Neoadjuvant TCHP - Post Results Here
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LTWJ,
Sounds like things are good and I am glad to hear this.
I assume you are receiving a Herceptin infusion every three weeks? How is that? Do you feel less tired?
GIVEITYOURALL
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First post! It's a long one!
I was diagnosed in Dec 28 2017 with IDC, grade 3, HER2+, HR- breast cancer following mammogram, ultrasound and core needle biopsy. At that time the radiologist only shared it was "grade 3" and "negative" which meant it was aggressive (and only because we asked... I honestly think he was trying to tell as little detail as possible. The appointment with treatment surgeon was not for 2 1/2 weeks.) I had an MRI the following day and then waited nearly 3 weeks to see treatment doctor; I could tell it was getting worse the entire time I was waiting.
At that appointment I learned the gory details: the mass measured 9 CM on the MRI, grade 3 (aggressive), HR- (aggressive), HER2+ (aggressive). I was not a candidate for immediate surgery (obvious to me now, but not then). Surgeon examined me and estimated the mass to be at that time 14 CM (50% increase in about 19 days). He referred me to a medical oncologist who I met later that day. The medical oncologist shared the good news of herceptin & perjeta. His clinical exam estimate was 12 CM. It had gotten measurably worse essentially affecting all the ductal tissue, but was not attached to chest wall and had not crept into skin yet (thank God!). I had port placed the following day. On Friday that same week, I had an axillary node biopsy (positive) and chemo teach. Started TCHP protocol the following Monday (6 days from my initial treatment consults). My PET scan was the following day and confirmed only the right side and those lymph node(s) were affected. Ovaries showed some contrast activity but they expected it was physiological. Had followup abdominal US to confirm that.
I could tell the area was improving by the first week out from treatment 1. By the end of the 2nd week, my nipple (which had shown changes by the time I met my treatment doctors) looked almost normal. At my checkup pre-treatment, the MO (who said he doesn't usually do physical exam on first visit, but I told him I could tell it was a lot better and he was curious) did physical exam said it felt like the mass was around 2" and the lymph node was no longer palpable. He rechecked his notes where he had noted it was around 1 inch at my original exam!!!!
I had a reaction to Taxotere at treatment 2. I think they adjusted the dose down to 80% for subsequent doses (more on that later). By the end of this treatment cycle I could not feel the thing anymore. My right breast was now noticeably smaller than the left (the opposite has been true my entire adult life). I saw the surgeon for a followup on the day after Treatment 3 and he could no longer feel the mass or the lymph nodes and noted a clinical complete response in my chart. I got negative genetic test back the day after that exam.
I had an ultrasound following treatment 4. The tech did her thing and then said "let me take this to the doctor and see if he needs any more pictures". She came back and said "there's nothing to measure. It's amazing!" I had more signs of neuropathy during this cycle and felt really bad for a lot more days.
Treatment 5, with the good ultrasound and the more disruptive side effects during treatment 4, my MO adjusted my Carboplatin dose down by 30%. This is how I learned I was on a decreased dose of Taxotere (80%) for some time, because he said he was going to decrease my dose of both chemo drugs but they only adjusted the one due to the other being already reduced.
Treatment 6 was just THP, no Carboplatin at all or "chemo lite" he called it. He gave me the option of skipping this treatment but there was no way to move my surgery up, so I didn't want to take a chance on anything growing again. I had a presurgery MRI following treatment 6 and no disease was evident on the MRI. Surgery was scheduled for 1 month after final chemo treatment was administered.
Because there were abnormalities in all 4 quadrants and the original large size of the mass, I had right side mastectomy (simple) on June 4 with SNB (6 axillary, 1 intramamary). No cancer was found from in-surgery pathology. Subsequent pathology confirmed pathological complete response. I need to get a copy of that from the doctors and frame it. I have had 2 adjuvent treatments of Hercpetin + Perjeta (3rd is Monday) which will continue through the end of the year. Still fighting with insurance about paying for the Perjeta which is terrifying due to insane cost of that drug, but I am NED. I will start radiation therapy in a week and a half and then have reconstruction (probably) sometime down the road after recovering from radiation.
