ER-, PR-, Her2+ Roll call
Comments
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Hi Aram, MO did a thorough explaining of each of the chemo options, pros and cons, overwhelming for sure. What threw us in a loop was the FEC-DH option which I wasn’t prepared and didn’t do research on it. MO suggested FEC-DH because Nicole is type-1 diabetic. However, Nicole is 40 and is managing her diabetes really well (up til recently, but still managing pretty good due to stress with the cancer diagnose).
I think we will consider ACTH(+P) or TCH(+P), we have an appointment with cardiology oncology team next week to check on Nicole’s heart and then we can make a final decision. Will discuss with Nicole and ultimately it will be her choice. We have a few days to decide. I do think all 3 options are good options
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the increased risk for neuropathy is definitely something to consider. I don’t know what the statistics are for neuropathy issues with the TCHP, I can only speak to my personal experience, so take what I say with a grain of salt. But I did not ice my hands or feet and I only had very mild tingling in my fingers (mostly my little fingers) and no tingling of my feet. The skin onmy feet did peel really badly during my third round, which made walking a little difficult since my feet were tender. The only other issue was that it hurt to grip and turn things (like bottle tops) — so I made my husband open everything for me.
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thanks Melissa! Did some reading on FEC-DH and looks like all 3 treatment results are a coin toss with FEC-DH having the least chemo dosage.Side effects(permanent) will probably be the deciding factor.
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Hipchyen, I did FEC D as first line of treatment neoadjuvant. FEC no problem but found the Docetaxel very difficult. I have mild neuropathy in hands and feet. All chemo comes with risks and how one person responds may differ greatly to how another manages. Good luck with your choice and treatment.
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thank you for the feedback helenlouise!
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Hi pchyen, has your wife chosen her treatment yet? I hope everything is going o
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Hi Aram, thank you for the follow up. I think we (by we I mean Nicole has the final say) have decided on the dose dense ACTH+P treatment after lots of discussions. DDACTH seems to be the most aggressive and hardest treatment but hopefully will provide the best outcome for Nicole. Nicole is getting a port put in tomorrow morning. Have a consult with MO next Tuesday to finalize choices and chemo starts next Thursday.
Here in Ontario we have to pay Perjeta out of pocket, and my insurance plan unfortunately does not cover Perjeta. We are going through the process to request Perjeta to be covered by my insurance but that is a long shot. Will pay out of pocket if we can't get it covrred
Nicole will also get neulasta shot the day after chemo infusion.
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pchyen - have Nicole draw the outline of her normal bra strap on her chest w/a Sharpie before port installation. THen tell the doc not to place the port on that area. She will avoid lots of annoying & maybe painful rubbing down the road.
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Will do, thanks MinusTwo!
Just showed Nicole your tip,Nicole sends her thanks as well.
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I hope her port suegery goes well. I just got mine today as well.
I am very sorry to hear about Prejeta coverage. Now I am wondering if Quebec covers it. Google only talks about coverage for stage 4, and it seems Ontario approved it for stage 4 two years before Québec (2015 vs 2013). I need to contact my MO and ask about it.
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hi! My mom is suffering from spinal metastasis and i was wondering if is it possible for her to live long?
i love her so much she's my source of strength and losing her is my worst nightmare and it's something i can't imagine at al0 -
Thank you Aram. I hope Quebec covers Perjeta. In fact, all provinces should be covering Perjeta medication for neoadjuvant chemo to give patients better chance of pCR/NED.
ALovingDaughter, I am sorry to hear about your mom’s metastasis. I believe there are members here that can provide insight.
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My cancer was in the right breast. When they installed the port, I ended up with the evidence of attempts to put it in on the left side-- ten! They finally put it in the right side, increasing the likelihood of lymphedema. I understand it is more difficult to put it in the left side.
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Pchyen, I asked my MO about Perjeta when I was about to go through chemo. He said he doesn’t use perjeta at all. Something about side effects versus efficacy. At any rate, I didn’t get it. But he never said anything about it not being covered. That’s so interesting.
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Nicole got her port put in today, so far so good.
MinusTwo, thanks for the tip on the sharpie. That made the medical staff/doctor laugh. Doctor was apparently impressed according to Nicole, LOL.
DutchieGirl, in neoadjuvant setting it appears Perjeta is not covered by OHIP at this time, unfortunately. I believe Ontario covers Perjetafor metastatic stage to go with Herceptin.
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ALovingDaughter - sorry to hear about your mom. It's best if you stick to one thread. The one where you've posted that you have questions about Stage IV is a good one. Those ladies will be able to direct you to other helpful threads for spinal mets.
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pchyen: perjeta only has a 2% added benefit with Herceptin according to my MO. This would be the one she would have stopped if cardiac function was effected. I only had minor neuropathy with TCHP until all neoadjuvant treatments received. It progressed the 2 months following infusion # 6. MO didn’t think it was due to chemo, but, just saw neurologist who states it is normal occurrence if platinum-based drug , like Carboplatin is used. I did ice my feet and hands during treatment. Everyone responds differently though.
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Pchyen, I did all of my treatment without a port. I’m not sure what I was thinking but I was rushed into chemo so I didn’t have any time for that. I did make it all the way through (using only one arm!) but it’s not something I’d recommend. Glad tohear that Nicole got her port in! Best of luck to her (and you) and keep us updated!
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Hi Denise, thanks for the info on Perjeta. We will discuss with our MO. Probably will do Perjeta as part of ACTH treatment, 2% seems small but we will take any advantage we can get provided the side effect is acceptable.
