TRIPLE POSITIVE GROUP
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Thank Vicky. I feel the stretching through Yoga helped me so very much....I hated the Yoga with a passion but the 30 minutes made a great deal of difference in my flexibility. I look forward to it now!
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HapB,
It sounds to me like early stage HER2+ breast cancer patients will see their treatment regimen shortened, which is a good thing. Of course, the study is only five years out, but if it holds up, that will be awesome news.
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Oh god, I hope they put me on a six month course instead of a year. But I suppose they didn't study it along with Perjeta, which I'll also be getting. So probably not, and even if they do I'll still have this horrible knob sticking out of my chest to get the Perjeta. Did people who had neoadjuant chemo do the H+P during surgery and radiation, or did the infusions stop for a couple months?
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I'm resuming today, 8 weeks after surgery. It was a nice break! I was on the borderline of needing radiation, it's yet to be determined. The surgery was the easiest piece of the journey so far. I'm so thankful for that. My new implants are hard and awkward but at least I can soak in a tub, work out again and I'm back to work!!! Chemo was very difficult for me but I had fantastic results so it was well worth the trouble!!! I'm sitting in the chair receiving Herceptin and Perjetta, thanking God it's almost over.......👏❤️😊
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Ingerp - I did chemo on Fridays. My experience was that Friday was a long day in the chair! On Saturday and Sunday I felt really good - the steroids were wonderful. By Sunday night I was feeling punky. Monday was my bad day. Then Tuesday I would start to feel better, by Friday I felt normal. And then the cycle started all over again. But Friday was a quiet day at work ( I worked from the infusion chair at the hospital - they had wifi - most people took fridays in the summer off - so it was good for me that it was a light work day) and I wanted to be ok to do stuff with the kids on weekends. Towards the end of my treatment - I stopped working on Mondays - I was having trouble on Mondays and hurt everywhere. I hope my experience helps -I know that everyone was different - but that was my experience. Minus the two weeks I had allergic reactions - and I won't talk about that because almost no one has one and I don't want to spook you. I'm unique ;-)
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Tresjoli—I really appreciate your sharing. I’ve read so much on BCO and only one woman said days 1 and 2 were her worst. Most seem to have a pattern like yours, with 3 and 4 being their worst. Fingers crossed I follow your pattern. After #1 I think I’ll only be there for about three hours. Tomorrow I meet with my MO at 9:40 and am then scheduled for “220 minutes”—is that how most infusion centers do it? I have a teleconference scheduled at 2:00 but have already warned my boss I may or may not be on it. I am kind of curious—seems like some women are super tired and others are a little jacked from the steroids. I guess I’ll know in 24 hours—aiyiyi!
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I'm sure all infusion centers are different. A half a day sounds about right for the first go. Check to see if you hospital has Wi-Fi. Most do. That way you can take the call from the chair if you run long...Hugs - I will be thinking about you tomorrow! I was TOTALLY jacked on the steroids. Made for a good weekend! :-)
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Checking in with my dear positive ladies,
hapa, I just had my first H+P infusion yesterday, 3 weeks after surgery. Will start radiation therapy next week, i.e. 4 weeks after surgery.
ingerp, congratulations on that graduation and thanks for sharing the picture. You look great.
I wanted to commiserate on the misdiagnosed lady, EmbracingToday. I would be furious too and would definitely write some letters. Sorry you are going through this. Changing hospital because of this sounds very traumatic and upsetting. Let us know how they respond.
Suburbs, thinking of you and sending positive vibes for a quick recovery to kick that infection out for good.
I finally got my complete post-surgery pathology report.
At diagnosis, before chemo and surgery, my breast tumor was measured over the skin, with measuring tape, as measuring 3.5 cm (nothing other than some "distorsion" appeared in scans), palpable and solid, and the biopsy came as IDC, grade 3, moderate to poorly differentiated. After chemo, it was not palpable anymore, and the path report after surgery says that the IDC was 2.5 cm in greatest dimension, grade 2, moderately differentiated. It says "dense fibrotic area, displaying scattered tiny tumor nests", it also says "single focus of invasive carcinoma".