That's my story so far. I'll see If I can scrounge up records to add any more detail about imaging/diagnosis and such in the next few days.
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rgail - WOW - we've all been told that Herceptin and now Perjeta are game changers, but your story is such a positive result. Congrats.
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Rgail, I am so happy to “hear” or should I say “read” your outcome. That is absolutely amazing. Thank you for sharing your positive experience and I hope your health continues to soa.
GIVEITYOURALL
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rgail, When I began tchp treatments, the prior authorization for perjeta came through on the morning of first infusions. Talk about close call. I noticed that you don't mention side effects. Mine were pretty bad with the perjeta so I had the choice to stop after #2 infusion and I did. The anti-D meds didn't do diddly for me. However, my chemo nurse handed me a Perjeta coupon and I signed up online, but didn't end up having to use it.
As for insurance not wanting to pay for it, my team at the cancer clinic went to bat for me and was on the phone daily with BCBS about it. That was in July of 2017. You'd think that by now, things would improve. I'm rooting for you!
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RGAIL,
I read that u were having difficulty with Perjeta and your insurance. Please note that Genentech , the manufacturer of Perjeta, has a special patient assistance program. I believe it is also being sponsored by McKesson, a top five Forbe company. Anyway... Genentech , I believe, will offset $25,000 per year of your Perjeta costs. They ask that u chip in $5.00. That is right ...$5.00.
Ok? Hope that helps.
Giveityourall
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Thanks everyone!
The Perjeta was preauthorized by BCBS. That's right: they approved/preauthorized it and THEN, around the day after my second treatment, I got the EOB for the first treatment with a little footnote saying "Not Medically Necessary". The cancer center where I'm being treated insists it is their fight with the insurance because of that being the objection, which makes sense. It should be my doctor who decides if it's medically necessary or not, and as he's said a few times when I have talked to him "this is the FDA-approved treatment protocol! It's not even strange what we are giving you!" One fun week after I'd finished chemo, on a Tuesday I got the "Certification of Medical Necessity" letter for the adjuvant treatments, then the very next day got yet another EOB showing they hadn't paid (one of the neoadjuvant treatments) because it's "not medically necessary". The neoadjuvant use for advanced HER2+ has been FDA approved WAAYYY longer than the adjuvant setting.
As far as the side effects, I thank God I did not have too bad a go of it. The first round, I did not get Neulasta and spiked a fever w/very bad pain for about 3 days in the middle of week 2... had to get fluids and antibiotics and such. I found out at my checkup before the next treatment that insurance hadn't approved the Neulasta. My doctor made a judgment call that it was more important that I get going on treatment ASAP and they could handle it if I got a fever (which they did). I'm thankful he made that call because of the way it was growing. I got Neulasta for the remaining 5 chemo treatments.
I had NO nausea or vomiting, just heartburn which was mostly manageable with Tums or Tagamet/Pepsid. Gut disruption was *for sure* the most persistently obnoxious side effect and my gut has still not normalized; I would swing from one extreme to the other in terms of digestion and it's... after effects LOL. I had a little more than half of my hair fall out 2 weeks *to the day* after my first treatment (the rest just stopped growing and stayed buzz-cut-short). It's started growing again (and simultaneously falling out), but it's pretty thin, so I'm a little worried about the Taxotere. I was really tired, especially for the last three cycles. My skin got really, really dry and I had constant nose running/nosebleeds and eye twitching/watering. My fingernails now are a horror show but that didn't start manifesting until treatment 5 or so and they don't hurt, thankfully. I did have neuropathy symptoms that got a little more noticeable each cycle, which is ultimately why he started dialing back my doses when he was sure the cancer was responding so well. I haven't noticed a lot of numbness or tingling since chemo stopped, so I'm hopeful it won't be permanent. The eye twitching has mostly subsided but my sinuses are still not great (Herceptin, no doubt). I did not have the energy to exercise much, but i did manage to work bit during the non-treatment weeks. I do find myself noticeably more forgetful, my attention-span/concentration still suffers and I do still get tired more easily.
