HERCEPTIN and/or PERJETA Threads
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Hawkeye
I will be one day over the 6 week gap point on Fri 18th Jan. Therefore I should have the loading dose but my Dr said he would make sure it was just the usual dose. I hope this is what happens on Fri as it all comes from the pharmacy and if he doesn’t say anything, a loading dose would automatically be given and I don’t want that.
Andi- how long had you been NED before you decided to spread the doses out?
Liz
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I'm so happy, I just came from my three weekly herceptin 5 minute injection, where doctor told me in my country Roche is dropping the price of one vile by another 30 percent, which will make it just a little more expensive than normal chemo.. So more medical insurances will cover it yay.. Only a small number of privileged women have access to thus drug in South Africa which is so unjust.. But good news is always welcome
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Liz - I had been NED about two years when I started spreading them out. I don't spread them out THAT much right now...I went in October, and then again the beginning of December, and then again today. Today they got it right - no loading dose! I'll probably go again in March. I love going on the weekends because there is nobody there.... you get in and out so quickly and it's nice and quiet!
Daywalker - I think maybe I missed this before - you get your Herceptin in an injection form? Like a shot?
Also, have you all seen the movie Living Proof? About the development of Herceptin? You probably all have but if not, it's worth watching. I can't believe I didn't know about it until this last week.... it made me cry. We are so lucky to have this drug.
XO
Andrea
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I would love to get a 5 minute injection. That would be awesome.
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I was surprised to hear of an injection too. Did some quick research and looks like subcutaneous Herceptin (called Herceptin SC) has been in use in Europe for a while, was just approved in Canada last September (2018), and the FDA accepted an application for use in the US back in July but I can't find any additional info for the US. Wonder if it's significantly cheaper than the IV form?
Here's some info about approval in Canada - https://www.newswire.ca/news-releases/herceptin-trastuzumab-subcutaneous-sc-formulation-approved-in-canada-for-the-treatment-of-her2-positive-breast-cancer-693139161.html
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Hi ladies, yes we got the injection in July 2017, in South Africa there was about a 500 dollar difference between IV and injection, but that dropped even more since beginning of 2019. It came out just as I started my three weekly maintenance after chemo and herceptin IV.. I'm not going to lie, it burns a bit initially because the substance is quite thick, but man it is way more convenient and just as effective lol
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Hi, we have Herceptin injections in Denmark (Europe), and I have had it until the fall last year when the patent for IV Herceptin expired, and the price for IV went drastically down. So now only IV is offered. As Daywalker says It burns a little (about 30 sec. after the injection - I had the injections in my thighs), but it is really convenient compared to IV.
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Liz,
I hope the pharmacy has the right order for no loading dose. I would definitely mention it as soon as I talked with one of the nurses. I'm going to bring up to my Onc the possibility of spreading out treatment without the loading dose. First time I brought it up was last year. Maybe since my latest CT scans gave me yet another year of NED, she'll be more receptive.
I noticed with insurance papers from my last treatment, December 31st, my insurance company was billed 29,892.00 for herceptin. Yikes!
Andi, I did watch the herceptin movie. Remarkable. I was in tears nearly the whole movie. Did you know one of the women featured in the movie is still living? Amazing.
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Andi,
Thanks for that info on when you started to spread out the tx. When my onco mentioned it he gave me the impression that it would be in years to come. However, there is no magic point for when any tx should be stopped. They just don’t know. My feeling is that he would only have that conversation with me when ai am 5 yrs plus on from the stage 4 dx which was March 2017.
Hawkeye,
I had a normal dose on Friday and feel fine. Been to the gym this weekend and no bad SEs yet.
On the injection: I could have it now but I’m on a trial for Perjeta and so both need to be IV. However, in the future I hope to just have the Herceptin injection.
Liz x
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I will ask my MO about injectible Herceptin. A shorter day would be nice. Had to skip a treatment as I was caring for my mother who had stage 4 lung cancer. She passed away Jan 17th 2019 so I am able to get back to my own treatment. Glad she is not suffering anymore.