Re lymph nodes, at diagnosis, before chemo and surgery, I had two adjacent lymph nodes that tested posiitve for metastatic carcinoma, both around 1cm, palpable, one of them with "focal extranodal extension" according to the biopsy path report. After chemo, those lymph nodes were not palpable anymore; six lymph nodes were removed during surgery, two tested positive for metastatic carcinoma with macrometastases between 2mm and 6mm, and "extranodal extension". The other four nodes were clean: no macrometastases, micrometastases nor isolated tumor cells.
Stage remains the same, T2N1M0, but now grade 2 instead of 3.
Oncologist explained that both him and the surgeon were hoping for a better response for me, which is why the surgeon looked gloomy when he gave the news. This was more cancer that they expected to find, given the palpations and my clean post-chemo, pre-surgery MRI. He thinks that at the beginning I probably had more cancer than they could feel, probably a bigger mass, and probably more than 2 nodes involved, but he is still optimistic re my prognosis and sees this as a good chemo response. Mastectomy (rather than lumpectomy) was, in retrospect, the right call for me. And I now fall in a grey area for radiation treatment (2 positive nodes when the cut off for radiation is 3 or more), but the decision is that I will get it in the end.
Therefore, the plan for my future includes 6 weeks of radiation, and H+P until I complete one year, plus hormonal therapy. I will consult with gyn next week to discuss oophorectomy.
Does this add up? I am TERRIFIED about the positive nodes and "extranodal extension".
Love and peace,
LaughingGull
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Tj—I was told twice they have “really good” WiFi. :-) I have one retirement party and one graduation party on Saturday—hope I’m gonna go in like gangbusters!
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Hi all, better late than never, sorry I did not check in, I have been sort of down, procrastinating, it is hard to explain, I am not usually like this at all(( I am reading everything you posted since my last post in March, still have April and May to read. You all are amazing, I am so happy I got to know you all)) oxoxoxo
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Hapa- I am skinny and bony, and the port has run a gamut between extremely painful (right after placement) to somewhat tolerable (now, and when I am resting). Most of the time I find it to be really aggravating, both the port itself, which gets in the way of every backpack strap I own, and the catheter up my neck, which sends little pain spasms all the way to my ears. I am going to get the damn thing removed as soon as I can after my final TPH, which is coming up on May 30, woo hoo. Will get herceptin and perjeta via IV as my veins are fine.
And I will agree with most of the other ladies: my infusion day (#1) I feel fine, although was a little dizzy during the AC cycle. Day #2 I am so jacked up on the steroids that I get about 10,000 things done, and Day #3 is my worst- nausea with the AC and achy, pre-flu feeling with the TPH. I've taken Neulasta every infusion so far and I am certain that it contributes to the achy-ness. With AC I was back to 100% by day 5, but the TPH effects are lower grade and last almost a week, harrumph.
So glad when this will be over, although then I get 30 radiation days with a drive of 1.5 hours to get there (and back, of course). One more GREAT use for the Meal Train- for rides/ drivers/ companions for the trips. Then H/ P til next March, and an AI afterwards for I don't know how long. I am not sure I can deal with the side effects for minimal gain of the Nerlynx. My MO mentioned it last week when I asked about recurrence, but he didn't endorse it wholeheartedly, especially now that the Perjeta is added to the Herceptin. At Stage 3C I am going to take HP for a year though.
Happy spring everyone!
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LaughingGull - My diagnosis is similar to yours. Neoadjuvant chemo finished a month ago and I am choosing to have a mastectomy which is scheduled for next Friday. My doctors think my follow up will likely include radiation, Herceptin for a year (not sure about P), and hormone therapy, so it will be very similar. Thinking of you and hoping you get good results from radiation and hormone treatment. Take care.
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Homemadesalsa: wow, your port experience sounds like an ordeal. Hopefully it will be out soon. I don't know what is common or normal with a chemo port, but my experience is very different. Other than soreness for the few days after port placement, I rarely notice it's there. My port is placed in the inner side of my healthy breast and does not interfere with any straps or clothing, and I am also thin and my port is a double one. Never had pain from the catheter either. I have been swimming, running, skating and what not with it, always comfortable. Only change is that I now wear padded sports bra all the time, including when I sleep, to conceal the port when I am dressed, and to make sure it doesnt bother me if I sleep on my tummy. The only time it bothered was after the last chemo because I got a skin infection on the port and had to take an antibiotic for a week or so. Did you get checked about those pains, and what did they tell you?