I was pretty careful about my diet; I don't know if that contributed to the relatively mild side effect experience. I cut caffeine and sugar altogether in the month or so between when I noticed the place and when I started treatment. I've stayed off the caffeine, except for what is in the occasional green tea. Once I started chemo, I was still pretty careful about how much sugar I was eating, but less fanatical, and just tried to make sure I was getting nutrient-dense, high-protein food if I could tolerate it. I did eat a LOT of baked potatoes which I usually avoid. I found it very hard to know what to eat for the digestion troubles. My doctor was fine with me continuing the vitamin/supplement protocol I put myself on pre-treatment (except for herbal things), but I ended up avoiding them on treatment week and then only managed to take them sporadically on the off weeks. I'm back on track with those now, unless the radiation oncologist insists I stop, but he hasn't talked about it yet and I'm not bringing it up.
Anyhow, I will take any prayers, positivity & pointers towards the peaceful end of this Perjeta/insurance fiasco. And will keep you guys posted when it get's resolved (...she says, with faith that it *will* be resolved!).
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Hello Hughope1 here, just read your post and I to just turned 60 a couple days ago. Heading to hospital today for port and start chemo tomorrow. Would like to know how you are doing? I was positive Her2 and estrogen. 6 rounds of chemo before any surgery to try and shrink tumor.
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Hello, Hughtope1! I am halfway through the same treatment you'll be getting. By all accounts, I'm doing really well but it's tough. You may want to read some of the threads in the Chemo section....generally there's one for those starting each month. I'm on the "starting Chemo June 2018" one. It will give you some idea what to expect. Don't get scared off, though, it's great to go through it with others at the same time. A positive thing for you: After 2 treatments of TCHP, my tumor shrunk from 5 cm to 2 and before my last treatment it was 1.5cm. So the treatment is amazingly effective, so try to keep your chin up, and don't go anywhere without nausea and diarrhea meds, Good luck!
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My wife is in the second treatment of TCHP and per the MO's check, she is doing very well. The MO mentioned before the neo-adjuvant chemotherapy that my wife is going to have a breast MRI at the end of 6 treatments, before that the MO is going to exam after each treatment. Should we ask the MO to order a MRI earlier (see, after the 3rd treatment) to "officially" assesses the progress?
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LilyCh - I don't think it's really necessary to get an MRI in the middle of treatment. And you will avoid the extra radiation. It's unlikely they'd stop/change the treatment in the middle of the course of 6 - TCHP unless your wife has serious allergies or side effects. If surgery is after chemo, they will likely do several imaging tests to pinpoint the area for the BS (breast surgeon), and that's time enough to know.
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I didn't get any scans during the treatment with TCHP, just physical exams by my MO. When all 6 treatment cycles ended, I asked him about a scan before my surgery (he didn't bring it up), and he agreed it would make sense to get an ultrasound. At that point and for some months since treatment 2, I didn't have a palpable area any more.
My surgeons, as distinct from the MO, wanted me to have an MRI, which I did in addition to the ultrasound.
Best wishes for everything your wife and yourself are going through.
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rgail007:
I had trouble getting the Neulasta. My blood values just barely keep in to the normal range when I am healthy so I knew everything was going to tank in to the red once I started the chemotherapy but apparently my insurance insisted I get neutropenia first (and hopefully die a quick death before I get to the hospital) and if I survived then they would cover it. In the end it got sorted out and I got the Neulasta and my neutrophils are ok but everything else took a dive so I would definitely be neutropenic right now if I weren't on it. It's dumb though because a hospital stay costs them more than the Neulasta.
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MinusTwo and misslil:
Thanks so much for your inputs and warm words, my wife and I really appreciate that. Yes, the MO said the tumor shrunk a lot during the examinations 3 days before and one week after the second treatment. We could barely feel it as well, but we were wondering if we should ask for imaging tests to get more "accurate" and "quantitative" information. Now it sounds like there is no need to do that :-)
misslil:
Since you "didn't have a palpable area any more" since treatment2, you must have the PCR at the end of 6 treatments, correct? If you do not mind, which surgery did you choose after that, lumpectomy or mastectomy?