Hi Lori-Anne, thanks again for the encouragement and well wishes! Wish we can get Nicole's chemo started, 5 more days. Nicole is in pain, clearly the tumour is growing.
Will keep everyone updated on Nicole’s treatment progress. I am sure we will have more questions later on
Question on icing of hands and feet with AC. I don't think I've read that it's required for AC but just wanted to confirm. I know to get Nicole to chew on ice chips during AC treatment to minimize mouth sores.
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I haven't read any benefits for icing hands and feet during AC. I did chew on ice chips on my first AC, second round the ice tasted super weird so I stopped. Fortunately, I didn't get any mouth sores so far. I am planning to do icing for hands and feet during Taxol though, and will chew on ice.
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Thanks Aram
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DeniseML, Perjeta+Herceptin&Chemo vs placebo+Herceptin&Chemo were analysed in APHINITY trial for EBC. Your MO is right about the absolute-benefit but please pay attention to very broad ranges for hazard-ratio (HR) with 95% confidence interval (CI), like HR=0.63-1.10 for HR negative disease (37 % better to 10 % worse, let's put it simple). I mean absolute benefit might be small for whole population but mentioned parameter spread say that single cases showed big-differences, so for young&strong I'd definitely recommend adding Perjeta, which can make a big difference for single outcomes. Saulius
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Saulius, can you please explain part? "I mean absolute benefit might be small for whole population but mentioned parameter spread say that single cases showed big-differences, so for young&strong I'd definitely recommend adding Perjeta"? I looked up the APHINITY trial, and from the results it seemed for Node Negative patients the benefits of adding Prejeta is really minimal. Am I misreading the results?
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Dear Aram, you take medians here but look at the Hazard Ratio spread: 0.69-1.53 for LN negative patients... 0.69 more or less means that there were patients who did 33% better than the median (which is 1.02). So, no, you are not misreading the median but there are other numbers behind it. Point is you will never know if you would benefit, unless you take the drug but if there were patients who had benefit, why not to try it? You can always drop it if something... Saulius
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Thanks Saulius. I will bring this point to my MO. His resident told me the benefits are minimal and it is not worth paying out of pocket. But the chance of 30 percent benefit doesn't look minimal to me.
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Dear Aram, well... there was a reason why Perjeta was approved along Herceptin for early stagers, right? I mean now everyone who is HER2+ gets adjuvant (postoperative) Herceptin and Perjeta for 1 year in many countries, except for those who really cannot (heart conditions, etc.), so to say there will be no benefit for you individually is a bit strange... Paying out of your pocket is another thing. Here in LT Herceptin+Perjeta are covered automatically for 1 year for every early stage HER2+ patient but I know patients who get only Herceptin because of heart conditions. Latest ESMO'19 guidelines also say that ER-/HER2+ patients could/should be given dual blockade in adjuvant setting. In any case I'd ask for more explanation from your oncologist. Saulius
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BSandra - am I reading this right?
https://www.esmo.org/oncology-news/NICE-Issues-Tec...
Pertuzumab, with intravenous trastuzumab and chemotherapy, is recommended for the adjuvant treatment of HER2-positive early stage breast cancer in adults, only if:
- they have lymph node-positive disease
- the company provides it according to the commercial arrangement.
I do not have lymph node-positive disease and am receiving Herceptin only at this point.0 -
I was ER/PR negative. But HER2+. In 2012 my oncologist recommended TCHP (Herceptin AND Perjeta) for the 1st 6 rounds. Then H&P for the rest of a year. The Perjeta was fairly new & I dropped after 6 infusions due to the diarrhea.
Edited to say - I think you should take it if you can. My experience was based solely on the HER2 positive diagnosis.
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Guys, the main point is that every situation is individual, and it has to be assessed as such. Like, for example, you have stage1 disease with tumor <1cm, no LN involvement, G1/G2, low ki67, then you can go with surgery only and forget it, but boy oh boy... if you are of higher stage, G2/G3, high ki67... not to take Perjeta, if it can be obtained in addition to Herceptin, is nuts. Her2+ in most cases is so aggressive that no one knows for sure that you do not have it on cell-micro-level in your LN/elsewhere, so not to take 17 rounds of this pretty-easy to tolerate drug if you can is not wise. Plenty of people in these forums who were LN negative and stage I/II are stage IV. I think many early-stagers underestimate the seriousness of their situation.
MochiPie, I am not goint to argue about NICE's cost/benefit considerations but NICE is just one national body - ESMO (European Sociaty of Clinical Oncology) guidelines give right of choice to double blockade for HER2+ enriched sub-type. I am actually quite surprised we discuss here "de-escalation" of biological therapy that is usually easy to tolerate and brings benefits:) If only people had this luxury 10 years ago:) Please, do not misunderstand me, if you are not willing to take adjuvant Perjeta, no one can make you do that.
Saulius
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I am on neoadjuvent TCHP. In the US, the manufacturer of Perjeta, Genentech, has a copay assistance program which will cover up to 25k of cost for a year for patients with private health insurance. Because of this, I was able to meet all my out of pocket cancer related cost and not have to pay a penny more until next year.
If you cannot tolerate Perjeta due to dhiarrhea, they also recently established a trial for patients experiencing that symptom.
In my case, I have one lymph node positive in my clinical diagnosis, which is why it was added to my treatment.
Perjeta out of pocket in the US is quite expensive. My insurance provider listed it as 24k without insurance. With insurance it's down to 16k, which is what the hospital will charge my insurer as a pre set contracted maximum amount.
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