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Living Proof is a great movie, I cry through the whole thing as well because I know I would be dead had Herceptin not been invented.
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I am going to ask my oncologist about the injection for Herceptin! I am surprised she hasn't mentioned it - even though she did say a pill form was coming in the future. Thank you all for the information. I could handle some stinging and burning for a 5 minute shot! That is amazing. (never thought I'd be in a position to actually WANT a 5 MINUTE shot.....)
Hawkeye, I did not know that one of those women is still living! That is incredible. My oncologist told me that she was the first in Denver to give a patient Herceptin, and that that very first patient is still alive....
Myboobstrie…. so sorry to hear about your mom. My mother in law, who was one of my best friends, died of lung cancer last June. She was diagnosed in December died in June. I was fortunate enough to be able to spend most of the six months with her, but it very painful thing to watch. I am glad neither of them are suffering anymore.
Liz - my side effects were growing worse and worse from the Herceptin, which is why I started spreading mine out and taking "vacations"... and then I got sort of used to only having to go once every two months or so - maybe a little more frequently - and my scans have been consistent. I don't know that I would have gone that route had the SE's not been bad, but it does make my life feel a lot more manageable.
XO
Andi
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Hi Andi
What SEs troubled you the most with Herceptin. Taking the 2 drugs together makes it harder to know which drug is causing issues.
Liz
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I may be a bit of an aberration, but just so others who are HER2+ know this can happen - all of the mets throughout my skeleton, liver and lymph nodes have apparently resolved completely on Herceptin, but my IBC started to flare back up a couple months after I stopped chemo earlier this year and Herceptin/Perjeta didn't even slow it down. We did another biopsy that confirmed it was still strongly HER2+. Adding Taxol to the H&P didn't slow it down either, so I'll be taking a break from H&P for a couple months while we give radiation a try. If radiation is successful I'll go back on H&P for maintenance.
It's weird (and frustrating) how some of my cancer responded to Herceptin, but some of it didn't respond at all.
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LoriCA the next line of treatment is TDM1. This is what you need, radiation sure to some areas but you also need treatment. Hugs to you, how scary this is
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bstein TDM1 (Kadcyla) would be next if this was progression, but it's not considered progression by two oncologists. It's a Herceptin-resistant (didn't progress to resistance, was initially resistant despite having HER2 status confirmed multiple times) and chemo-resistant recurrence of IBC. IBC spreads very quickly, and since Kadcyla is Herceptin combined with a chemo and the IBC has been resistant to both, we ran out of time to play around with chemo drugs trying to find one that might work because it was spreading too fast. The radiation is a Hail Mary pass to try to stop it. Both oncologists have stated that I can't be on any systemic treatment during radiation treatment because we need to be able to judge the response. IBC also has a risk of being radiation-resistant, and since many of the symptoms of radiation damage are the same as IBC symptoms, it's going to be hard to judge if things are getting better or worse unless/until the lump shrinks.
It's scary not being on any systemic treatment for a few months, I have to choke down the fear every day, but I have no choice. The area being radiated includes part of my left breast, everything on the right side over to a section of my back, and includes the supraclavicular node in my neck, so it's a fairly big area.
Not sure yet if I'm going back on Herceptin or Kadcyla if the radiation works. Since the rest of me was responding so incredibly well to Herceptin, part of me wants to wait until it progresses before moving on to Kadcyla.
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Lori I’ve got IBC too and had a local recurrence.I assumed the H&P wasn’t working so I would go on to TDM1, but my oncologist said the same thing, it was working to keep the Mets at bay so I would stay on it until I had actual recurrence. So I had a mastectomy and radiotherapy, which included 12 boluses and the supraclavicular nodes due to it being IBC. 11 months on now and I’m still okay, been on H&P for over 3 years now. I hope the radiotherapy works for u!
