HERCEPTIN and/or PERJETA Threads
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Hawkeye: I didn't see the date but there it is! I did see the 5cm/Her2+/liver mets. WOW - I have had my first perjeta (yesterday) heceptin/Taxol today. What a long day!! Next session will be all three - .
It made for a long day today but I am feeling pretty good right now. Probably all the steroids and such.
Will post after I see Dr. S.
Cheers
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Dear Elderbery - that is the way to go! Word "congratulations" might not fit here but it is a big win in this situation for sure!:)
Saulius
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Hawkeye: my new MO is WONDERFUL. He is exactly who I need in my corner. He gave me hope; he was warm, kind and actually a bit funny. I may still have to have my next session at the old place but he is working to get everything transfered over to him/Lion's Gate asap. My DH was happy, feeling like he can breathe. I am not sure who was more stressed out this last while.
Oh - my first chemo went really well. I ate like a little piggy when I got home. Must have been the steroids. I hope that continues.
Thanks to all of you cheering me on! It makes me feel blessed.
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Elderberry. That's such good news!!! I'm was happy to get your update.
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Hi Ladies (and gents?)
Sorry to jump in like this, but it's looking like A/A may have failed me and my mo wants me to do HP next. Foundation 1 testing showed I have the ERBB2 mutation even though I have always been HER2-. Anyone ever heard of this? I've asked for an explanation from my mo, but I still don't really get it.
Mainly I am wondering what to expect with this combo. I don't think she is planning on Taxol, just HP. I know it is an infusion every 3 weeks and I've read the se's but would appreciate any suggestions or comments from those who know best.
Thanks in advance!
.
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jobur, so sorry to hear that A/A failed.
Here's my limited understanding of HER2- and ERBB2 mutation - there is a difference between amplification and mutation. HER2+ is driven by ERBB2 amplification. Mutations drive the growth of HER2- but are rare in HER2+, and if you have both mutation and amplification you are more likely to be resistant to HER2 targeted treatments (although lapatinib appears it might be effective). In approximately 21% of HER2- people, they found that the ERBB2 mutation was selectively expressed in cancer stem cells, which comprise a very small number of the tumor cells (and strongly associated with bone mets). Since the mutations aren't detected by ICH or FISH, they don't meet the threshold for HER2+. Researchers realized that sometimes HER2 targeted treatments were effective on ERBB2 mutations so they started human trials to determine if it is a valid treatment strategy.
According to the largest trial, apparently in some cases it does but not as well as they had hoped. The trial NSABP B-47 found that there was benefit to disease free survival when IHC was 2.1, but not when it was 1.9, and they recommended against approving the expensive drugs for HER2- with ERBB2 mutations, and that's the latest I know. https://www.ascopost.com/issues/january-25-2018/nsabp-b-47-no-benefit-for-adjuvant-trastuzumab-in-her2-low-breast-cancer/
Your MO is probably thinking it's worth a try since H&P is much easier on the body than IV chemo and you might be one who does respond. I'm interested to know if your insurance company will approve it, given that NSABP recommended against it due to the cost. I haven't heard much about more being done with this or a more recent trial with different results, but I have been preoccupied lately and may have missed it, so maybe they are still proceeding with trying it.
H&P was tough on me for the first couple months - felt like I was hit by a truck and came down with a bad case of the flu, but my body settled into it and hardly notice it now. About the worst is the constantly dripping nose and some fatigue, with an occasional Herceptin headache and nosebleeds. That's all minor compared to doing chemo. I don't even have a problem with D from the Perjeta. Claritan helped with the bone/joint pain that I had in the beginning. If you don't already have a port I think you'll need one, I was told that H&P must be given through a port.
Please keep us updated, If you decide to try H&P I'm interested in hearing how things go for you, and hope you're one of the lucky ones who does see good results from it.
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LoriCA - Thank you so much for your long and thoughtful reply. I *think* I have a little better understanding of the relationship between ERBB2 and HER2+ after reading it. I don't know for sure if A/A has failed me yet, but it's looking that way and I want to be well informed before changing tx. I think it will either be HP or Xeloda. This may be a good time for a 2nd opinion.
It looks like you got a super whammy at dx. Yikes! I'm glad to hear HP has been tolerable for you and hope it works well for a long time to come.
Thanks again for your post, I really appreciate it and the link to the study.