TriplePHtown, I am with you in the journey, sister! Good luck with the mastectomy. For me, the mastectomy was easier than I expected. A couple of days of pain only. Will you get tissue expander? No lymph node dissection? Keep us posted.
Peace and love. Enjoy your Friday, everyone!
LaughingGull
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Thanks for the empathy, Laughing Gull. More than I ever got from my whole MO team. They looked at me like I am crazy (which is true for pretty much all situations) and said "we've never heard anyone complain about this before." So I will put up with it for a few more weeks and get it out after next and FINAL TPH.
And my mastectomy was also very easy. The axillary nodes, however, not so much.
I'll ask my MOs about the 6-month Herceptin vs the 12-month trial. But I would put good $ on them looking sideways at it and saying, "no, we will stay with the 12-mo, which is what we have been doing."
Happy weekend, all!
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I'm going to ask about 6 month Herceptin too when the time comes. I don't need no heart failure!
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Homemadesalsa....to me this sounds like they should look into it. Maybe they did something wrong with the plumbing. Luckily it's just a few more weeks. I agree the axillary surgery it's a bigger deal than the mastectomy. Very annoying. Heading to physical therapy for it right now. Hang in there!
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For those who are wondering about the 6 versus 12 month Herceptin concept - don't expect your docs to go along at this point. This is an as of yet unpublished study - not arguing the validity - but these things take time to be incorporated into standard of care guidelines. My understanding is that this info will be presented at the ASCO conference in June, but there is still a road ahead before it will be accepted as recommended to all patients, if it ever does. What this info does do is reassure people who have had to discontinue Herceptin due to complications that they got enough of the drug to prevent recurrence.
cherry - hi! Good to see you, was a bit worried about your absence.
ingerp - great grad photo - congrats to your family!
For those with residual disease after neoadjuvent chemo, remember that the goal of systemic therapy is not to clear the cancer in the breast, or even the axillary nodes - that is removed surgically. It is done to keep errant cancer cells from setting up shop elsewhere. I know there are stats that correlate pathological response to DFS and OS but also remember that as TP patients, chemo is less likely to be effective if we are highly ER+ - and we never know which aspect is driving our individual cancers - the ER+ or the Her2+. Complete pathological response is not expected in TP patients, great when it happens, but definitely not the norm. This is why anti-hormonal and continued targeted therapy is important after finishing chemo. Hang in there!
I had surgery prior to chemo and Herceptin - I was treated before Perjeta was approved and neoadjuvent systemic was done usually only to shrink a tumor for better surgical margins. I was fortunate to have my port placed at the time of mastectomy - using the mastectomy flap so no need for a separate incision to place it. It was a super tiny subclavian port up by the hollow of my throat that you could not see unless I pointed it out, even though I am petite with a pretty bony upper chest. I kept it for 6 years, the first two of which were at the request of my oncologist in case I needed it due to recurrence. After that I got sidetracked with other recon issues and more surgery, then a recurrence scare in 2016 so it was left in until about 18 months ago. I liked having it and was irrationally superstitious about removing it - but so far, so good, lol!
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Always appreciate your perspective, SpecialK. I just got home from #1 of H/T--I'm curious where the medical community will be in November, when I'm six months into the H.
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cherry! Yay! I was getting really worried!
Ingerp let us know how things went today!
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ingerp - the medical community usually doesn't move that fast in adopting change to a regimen that has a proven track record. This was a study funded by the British government - and they are the entity who pays for medical care in the UK so have a vested interest in shortening the time period that patients receive Herceptin, and while there is potential for fewer side effects for patients with same efficacy as longer treatment, it also saves money for the payer. This is not to say the study is not valid - but, this is one study which has not been published yet or presented publicly - all we have seen so far is the press release. I would not anticipate any changes for anyone currently in treatment in the US, as far as adoption by the NCCN or other bodies that govern treatment recommendations. The study is potentially good news for future patients, and this is a frustration for anyone diagnosed with cancer, or any other serious disease. Waiting for new treatments to be approved or adopted while you are making decisions is sadly commonplace - as I mentioned in my post above - I would have qualified for Perjeta based on both tumor size and nodal status, and would have welcomed it, but it had not yet been approved for early stage use at the time I was diagnosed, even though it was known about since it was currently being used for stage IV patients.