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BellaTassie it's reassuring to hear that you were told the same thing when you had a recurrence. Did you have to stop H&P during radiation? I think I'm going to push both of them again on the H&P. I can understand why no chemo, but H&P isn't a chemo and it hasn't worked on the IBC anyway.
I've been told twice so far that surgery would hurt me more than help me. I know that it can be iffy with IBC and they only cut in certain cases. After reading what Amarantha is going through after having a mastectomy that they originally didn't want to do, I'm kind of glad that my doctors are steering me away from the route. I have nerve entanglement too, which makes it more complicated (if not impossible).
Glad to hear that it worked for you and that you've stayed on H&P successfully since then. That gives me hope!
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Hi everyone! Not to change the subject, but I wanted to let y’all know about my issue with cardio toxicity lately. Background info, I’m 39 years old and healthy except for this evil passenger inside me. When I started the journey in the summer of 2017, my baseline Echo showed my EF was 61%. But over the last 8 months is has been declining and recently dropped down to 39%. I have been on an Ace Inhibitor since January, but I guess it hasn’t helped enough. My Cardi says my heart is perfect in every other way, except where Herceptin is causing left ventricle dysfunction. So she’s doubling my heart med and wants me off H&P for a while. She is talking with my Onc on the game plan. I will have another Echo in a month. Prayers and fingers crossed that my heart improves this time around, since the last time they held tx, it didn’t help. ❤️
Thx for listening ladies! Have a great day!
Jenny
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alwaysbepositive,
I have an echo every 3 months and heart problems worry me to pieces. I'll keep you in my prayers.
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Thx BigPeaches, I really appreciate that. For some reason I’m having lots of anxiety over this news, I think more so than when I found out it was metastatic. My tx has gone pretty well over the last year and a half and I’ve responded well and am mostly stable. You know how that goes. With the news of my declining heart function over the last 3 months especially, I just am incredibly frustrated. I just angrily keep asking, REALLY?!?! I have pushed myself this whole time to be positive and be strong, and a little part of me feels that all that is trying to come crashing down. So now, my body is a juggling act, keep the cancer under control while keeping my heart functioning at the same time. Ugh. If y’all can’t tell, I’m really needing to vent. Ha ha ha. Just have to say also, I am sooooo ready for Spring
Thx for listening again,
Jenny
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I'm sorry to hear that Jenny! I hope your heart recovers quickly this time. They tell us that our EF is supposed to improve as soon as we stop Herceptin, so your story is scary. This balancing act we have to try to maintain with our treatments is frustrating and stressful, especially when you do everything right and your body still betrays you.
On a somewhat related note, I convinced my MO to let me go back on H&P even though he's concerned about the effect of radiation on my heart combined with the Herceptin, even though it's mostly my right side that is being radiated and only a smart part of my left. He understood my concern about being off it for so long and agreed, but made me promise to let him know immediately if had any shortness of breath, etc. My cardiologist said that my heart is so strong that he only needs to see me every 6 months. I suppose I really should get a new echo now that I'm back on the H&P but I'm going to wait until I finish rads and my skin has healed a bit. Between the IBC and the rads, I can't bear the thought of that wand pressing against my skin right now.
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Hi Ladies,
Just getting caught up. Anyone experience flu-like symptoms following an H&P infusion? I didn't get much sleep the night before my infusion and I did have the flu last week, so I was tired going into my infusion. Following my infusion yesterday though, I had a fever, chills, exhaustion...I was absolutely miserable. I slept 10 hours last night, woke up to get my kids ready in the morning, then back to sleep for 3 more hours this morning. I've only ever felt a little tired after an infusion before; never sick. I'm hoping this wasn't infusion related or my new normal. I'm feeling much better now, so it only really lasted 24 hours or so. Just curios if others have experienced something similar.