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Elderberry: Sorry, just seeing this. I’m so sorry to hear you’re scared. Stage IV can be very overwhelming, especially when you first find out. The shock does wear off. You can do it! I just had a scan on Wednesday and am still NEAD and feeling fantastic! H&P works wonders! Stay strong. Get out and walk as much as you can. Sweating out the toxins post treatment did wonders for me! We’re here for you when you need to vent. Sending positive thoughts your way!
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Not sure if this article has been shared here before so sorry if it’s a repeat. It's very specific in the population studied: de novo, Her2+, receiving H&P (which I am). Super reassuring results. Progression free survival and overall survival were both almost 100% at 10-years for those who achieved NED. http://theoncologist.alphamedpress.org/content/early/2018/08/23/theoncologist.2018-0213?related-urls=yes&legid=theoncologist;theoncologist.2018-0213v1
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jobur thank you, but unfortunately I appear to be one of the unlucky ones who has some de novo resistance to H&P. It's working on some of my mets but the worst of it has been out of control again since last year. It started acting up 3 months after I finished the first round of chemo, was resistant next time we tried chemo, we tried frying it to a crisp and it was a month before there was even any response, 70 Gray of rads slowed it down but only three weeks after I finished there are signs that it's kicking into high gear again. The biggest problem is a tumor that's tangled in my brachial nerves. I lost use of my arm for several months a while back, and my MO wants me to be prepared for it to happen again (that one causes a lot of pain). My skin mets went into hyperdrive - they had to expand radiation plan twice just during the first week because of how fast it was spreading, and I also developed new distant mets while on H&P, at the same time that my liver and skeletal mets were resolving. I have everyone scratching their heads trying to figure out what to do with me.
We haven't yet decided if we'll leave me on H&P since it's working so well on my liver and bones and try adding another chemo to it (and hope we can find one that works this time), or if we'll change treatments altogether. I'm in a holding pattern right now, waiting for enough radiation to leave my body so we can do scans (later this month), and then try to figure out what to do with me next. Had new biopsies done, sent sample for Foundation One CDx, it's still strongly HER2+ and there's no obvious reason for why it's not responding to HER2 targeted treatment (I have ERBB2 amplification only, no mutation). My MO says I'm "complicated", I told him I'd much prefer to be one of his simple patients with a clear path.
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Yikes indeed LoriCA! Up until now I have been that plain vanilla patient you wish to be. I do think I've had a pretty easy time of it so far.
This may be a dumb question, or maybe your list of tx is incomplete, but did anyone ever mention doing ER+ tx, maybe adding anastazole or femera to H&P? Maybe there are reasons you can't do both at once, just a thought being as how you are so darn "complicated". If not, there seem to be so many different chemos, there must be one that will work for you. The trick is finding it, right? Are you able to go to a major cancer center or see an mbc specialist? I'm so sorry you have had to go through so much.
And so happy to hear quite a few HER2+ gals are long term NED! Can't help hoping this may be a cure for some.
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The way I understand it jobur, if I were triple positive there would be a case for trying an AI, but since I'm Luminal B with a super high Ki67 there is very little chance I would respond to it. Luminal B has high de novo resistance to hormone therapy and the higher the grade, the higher the Ki67, and the lower the ER and PR, the less likely it is to respond. I hit all three out of the park. Then the HER2 has a complex relationship with ER that I'm just starting to get my head around - the HER2 overexpression downregulates ER, so while it expresses estrogen receptors, it usually does not have a corresponding expression of estrogen-regulated genes. That's strike four for little reason to think it might be an effective treatment for me.
Anyways, first we have to get it under control again before we can try another "maintenance" strategy. Fun times!
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Dear LoriCA and others, how are you doing? I don't like the silence, so I'll try to break it...
Last news is that my wife is now after 4th (16th all-together in past 2 years) THP infusion, and all external signs are gone. She was checked thoroughly by ultrasound 10 days ago and results were "positive dynamics with infiltration almost gone". She still says that the aureola region is a bit harder than in the other breast but it is difficult to determine by palpation. I am worried (and she too) that reaction to chemotherapy, i.e. taxotere, has slowed down, but maybe we are simply too nervous and sensitive about the situation... I believe if she reacted to first 2 treatments so well, she should be reacting now too, what are your thoughts? Next week we meet with our doctor again, so I hope she schedules some MRI or something. Everywhere else, i. e. in liver, she is NEAD (or NED, I still don't know which abbreviation to use)...
I hope you all are doing fine and enjoy summer. I really wish this to everyone here from the bottom of my heart,
Saulius
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Saulius glad to hear that it seems to be working well for your wife. I'm not sure what you mean by her reaction to treatment, but if you mean tumor shrinkage I don't think it would be unusual to have a strong initial response that lessens over time. It certainly seemed that way to me the first time.