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Kae and LaughingGull, thanks for thinking of me. I'm going to beat back this demon infection.
EmbracingToday, sending support. I can't add anything to what Caoachvicky and ElaineTherese suggested. It's awful that a significant mistake was made. Thankfully, it was discovered!
YYC_Girl, we are warned about final surgical pathology being another measure, but after chemo and then surgery, who could imagine anything more. But, you're not at the finish line and that second half of your treatment plan needs to get working and do it's job! Hang in there.
Kim_Cee, your numbers can bounce back. Have you asked about cardio rehab therapy? Please keep us posted.
1cupcake2018, you are halfway there! Congratulations.
Ingerp, great photo of a milestone day. Good luck starting chemo. You have great hair!
cherry-sw, thanks for checking in. Please post if you're feeling rotten as we all either are or have been there. No judgement zone here!
Homemadesalsa, I make a mean home made salsa so I hope you post your recipe some time. In the meantime, you might try Claritin with the neulasta. Ask your MO. Some take it to avoid the pain side effect. Nerlynx down the road is not too awful. I am on month three and doing ok.
Have a good weekend everybody. I'll be up early to watch the pomp and circumstance of the royal wedding. I love a good fairy tale. : )
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LaughingGull - I will get tissue expanders and am trying to decide what to do with lymph nodes. They know 1 node was positive prior to chemo and are hoping it has had a pcr. I could tell them prior to surgery that if it has a pcr, they could do a targeted node surgery where they follow dye and take out the formerly positive node and others that absorb dye. Or, I can just say go in and do ALND. The problem with the targeted way is that there is a chance for false negatives. That rate has been higher in studies than researchers hoped for ( I can't remember where I found that or exact numbers.) Targeted choice would mean less nodes removed so maybe reduced lymphadema chance, but increased risk that they missed some nodes. If I do ALND, lymphadema chance goes up, but more nodes are removed that could be bad. My tumor cells were Grade 3 so I am a bit scared to take the targeted risk, but am also scared of lymphadema. Driving myself crazy with choices...I need to play that song "Don't worry, be happy!" Wishing you a speedy recovery! 🍀
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Hey all—I'm feeling good. No issues during transfusion—in fact I sat in on a teleconference that started right before I left the infusion center. When that was over I went to the gym—I think that was a really good idea. Someone on some thread (I follow so many!) said her biggest SEs were gas and indigestion and I did have what felt like gas pains moving around. I really think the little bit of yoga I did (which I have not done since before surgery!) helped. I feel like I'm eating like a horse—came home and ate the leftover bacon cheeseburger and fries from last night. Oops.
I'm sure this is a bit of a steroid high. I took a Zofran when I got home and will take a Compazine before bed, really for the drowsiness. No hints of nausea but I think I'll take the anti-nausea meds for a few days after tx.
SpeciaK—that's the answer I was expecting. I will talk to my MO at some point but H every three weeks for the full twelve months doesn't seem all that bad.
I might put one of my tiaras on in the morning to watch the festivities. Not sure I'll be sleeping much tonight, although maybe? I'm sure there will be tons of replays through the day.
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PHARE trial found a difference in disease free survival to be 2.7% lower in the 6 month group and was deemed inferior to 12 months. But I agree that it's still such a close percent that there likely is a shorter duration that works and I think women who stop herceptin early because of side effects should find some hope in it.
"After 3·5 years follow-up, we failed to show that 6 months of treatment with trastuzumab was non-inferior to 12 months of trastuzumab. Despite the higher rates of cardiac events, 12 months of adjuvant trastuzmab should remain the standard of care."
https://www.ncbi.nlm.nih.gov/pubmed/237641810 -
hap - I think it is also important to parse the phrase "early stage" as it encompasses a fairly wide range all the way from stage 1A to 3A, and a variation in tumor size and nodal status. It is important to look at the population enrolled in these trials and then consider one's own clinical or surgical pathology compared to the trial enrollees. Where you fall on the continuum of staging may influence both patient and oncologist in determining duration of systemic treatment choices. It is important to note that in the Persephone trial 93% of the trial enrollees received anthracycline chemo so this was not a true test of cardiotoxicity caused by Herceptin. The combination of anthracyclines and Herceptin make it very difficult to determine which agent is causing the cardiac issue, and taxane based chemo combined with Herceptin seems to have less of a cardiac impact. My oncologist does not use AC-TH(P) routinely for this reason, he instead uses TCH(P).