One of the "disadvantages" of the Neoadjuvant is, we never know the accurate staging information, would that really matter?
Thanks a lot.
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hi ltwj,
I see that you decided on the flap surgery. How did it go and how was your recovery? Have you had to have any follow up surgeries?
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My recovery from Diep flap was pretty easy. I do not require any more surgeries, they look great and no healing problems. I got my 3 D nipple tattoos about 3 months ago and they look fantastic. My stomach is still very tight but it looks great. I am working out 3x a week at the YMCA without any problems.
From tne chemo though, I finally had an ENT apt because my hearing is off and I’ve lost 20-30% of my hearing due the the carboplatain
My tumor was no longer palpable after 2 chemo treatments so I chose lumpectomy ,after MRI and sonogram couldn’t find it, BUT it was still there after pathology from the lumpectomy. Had to go back and I chose a BMX. Glad I did because pathology found DCIS in tne other breast which has never shown up on and mammogram, sonogram or MRI.
I am taking advantage of the free YMCA Livestrong class and working out 3x a week now before school starts again
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LilyCh, I don't believe I had full PCR. The scans indicated a very tiny area that appeared to be left, which was removed in the surgery. The MRI and ultrasound interpretations were somewhat different. In one of them, they thought maybe it was a shadow from dead cells killed in the treatment, the other thought it was a small kernel of unresolved disease. I've thought of it as the latter, so as not to be overly optimistic on how easy this stuff is to kill off.
My surgery was a little weird. I had a mastectomy previously on the same side after DCIS years ago. The new HER2+ area was found where there was some residual tissue post-mastectomy. They did another surgery on top of the previous mastectomy and removed it, with very wide margins to try and clear out any more tissue that could pose future problems. They called the last surgery lumpectomy for lack of another name to give it.
I was fortunate that I was having bilateral mammograms after the mastectomy and the new area got picked up early. More commonly, they only do mammograms on the non-mastectomy side.
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I don't think I will have a full pCR but will be doing a mastectomy anyway because of family history, location, small cup size, I want to avoid radiation, and my cancer has a high recurrance rate with lumpectomy even with pCR.
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Thanks so much, misslil and WC3.
My wife is going to have the 3rd treatment late next week, but I guess it is no harm to think ahead :-). My wife does not have a family history, she is in the middle of 40. When she felt the lump three months ago, her PCP even said there was no need to test it further...For the recurrence rate, which doctor should give us the analysis, BS or MO or RO? My wife had a genetic test right after the dx, the genes (9 of them) are all negative, I am not sure what other factors should be considered. if the rate is indeed low, I would prefer my wife does the lumpectomy.
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Thanks for sharing about your DIEP results and recovery. I am scheduling my DIEP for October, to replace my failed implants. The one side failed because of post-radiation capsule contracture. I keep second guessing my decision though, wondering about the decision to elect for a massive bikini line scar I am going to have all just for soft, hopefully symmetrical boobs. Al these big surgeries for what, “perfect boobs”? All kind of a joke, hack jobs really. It’s nice to hear you like your 3D tattoos. That’s another thing I’m on the fence about. My two sisters also justhad BMX’s wih implants and one of them just got her nipple surgery and they actually look great, scarring aside, which I am sure will fade nicely with time like our other scars. Can I ask what made you decide on 3D tatoos over surgical nipples?
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About lumpectomy vs mastectomy, be sure to also consider radiation effects that will be there if she chooses lumpectomy. I am through it all, both TCHP and radiation. During treatment chemo was pretty bad and I had so many side effects in the moment, but now, 2 years later they are mostly gone: no nerve numbness anymore, hair grew back, no more nausea and diarrhea- yay. The only lasting effect of the chemo seems to be thinner hair. Not bad. But wow it sure would have been nice to have avoided radiation. During treatment it was pretty harmless. Yes the skin blistered, but healed back up pretty quickly. But now I live daily with the after effects: limited range of motion of my arm on the radiated side, damage to ALL the skin, flesh, tendons, and probably lung and bones. Not to mention the capsular contracture. I even feel all this tightness and sometimes pain in the muscles and tendons all the way on the other side, on my back. My husband gives me massages and has to massage the left side of my back much lighter than the right so it doesn’t hurt. Just something to think about. Either way she will get through it and will be happy to be cancer free.
