TRIPLE POSITIVE GROUP
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I have been taking Arimidex and Nerlynx concurrently. I doubt your MO would put you on Nerlynx after Kadcyla. Nerlynx was approved before Kadcyla on some dubious data and was nowhere near as effective in its phase III trial.
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Hapa,
Thanks for the info!
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Hi, new here and newly diagnosed. Starting chemo next week. Confused about a few things. 1. I really don’t know what stage I am because I have multiple tumors in the left breast and an area that showed non mass enhancement on MRI. One tumor was 1.8 cm and one was 1.2 Cm there “might be 2 more 1 cm“ ones and a larger area of the non mass enhancement. Maybe multi focal or multi centric. This worries me.
2. Lymph node involvement.... nothing shows up on CT, MRI or PET but don’t we have to wait for surgery to know? And if we do neo-adjuvant then how will we ever know?
3. One of the questions asked was if the cancer was in our vascular system? Is that just mean was our cancer markers high in the blood tests we got?
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Welcome to the board. Have you met with an MO yet? Most of these questions are probably best answered by your MO.
For #2 i asked an MO that and he basically said if there's no cancer post neoadjuvant therapy it counts as no lymph nodes involved (provided all others tests pre-chemo showed no involvement)
#3 should tell you on you biopsy. Mine was on the biopsy done for the microcalcifications.
Hopefully someone else can help you out with the rest. My doctor told me final staging is done during the surgery which is a little frustrating to me.
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JP47 There are two types of staging, clinical (based on what is known from biopsy and scans) and pathological (the final call, based on what is actually found surgically). If your MO staged you at 1b (as listed on your stats), then that would be your clinical stage. My understanding is even with (potentially) multiple tumors, sizing is based solely on the largest diameter of the largest tumor. Is it possible there are mets in lymph nodes not yet known/ too small to show in scans? Yes, and that's part of why pathological staging is the final call. Scans can prove murky in terms of actual dimensions/ #s of tumors, but that's the best we can know until surgery, which will further determine actual tumor size and status of lymphovascular invasion.
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Ok thank you. So lymphovascular is the same thing? Not separate? So we really don’t know until the pathological surgery point then?
The surgeon told me that the PCR is no cancer remaining after the neoadjuvent, but not to worry if there was some because they would take it out with surgery.I’m reading that if you are a PCR (60% of people are), and you follow the normal regimen of Herceptin follow up with the hormone blocking agents.... the chances of “cure” (at least for a 5year rate) are 92-95%. Is that what you guys understand too? I guess my question is.... do we know the stats of you are NOT a PCR? Assuming it depends on how much cancer was left and where. And what follow up drugs you took after.
This is so much to take in.
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"So lymphovascular is the same thing? Not separate?"
Not the same as Lymph Node Involvement
"Vascular or lymphatic system invasion happens when breast cancer cells break into the blood vessels or lymph channels. This increases the risk of the cancer traveling outside the breast or coming back in the future. Doctors can recommend treatments to help reduce this risk.
Your pathology report will say "present" if there is evidence of vascular or lymphatic system invasion. If there is no invasion, your report will say "absent." Lymphatic invasion is different from lymph node involvement. The lymph channels and lymph nodes are part of the same system, but they are looked at and reported separately.'
https://www.breastcancer.org/symptoms/diagnosis/va...
https://www.breastcancer.org/symptoms/diagnosis/ly...
" I'm reading that if you are a PCR (60% of people are), and you follow the normal regimen of Herceptin follow up with the hormone blocking agents.... the chances of "cure" (at least for a 5year rate) are 92-95%. Is that what you guys understand too? I guess my question is.... do we know the stats of you are NOT a PCR? Assuming it depends on how much cancer was left and where. And what follow up drugs you took after."
I was told my 5 year OS rate was 98% with TCHP but, my prognosis is different so I would ask your MO.
There's also post surgery treatments (14 Cycles of Kadcycla) if you don't have a PCR.
The only thing I know about PCR is that if you're in that bucket it reduces your recurance risk but, i don't know by how much for Triple+. Sadly, we are quite often left in limbo on these things.
https://ascopost.com/News/59546
- Patients with breast cancer who had a pathologic complete response were 69% less likely to have disease recurrence compared with those who did not have a pathologic complete response. The relationship was strongest among patients with triple-negative or HER2-positive breast cancer with a pathologic complete response, where such patients were 82% and 68% less likely, respectively, to have a disease recurrence.
- Patients with hormone receptor–positive breast cancer who had a pathologic complete response had a trend toward lower risk for recurrence compared with those without a pathologic complete response, but the data were not statistically significant.