I've been quiet because I've been having all of my scans this month before we decide what to do next (but still on H&P for now). I have a tumor tangled in my brachial nerves, the MRI showed that it is still bigger than it was in June 2018 (last MRI) and still showed the skin thickening that is associated with IBC, but I'm waiting for the results of my PET/CT to see how it compares to October and January scans. The pain returned 3 weeks after I finished rads and now the fingers of my right hand are numb. I lost use of that arm for several months in 2017 and that's my big fear right now (other than the fact that nothing has worked for one year now). My MO put me on a B complex and I have exercises to do that are supposed to help regenerate the nerves and break down scar tissue. The exercises cause a significant amount of pain and I really hate them, but I do them. I'm just in a holding pattern right now, trying not to lose faith. My MO will call me next week to discuss my PET/CT and we'll discuss what to try next.
Lori
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Dear Lori, I am very sorry for what you are going through (I really have no words) but please don't lose faith. I believe exercises have to help with your hands and arms - seems your MO is a good MO if he puts you on complementary medicines and prescribes exercises. You are in our thoughts and prayers. Please, keep us updated, And yes, that is what I meant, you painted it very well, thank you - the initial reaction after first 2 chemo-therapies was very quick, you could see big difference after a few days after infusions, and now she says it became slower. Of course, now visually you can't see anything, and palpation also gives not much information, so it is very difficult to determine if it is improving or not:/ Is there really anything to improve at all or am I going crazy? I really have no patience with these things... Just hope MRI will be scheduled soon to give us more information. I'll try to post when I have some news. Ahh...
Saulius
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YES! the film "Living Proof" gave me hope as I went through my treatment in 2017-18. Though it has its side effects, it revolutionized treatment options for all of us. I was yelling at the TV when that crochety old geaser of a dr was not willing to back the trials. Ha Ha, I am so thankful that we live in the time that we do. It seems like every month there is a new treatment being advertized for Breast Cancer.
Love you ladies. Lets all keep fighting, encouraging and winning the battles everyday.
Angelsgal57
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Well, I was supposed to get my every 3 week treatment Tuesday but my echo said no. Apparently my ejection fraction is down, the amount of blood the heart is pumping out. Doc didn't seem too terribly worried but wants me to see a cardiologist before I get any more treatments. I just got back from vacation in Pennsylvania, walked all over Gettysburg without issue, so doc says it's probably something that will just resolve itself with a little time off Herceptin and Perjeta but wants me to see the cardiologist just to be safe. Stopping treatments scare me more than the heart issue.
I don't know if its white coat syndrome or what, but since he's told me this, my chest hurts. It was hurting a bit for the last few weeks but I thought it was indigestion, now it's freaking me out which I think is making the whole thing worse. Ugg, cancer sucks, so much more than people realize.
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I had a bad week as well. After 3 years on HP, all of a sudden, SE are popping out of nowhere. Neuropathy all over my body for the first few days post infusion, diarrhea starting. Only had that when a chemo drug was being given as well. Nothing with the HP before.
I know I can take immodium for the diarrhea, will probably start taking 1 2mg dose before diarrhea in morning to slow digestion but am more concerned about the head to toe neuropathy. That is difficult to deal with, my deep breathing exercises were the only thing that relieved it. Cannot live life like that. It is not permanent BUT I fear it could become permanent. Really scares me. I am planning to discuss just taking Herceptin as I was not having so many issues. Will see what MO says.
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Big Peaches, you posted awhile ago but I don’t look at this thread very often anymore since I’m no longer on this drug combo. However, I wanted to say that I also suffered from reduced cardio-efficiency on these drugs. For me, all that was required, after a bunch of cardiac tests, was the addition of Lisinipril (an ACE inhibitor) in a very low dose. It took a week or so to get used to the drug as I had headaches from it initially but my heart function improved after starting it. Mind you, my HP run ended shortly thereafter due to progression but I next moved to TDM-1 which was even better for me, and for longer. I got almost three years on TDM-1 and my heart function improved while on it.
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Well, turns out, the tech read the echo wrong and everything is fine. All this worry for nothing (which I'm thankful for, but still) I won't be getting my echo's at the cancer center anymore, I'll be going to the cardiologist office from now on, where they know better how to read them.