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Thanks much, Khanniganslp9.
Yes, we will consider all the factors, we have over 2 months to make the decision.
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Experiences vary quite a bit. I've had radiation twice now, and no lasting effects either time. I had chemo this last time, and it was difficult of course. 18 mos or so after it ended, mostly i'm good but my hair was wrecked in the process.
I'm on the new Nerlynx medication. I have not had awful SEs from it, but it seems to be induce fatigue that's been building up over time. I will be happy to get to the end of the year's treatment.
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hi I'll have my second chemo of TCHP this coming Thursday. SEs aren't great but bearable. I think the worse was the thrush and then dehydration. I'm an odd duck looking for some one like me. I have mixed lobular and ductal cancer. ER+. PR+. HER2- in breast and HER2+ in lymph node. Anyone else
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That is an interesting mix of different markers you have. My experience from having ILC/IDC mixed was interesting too. I think the IDC responded to chemo but the ILC didn’t at all but it responds to estrogen blocker. The ILC is also a sneaky one since it often is hidden in all imaging and it grows in a single cell line, making it easy to hide and possibly easy to get false clear margins. Because of this I’m happy I did a bilateral mastectomy. My only recommendation would be to hit it with all the big guns, ie be aggressive with your treatment choices instead of conservative. As you know chemo is no fun, but there is an end to it so just hang in there. It will be in your rear view mirror sooner than you think!
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misslil: thanks for sharing your radiation experiences, but why would you need Nerlynx? isn't it the "standard" treatment to have 6 TCHP and H for the rest of a year? were you allowed/needed to have additional HER2 medication after a year?
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khanniganssip9, how was your ILC/IDC mixed diagnosed? by imaging or biopsy? before surgery? thx
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They found the ILC completely by chance. Later, after my mastectomy they said due to its size and the fact that I had had clear mamograms for years, that the lobular portion had been their for years. All my mamograms including my last one in October 2014 were all clear, always just with the caviat that my breasts were “dense”.
What brought the cancer to the fore was that I had been having hot flashes for a couple years on and off, then by September 2015 they were getting really bad so I asked for hormone treatment. And yes it worked great for hot flashes. Then one month later i felt a distinct small lump, and my nipple started to become distorted/ pulled slightly inward. My MO and I believe this was the IDC growing from the extra hormones I was taking. In December they biopsied it, and it came up mixed ILC/IDC. They did an ultrasound, and along with physical palpitation they estimated it to be 2cm that was just the IDC we were feeling, that showed up on ultrasound. Because I was triple positive we decided to do neoadjuvent TCHP. No MRI was taken. After the second round of chemo the 2cm mass was hardly palpable- partial response we figured. So after chemo was done and before my mastectomy, we did an MRI and they saw absolutely nothing. In June 2016 the pathology came back and the residual tumor was 6cm - huge and never seen on imaging, not felt by palpitation. Had I just gotten a lumpectomy the lobular could have been missed altogether, or maybe they wouldn’t have gotten clear margins and I would have gone back in to do the mastectomy. How did they find yours?
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LilyCh, Nerlynx is a new medication in pill form that is available for use after completing TCHP and the year's run of Herceptin. it may reduce recurrence risks, there's a separate thread on it if you want to read up on it.
It's not in widespread practice yet, it was only FDA approved last year. I'm the first patient under my MO who is taking it. You take it for a year, in my case concurrent with Arimidex.
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Khanniganslp9: my wife did not get diagnosed with ILC. Her IDC(ER+/PR+/HER2+) was biopsied. Hope there is nothing being overlooked.
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