were trying to say it was a generic version of Herceptin, which it is not. Ultimately I would probably have been fine with Kanjinti, but I really felt like some shady business was going on in order to save a buck. Not to scare you, as plenty of people on here are taking Kanjinti. I'm still pretty livid about the switch, to the degree of "now we're going to start your Herceptin" in the infusion center. I don't do well with feeling like I'm being deceived as I'm one of those skeptical/trust nobody people. However, I had no reason not to believe them. I've checked every single infusion bag since I found this out, and you should check yours too just as a failsafe.
Credit to my oncologist, who met with me after I noticed the switch, and said it was a recent decision to switch that was not made at her level, but higher up and hospital-wide. She said that clearly there needed to be some staff education/training happening as nobody should be referring to Kanjinti as Herceptin. She was also going to escalate the issue to be sure that other patients were not also told they were getting Herceptin, because it's given to people with other cancers than just breast cancer. I think I sort of forced the Herceptin issue anyway since what they did to me was unethical and illegal, but in the end I got it and I'm still getting it. Also, pretty sure the manufacturers of Herceptin would not appreciate patients being told they were getting their med and then getting a competitor's med instead.
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MochiPie, that is very wrong of them not to inform you. My doctor mentioned from the beginning it is Kanjinti. At the infusion site, nurses and pharmacists call them by their chemical names: trastuzumab and pertuzumab. Also before getting each drug, the nurse shows me the bag to validate my name, date of birth and the medication name. I was under assumption that is the standard everywhere.
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Yes, little need to drop names in a situation like this, but I will. I doctor with Mayo. and anything other than "the nurse shows me the bag to validate my name, date of birth and the medication name. I was under assumption that is the standard everywhere." would be an egregious violation of procedures.
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Sorry, all re: Kanjinti substitute and ethics. To clarify, the nurses did verify my name and DOB and said the mg of trastuzumab I was getting. And then they would say to me, "ok so this is your Herceptin," only it was Kanjinti (trastuzumab-anns) at the time and not actually Herceptin. But my written plan of care says I'm to get Herceptin, and you can be sure I have saved screen shots of that!
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Dear Aram... seems like some allergic reaction? Could it also be the infusion solution was too cold? My wife gets Herzuma - our NCI does not buy Herceptin anymore:/ Anyway, I never understood Roche (okay, I understand they wanna profit as much as they can but they had Herceptin patent for 20 years and it was a total best-seller) why make Herceptin so expensive - even biosimilars, although cheaper, are aligning to that price. Roche could drop the price for competition reasons but they are not doing it. Means probably trastuzumab's days are over - other novel, improved trastuzumab, antibodies are coming... Saulius
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Hi Saulius, yes apparently an allergic reaction. I looked it up and apparently in trials about 40% of participants had the chills. I was surprised because I didn't know but the nurse told me it is very common. I wish I knew before starting though, I was so concerned that we might need to stop Kanjinti and that is an awful news for Her2+.
I don't understand pricing of Herceptin either. It is just so expensive that for years, many couldn't afford it around the world. I am very happy there are biosimilars now and more accessible to everyone but I still would have liked to have Herceptin itself just because of the longer time it has been used. My MO mentioned Kanjinti has shown slightly better performance in trials. Hopefully that is the case.
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Dear Aram, I think Kanjinti showed better results because it has another chemical formulaiton and maybe is more deliverable to tumors (do not know the details but trial clearly states it is more effective) - that is good news. I also think your next infusion will be different from the last one - body adjusts itself with time. Saulius
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does any one know if Kadcyla can be given with out steroids.
I May have atypical stress fracture of my both femurs from steroids. I’m also taking Boniva for for osteopenia
and according to insert Boniva can cause this atypical stress fractures and is aggravated with Steroids.
Thanks
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I have never taken steroids while on Kadcyla. Been 2 years.
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Anyone here was prescribed nerlynx? I can fibd studies for triple positive but not for hormone negative, Her2 positive. Does anyone know why and point me to related studies?
Thanks.
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Sorry I don't know Aram - but would be interested in the answer if someone else can chime in.
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Dear Aram, why Nerlynx for you, or it is just interest? Saulius
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Saulius, I want to understand why it is not offered to early stage hormone negative, Her2 positive. From what I understand one of our highest risks is brain Mets as HP does not pass through brain barrier but Nerlynx does. So why it is not offered? I see Extent trial showing benefits for triple positive but I don't see much about HR negative.
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Hi Aram,
Sorry to pop on your chat! Lol. I'm triple positive but watched YouTube lectures and read journals about Nerlynx to see if it was a good option for me. I summarized my understanding to see if it would help you!
I think the reason it's used with high ER/Her2 positive is that people who have high ER and Her2 end up with a 'cross talk' bc of two strong tumour drivers. So people like me actually derive less benefit and less PCR using traditional Her2 targets like Herceptin. People who are Her2 enriched respond better to traditional treatments and have the greatest risk of replace within the first 5 years, much like triple negative.
ER/Her2 positive have a continual risk of recurrence until that person dies. I was told I have a stead 1% chance of replace per year for the rest of my life (so 10% chance of recurrence by the time I’m 49).
Nerlynx showed only small benefits in the first five years, where Er+/Her2 relapses are lower. However, when they reassessed data at 8 years they noticed a split between Er neg and Er positive people and a lot more benefit was being shown for Er positive who have a persistent risk of recurrence/relapse due to the cross talk between Er and Her2.
I think there are prob better Her2 targeted therapies for Er neg/Her2 positive people if they don't achieve PCR then Nerrlynx. The diarrhea side effects can potentially be severe, and with only a slight benefit I wonder if that's why it's not used in Her2 Er-?
Sorry to interrupt! Not sure if I'm right on this…. but that's my understanding.
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Hi 1982M, thank you for your explanation. If the benefits are mostly after 5 years then it makes sense it is not always recommended for ER negative. Do you remember where you saw this information regarding after 8 years it is beneficial to triple positive?
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I don’t remember the exact link- I read a lot and watched some online tumour boards.
I quickly googled 8 years neratnib and here’s a summary of 8 year data:
“However, neratinib versus placebo did not appear to improve OS among HR-negative patients (n = 1209), with OS rates of 88.1% and 90.3%, respectively (HR, 1.18; 95% CI, 0.83-1.69).“
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