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bigpeaches, sorry you had such worry glad everything is ok
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Hi to all in this forum. I'm coming over from an Ibrance forum because I've had progression on Ibrance/Letrozole after two years. A biopsy of an enlarged lymph node shows malignancy. I have a primary tumor in the right breast and had been ER+PR+HER-. Biopsy now showed ER+PR-HER+. MY MO now wants a mammo of my left breast and for me to start Taxatore, the Herceptin and Perjeta. Has anyone had a similar experience? It's so disappointing to progress. I feel fine but scan also showed "trace pleural effussion". Anxious to hear from those who have done well for awhile on Herceptin and Perjeta.
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it is just shy of two years for me but Taxol-Herceptin-Perjeta has done a great job of keeping my tumors under control
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Other than neuropathy, Herceptin and Perjeta have held me stable.
I have been NED from the neck down since 2015 at diagnosis.
I did get a brain met but only because Herceptin does not cross the brain and I most likely had brain mets all along. My brain is stable and still shrinking.
My doctors like me as a case study since it is rare for people to metastasize to the brain before another part of the body. I am glad it has worked out this way as I have been fortunate to have a decent quality of life considering my cancer type.
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i was diagnosed 11 years ago, stage IV, with Mets to liver. I have done very well until about 6 months ago. I have been on herceptin the whole time, but perjeta was added about 4 years ago. I have been experiencing bad leg cramps and my legs are constantly aching I hate to stop perjeta, so I was wondering if anyone knew of anything else I can try to ease the pain in my legs. My magnesium and potassium levels are fine. I appreciate your help
Thank you
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Reneeswan I wish I knew how to stop those muscle cramps and spasms. Now I get them in my feet, along my shins, in my hands, and in my ribs (intercostal spasms) front and back. I'm not dehydrated, my potassium and magnesium levels are fine, I've tried everything people have suggested including increasing my level of exercise, and I'm convinced it's the H&P causing it. It seems to go in cycles but sometimes they are so bad and last so long that they bring me to tears, once they start I usually get hit with one after another for hours, sometimes with multiple places cramping at once. I feel like my MO thinks I'm exaggerating about how bad and debilitating they are. One night after getting hit with one painful cramp and spasm after another for 3 straight hours without a break and not being able to get them to ease up, I took a muscle relaxer (flexeril) and it seemed to calm things down, but that's not a long term solution because I don't want to take a muscle relaxer every day. I wish my doctor would take me more seriously and help me figure out what's causing them and how to get some relief.
Saulius thank you for your prayers and good thoughts. How is your wife doing? Complementary/integrative therapy seems to be more acceptable here in California, my (regional trauma center) hospital even has an affiliated naturopathic and Chinese herbal medicine center, but I was surprised when my MO suggested the B complex because in the past he laughed when I asked about supplements. The B complex seems to be helping the neuropathy in my feet (Grierson-Gopalan syndrome) but isn't yet helping the nerves in my hand. On the positive side, my hand doesn't seem to be getting any worse.
My MO said I'm too strong and healthy for more chemo right now, he doesn't want to ruin my quality of life (funny, I don't feel strong and healthy compared to how I used to be!). So I'm staying on the H&P for now since it's working on my liver and bones (both still clear on my last scan), and we're closely monitoring the rest of it. Not sure I'm entirely happy with that decision, I was hoping to try to kick back the troublesome tumor a little more, at least get it smaller than it was a year ago and enough to get me completely out of pain. And now most of the nodes from supraclavicular down through my abdomen (mediastinum, retroperitoneum, mesentery) are all lighting up on my last PET scan. He thinks my nodes are metabolically active because it's my body fighting the cancer, and not the cancer spreading through my nodes. I was worried about that, but I did some research that showed that it's not uncommon for nodes to show activity on a PET scan after treatment, and less than 50% show cancer when biopsied. Too many oncologists put a patient on chemo that isn't needed just because nodes light up on a PET scan without biopsying to verify that they are cancerous. So I'm in this weird watch-and-wait period, not entirely happy about it but I know I'm doing better than I should be so I'm trying to be happy about that.
BigPeaches I'm so glad to hear that they were wrong about your echo, that's great news. Horrible that they put you through all of that worrying and stress for nothing.
Lori
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There are things you can look into for the cramps. Mine can get pretty bad too. Too help prevent or reduce severity my first suggestion is to apply a magnesium cream/moisturizer. An example would be this https://www.amazon.com/Magnesium-Soreness-Moisturizing-Organic-Vitamin/dp/B01LZK5NAJ
Taking extra water with electrolytes or even drinking a sports drink will help offset or prevent the cramping. It has done so for me. I also use salt if I am out of sports drinks. If you don't want the calories of a sports drink, you can dilute into water and still get some help.