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hap - Second sentence of the results section of the link.
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hap - I am not sure what you mean by subgroup. I was not discussing DFS and OS between regimens, I was discussing cardiac toxicity. Patients who have received both anthracycline chemo regimens - usually AC-TH(P), have a greater incidence of cardiotoxic incidents, than those patients who receive taxane based chemos, with no anthracycline used, usually TCH(P). The BCIRG006 trial showed the efficacy of Taxotere, Carboplatin and Herceptin to be comparable to AC-TH, with less cardiotoxicity. Initially Herceptin trials only involved metastatic patients who received it as long as it kept them alive. Determining a course of treatment for non-metastatic patients involved trying different time lengths of administration to determine which one achieved success in the shortest period of time. The HERA trial actually involved arms of one year and two years, with the control group of no Herceptin administration added to chemo. This study started in 2001, when use of Herceptin for early stage breast cancer was still five years away, and patients were followed for 10 years. Hera showed that 2 years offered no advantage to 1 year, but 1 year offered significant advantage over chemo only with no Herceptin. As you have posted about, there have been some other shorter course non-inferiority studies done, but the conclusion has been that the 12 month Herceptin treatment duration should remain the standard of care offered to Her2+ early stage patients. The advent of trials looking at shorter duration, such as PERSEPHONE open the door to discussion regarding which patients need escalation of treatment, and which need de-escalation. I would wager that 6 months of Herceptin will not be a one-size fits all, but could be an approach that works for those with earlier stage disease, much as the Dana Farber study showed single agent Taxol and Herceptin was enough for smaller node negative tumors, a shorter course of Herceptin may be applicable for those with co-morbidities such as age, existing cardiac risk, and less aggressive disease.
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hap - I don't think you will find that level of breakout in many trials - sometimes you see hormone receptor delineation because both negative and positive can be Her2+, usually you see some age brackets and grade or tumor size. You likely won't see comorbidity info, but sometimes if you look at the original trial inclusion and exclusion criteria you can assume anyone included met the minimums. In the anti-Her2+vaccine trial I participated in I had to bring records for review and be examined by the sponsoring physicians before receiving an acceptance. As far as cardiac impact after treatment, I believe there is a drop off at the five year point after which there is little evidence of continued risk, and with the 11 year follow up from one of the initial large trials this has been firmly established. Of course, data gathered includes patients treated with chemo regimens that include inherent cardiac risk also
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It is important to denote the difference between a trial for FDA approval, mainly undertaken by drug companies for approval to bring a drug to market, and a study of an already approved drug. They each have a different purpose and focus. The FDA parameters for the different phases of trial for approval are set out for the drug company to follow, whereas a study of an already approved drug by a group, university, government entity, etc. has a different rationale and endpoint and so may highlight or examine areas that are different from what a drug company does in pursuit of bringing a drug to market that is useful for a patient group.
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Clinical trials, particularly with the intent to bring a drug to the market through FDA approval process, are interventional - meaning that what is being researched is a treatment method. The FDA process involves phases I, II and III, and IV - each with a specific rigor - phase I is safety and what constitutes a safe dose - and this can involve patients with disease and without. Phase II determines efficacy and side effects, phase III broadens the number of trial participants and looks again at safety, and further measures efficacy and side effects in that larger population, phase IV looks at post treatment, but sometimes drugs are fast-tracked after phase III and brought to the market - I feel this is true of drugs that are potential life saving drugs like Herceptin, which was fast-tracked in 1998. The full FDA approval process averages about 11 years from start to finish. Studies, on the other hand, are generally observational of the patients who have received the approved treatment. They can be undertaken by groups with an interest, like oncology practices or societies devoted to particular illnesses, governments - like the PERSEPHONE study was, groups within government like the NIH, or universities who wish to further understand a particular treatment method.
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