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JP47 I know it's frustrating, but yes, besides any genetic testing, you won't know more than what you know now, until surgery (besides any future scans looking for changes from chemo response or disease progression, if applicable). Scans are limited in what they can "see" and often can't detect smaller tumors (of a few mm) and cannot detect lymohovascular micromets (the vessels of blood and or lymph), and all of these things determine accurate staging and thus statistical odds of recurrence and death.
Being stage 1 wiith small tumors and no lymph involvement gives you really good odds, even without PcR. If it helps you to compare and contrast, my clinical staging was an estimated 3a, with an almost 6 cm main tumor and multiple palpable lymph nodes (the exact # unknown but 1 confirmed during biopsy, and my largest lymph node was larger than your largest main tumor). Every scan gave me a different tumor size or node #, at one point they said I had a 5 cm tumor with smaller satellite tumors around it. We'll never know exactly what was going on at that point because I had neoadjuvant TCHP, which gave me a response my MO called "very good", but not PcR. There was lots of cancer left in my opinion- my main IDC tumor still measured 4cm (but "was positive for signs of response"), with areas of DCIS and 2 positive nodes, which makes me pathological stage 2b. My MO said without Kadcycla I had 23% chance of recurrence within 3 years (aka 77% chance of disease free survival in 3 years), but a year of Kadcyla would shave those odds of recurrence in half. So (if I'm able to finish treatment, which I'll start once I'm done with radiation) I'm looking at a 88% of disease free survival, with a large tumor and positive nodes with no PcR.
My MO also said
that being HER2+ means it's more likely to come back within the next several years, but LESS likely than hormone positive HER2 negative cancer to come back after that, at say, the 10 or 15 year point. Note that there is NO "cure"; nothing will make even the smallest case of DCIS 100% likely to never come back, and all we have are statistics for what is likely but not guaranteed in each case.0 -
"My MO also said that being HER2+ means it's more likely to come back within the next several years, but LESS likely than hormone positive HER2 negative cancer to come back after that, at say, the 10 or 15 year point."
This is on my list of questions to my MO next time I see him. Was supposed to be this week but, they switched me to the NP without telling me.swear we get lost in the discussion.
I think the clinical vs pathology/surgery staging is confusing to those of us doing Neoadjuvant. I know i asked both my BS and MO about it because it confused me.
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Morrigan- staging status is definitely confusing and frustrating, esp when you're newly diagnosed. It gets more confusing when neoadjuvant chemo is in the picture- if a person has tumors and positive nodes but achieves PcR with no cancer found at surgery, what is pathological staging then?? It gets complex, but at the end of the day the PURPOSE of staging is what's really important (and different types of staging models can help with this). Here's a good article explaining that dynamic a little better
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC44417...
My first try wouldn't hyperlink, hope this one works!
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thanks for the link, that was a very good read.
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Also, this Neoadjuvant therapy outcome calculator may be of help
http://www3.mdanderson.org/app/medcalc/index.cfm?p...
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ohh, I love Calculators 😁. Will have to remember once I get the pathology staging post surgery
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Hi everyone, while reading a different thread I heard about the triple positive group. Well that’s me! Was diagnosed just about two weeks ago and I’m scheduled for my port placement Monday and TCHP infusion Tuesday. I’m so thankful I joined this community
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Hi Cassandra, and welcome to the club no one wanted to join!
For the port, I got a seatbelt cushion off amazon and am glad I did. Was (actually still is, since i have a bony chest and have another 9 months of Kadcyla infusions) great for both the port and coming home after surgery (though I was nie and numb and flying high for that!)
Get some Emla cream for the infusion Tuesday -- you will still be pretty darn sore after port placement and the Emla helps. At this point I usually forget it before infusions and the poke isn't bad enough to want lidocaine but when the port is new it is more tender.
Best of luck!
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Thank you for the info. My path report didn't say anything about "present" or "absent" so I guess I don't know. My left breast also had multiple tumors and a large area of DCIS...likely to be 5-6cm. We just dont know. But knowing this...maybe pending lymp nodes after surgery...I might ask for the Kadcyla. Lets hope both of us can get through the treatment protocol we are on (me just about to start).
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THanks!
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JP47 if you have any residual cancer at surgery I'm sure your MO will recommend Kadcyla- it's becoming the new standard of care in such cases since 2019.
Some people do pretty well on TCHP and others have a harder time- I was in the latter category! Perjeta gave me awful nonstop diarrhea despite immodium, so after 4 rounds my MO pulled that part, but said even that amount did a lot of good. I highly recommend using glutamine powder to prevent neuropathy and ease mouth pain- it's been proven in clinical trials to do so
https://clincancerres.aacrjournals.org/content/7/5...
I started to develop neuropathy after my first chemo, but taking 10g of glutamine 3x a day in some juice (for a week, starting the day before chemo) prevented it entirely for the most part (with a few days of tingles towards the end, when I was sometimes forgetting to take all 3 doses) I didn't ice anything except my mouth (sucked on ice chips during the taxotere and carboplatin portion), but some choose to ice hands and feet.