Magnesium and B vitamins would be a good idea as well. Good luck.
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Dear Lori, thanks a lot for asking and remembering. My wife is really not bad, although 5th chemo (17th now in 2 years) was rough. She had a small rash (allergy?) on her leg which exploded instantly after she got 5th docetaxel infusion (with 38 degree temperature), and this is how we ended up in NCI's ER, where they checked blood, prescribed prednizalon and left her for observation for 2 days. ER staff and nurses were wonderful and allergy/rash subsided after a few days. What shocked me and made us worry a lot was when ER chemo-therapist came in, checked the leg and said "it can be anything, maybe should be biopsied". We were like "whaaat, do you mean cancer?", and she was "it can be anything". What the hell? Anyway... And because of prednizalon, our DC/CIK infusion was postponed:/ After all of this we decided that we should check other opinions, and went to another city to a chemo-therapist, who was very kind (we loved that meeting) but who's verdict was "only further systemic treatments". Then we went for 3rd opinion to yet another city, to a very experienced breast surgeon and he said "well, situation is really different and surgery/mastectomy should be considered". Then we went on for 4th opinion:), directly to the head of NCI's breast surgical department, and he, a very experienced surgeon, said that in our case surgical interference should be considered for sure and that "your thoughts are very logical". We also came in with last week's MRIs (inner organs - all clear, breast - still some C left but much less), and he said that he'll recommend us for MDT (multidisciplinary team) for local treatment. According to him, just 5 years ago surgeries for stage IV patients were not performed but now they have done it to several women and "they are well, results are encouraging". He also added that a whole body PET might be needed "to prove that no further metastases exist", and then it should be "a go for the surgery". Well, what I can tell you about all those meetings: they gave us HOPE! And we all know what a big thing hope is... We will still have to open many doors (I am already shivering when thinking about the meeting with our chemo-MO who most probably will be not very happy about us wanting a surgery) but at least we can be hopeful. Another strange thing was... I also asked doctors about the IBC, and each and one of them said "How come did you decide it was IBC? No pathology report says it. If it is IBC, it should be on at least one pathology report". Again "whaaaaat???". I mean... I clearly remember words "infiltrational BC", and when I asked if it is IBC, it was confirmed with clear "yes". Well, today I really don't understand anything...
Lori, unfortunately I know nothing about cramps:/ Could you go somewhere else than to your MO to consult about them because 3 hours and crying does not seem like these are symptoms to live with?
Hugs to everyone,
Saulius
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Saulius IBC will never be on the pathology report because IBC (inflammatory breast cancer) is a clinical diagnosis based on a set of symptoms (rapid onset, swelling, heat, peau d'orange, redness/discoloration, etc) not a pathological diagnosis. The pathology report will always say IDC (invasive ductal carcinoma). Even when the skin punch pathology report lists characteristics typical of IBC such as dermal lymphatic invasion and sheet-like growth, it will still only give a diagnosis of IDC. I think I've only seen IBC written on one set of papers, I think it was on an MRI request so they knew to pay close attention to the skin thickening. Things sound promising for your wife, I'm glad she has you at her side to help her through this. Hopefully the chemo will continue to get things under control, clear up her skin, and she can have the surgery.
Mara thank you, but the cramps and spasms aren't due to dehydration or an electrolyte imbalance like typical muscle cramps. All of those suggestions have been tried and haven't provided any relief. In addition to daily potassium and magnesium supplements and drinking sports drinks with electrolytes, I've even tried quinine (from tonic water) as suggested by my oncology nurse and that didn't work either. I already take a B-complex twice a day to help with nerve regeneration, and that hasn't helped. I carefully monitor my hydration level and make sure I'm always well hydrated. The spasms have gotten progressively worse for a year now and I've tried everything commonly recommended for muscle cramps with no luck. I'm afraid they might be a type of neuropathy.
A note to anyone on H&P who is thinking about magnesium supplements, my MO did warn me that daily magnesium supplements will often cause diarrhea, so if you already have a problem with it from the Perjeta be warned that magnesium could make it worse.
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LoriCA you described my experience perfectly I truly believe my issues are from the perjeta and I don’t think my onc is hearing me. He just prescribed a muscle relaxer I took it last night but it didn’t help My legs ache constantly. I pray we both get some relief.
Mara51506 thank you for your suggestions. I plan to try the cream I appreciate the input.
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