If you haven't already done so, join the March 2020 chemo group; it can be very helpful to have the support of people going thru it at the same time! Good luck, I hope TCHP is easy on you.
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JP47, hi!
I did fine with TCHP. HeartShapedBox is right though, get out in front of the diarrhea and stay hydrated! I was able to work (desk job) through TCHP. The worst of my side effects was the loss of taste buds for about 10 days. It made wanting to eat and drink a challenge. Dasani bottled water was the only water that tasted good to me.
The port will be your best friend!
I wish you loads of luck
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I'm currently on TCHP (middle of round 2). Taste buds go wacky but, water still tastes good. Immodium doesn't do a lot for me I just living with it. I do ice hands/feet/mouth but, will add the glutamine powder didn't hear of it before. I haven't gotten mouth sores but, have had Thrush both times. They gave me a mouth rinse and now lozenges and they work.
For me the biggest issue is the Thrush and taste buds but, everything is manageable.
I agree with others join the March 2020 Chemo group, it really helps talking to people going through it same as you (even If they're on a different treatment)
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ok thank you all so much 💛
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YMMV on the diarrhea with TCHP -- I was warned to expect it but ended up with HORRIBLE constipation and ALL the consequences of that, and am still dealing with the after effects. Even when I switched to just HP it was still constipation!
I gotta be different I guess
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Friends, please take care of yourselves. If nothing else, the last couple of years has taught me how very precious life is
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rlmessy — Hi. I'm new here and trying to read as much as I can. I've read about your problems with Herceptin. Hope you're doing better now.
I'm About to get a port and have first Herceptin. I've not had any chemo or pills before. I have some severe allergies and I'm very frightened. CT contrast — first time I passed out and went into respiratory failure.
Like you, a dear friend with a rare cancer had anaphylactic reaction to his first monoclonal antibody infusion. Herceptin also is a monoclonal antibody. His was made from a mouse protein. Do you know what Herceptin is made from?
No other choices for him. What made it possible was the premeds and to slow down the infusion rate to 25 ml per hour. Since the amount for him was 750 ml, it took 30 hours to infuse. Infusion clinics are open only eight hours, so every three weeks he was hospitalized for the infusion.
I've read the first Herceptin infusion is 90 minutes. How much Herceptin is in it? Is the amount infused the first time the same each time after?
Thank you and I welcome feedback from everybody else about port placement and Herceptin.
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rjles I'm new here and reading to catch up. I'm similar to you — at Dx I'd already had a hysterectomy and was taking estriodol. Never had hot flashes, but the estriodol got rid of the awful night sweats. Of course they made me stop taking it and the extreme night sweats started again. MO said take Venlafaxine (generic for Effexor) — will fix them. I replied "lies and deception." But I did try and was shocked when the night sweats disappeared completely with 37.5 mg twice a day. I do not take anything extended release so it is just the regular pills.
I had to fight to get an estrogen level blood test ordered. Makes no sense to me; they want us to take hormone blocking medicine but don't monitor to see if the medicine is working.
Does anybody's MO test estrogen levels? Does anybody know what is considered a successful estrogen suppression level?
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Venlafaxine took care of my hot flashes - what a surprise when they started at age 70.
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Re: Herceptin, first infusion usually 90 minutes but typically 30 minutes after that. Amount will always be the same when you're getting it weekly. You'll have height/weight measured and then they calculate dosage. When you move to Herceptin only ever three weeks it's triple the dose.
Re: testing estrogen levels, I've never read about that happening. The meds work.
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By His Grace,
I started Ovulation Suppresion + AI (aromasin) when I was 47, four years before the average age of menopause (51). When I turned 51, my MO had me go on an OS vacation, and she tested my estrogen levels then. They were still premenopausal, so I went back on the OS. Sigh.
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Hello everyone,
I am a newly diagnosed and was told to look up this Triple Positive Group and that's me! I have already had a lumpectomy, lymph node removal, port placement, and had the first round of chemo (AC) two weeks ago (3/4/2020). I am due to have my second chemo infusion on this upcoming Wednesday. As a triple positive person, I honestly don't know all the exact details pertaining to the DX but I am currently trying to read up on as much articles as I can to be better informed. All of this has been a world wind and I'm simply just beginning to play catch up so to speak. The abundance of information can be overwhelming at times and googling is NOT always a good thing when reading statistics. So I basically KEEP my TRUST and FAITH in God, have been more aware about making lifestyle changes (diet & exercise), and remaining positive throughout this experience. I look forward to connecting with everyone and I hope that everyone have a nice day.
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angel eyes - you should also check out the March Chemo board, so you can talk to people that are going through chemo at the same time as you
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