TwiggyOR: Regarding Genentech copay assistance, the insurance coordinator at my Dr's office took care of the registration for me, so I don’t have a lot of info to share there. It’s worked well for me though. I don’t have to do anything. It’s listed as my secondary insurance, so after my primary insurance processes my H&P claim, my Dr’s office bills the remainder to Gentech and then I think I owe like $50. The amount Gentech pays actually counts towards my primary insurance deductible and out of pocket maximum, so it ends up saving us several thousand dollars each year as we only end up paying a few hundred of the $7,500 out of pocket max.
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MommyErin I used to get those flu-like symptoms and horrible bone/joint pain in my legs when I first started H&P, felt like I was hit by a truck. After several months my body gradually got used to it and wasn't as bothered by it, now it's mostly just some fatigue (and the ever-present drippy nose), but I do still note that if I'm tired and run down when I get my infusion the SEs are more severe. I bet the fact that you're still recovering from the flu played into more severe SEs for you this time. Hope you get some good rest and feel better soon!
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LoriCA- Thank you for your input! I’ve been on H&P for almost 2 years...19 months of just H&P with no chemo. I’m guessing the flu played a role as well. I thought I was over the flu, but the infusion was probably just too much for my system to handle. I guess I’ll know in 3 weeks if this is my new normal
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Hi MommyErin,
Good to see you posting on here! I have been wondering how you are getting on. I think this is probably a one off episode for you as you don’t normally have bad SEs.
How are you otherwise? I scan on March 6th. I’m 2 years on from stage 4 too.
Liz x
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Dear BellaTassie, LoriCA and others,
I am cross-posting our story from liver-mets thread...
My wife Sandra, being NED for past half a year (actually more not officially - 10 months as nothing was seen on scans) relapsed. What is even crazier that it is in the same left breast, and IBC... Huge shock to us, we are devastated. Our MO said that straight from the beginning it had to be IBC because "changes were so big" but it didn't show up as IBC 1.5 years ago at all... was simply detected as a big lump, ER-/PR-, strongly HER2+. We did all CT and MRT scans now, and all is NED, no lymph node involvement yet (okay, well, we're stage IV...), but spread in the breast is very fast - in 7 days breast got swollen and 1/3rd of it is red. We saw first changes ~5 weeks ago but they were minor (areola, nipple) and didn't change for weeks, and MO wanted to "wait and see". We'll have the Multidisciplinary Board meeting tomorrow, hope they will make decisions asap. It is crazy and so scary. Seems Herceptin and Perjeta does an amazing job inside (liver) but completely fail outside. I hope we still have an option not to abandon HP treatment and have some local treatment in addition, like mastectomy... Chemo after only 10 months would be really devastating, as we had 12 cycles of Taxotere, and she hasn't fully recovered yet, and we have a 4 year old boy to care about... I am sorry I post here, as I know there's a separate thread for relatives, but my wife has liver involvement and therefore I mostly read this thread. Bella, Lori, do you have any advice maybe? Would you push to stay on HP? What if they want to interrupt it and continue with chemo? Might it not wake up the liver? Ahh, I so much hate this illness, it takes everything from us...
Saulius0 -
Saulius I am so sorry to hear that, it sounds like she is going through what I am going through right now (although mine also spread to lymph nodes throughout my body this time). Seems like there are several of us finding that Herceptin has no effect on IBC, my mets were still resolving with more healed every month at the same time the IBC started running wild again. It is scary how fast IBC spreads, but mine spread even faster the first time so I'm staying positive that we can get it under control again. In my case after it proved to be resistant to chemo this time (which was my first choice because it worked so well the first time, but not my MO's first choice), we decided to try localized treatment because the rest of me was under control, which sounds like the direction you are heading. With IBC, they always want to use chemo before doing a mastectomy to try to shrink the cancer first. If she hasn't yet had a mastectomy I'm wondering if she hasn't yet had radiation? That is what I am trying now and it seems like it's working, although it took several weeks before we saw any improvement at all. One down side is that since it's her left breast, her heart would likely be in the radiation field. Since Herceptin is cardiotoxic there may be concerns about having her remain on Herceptin while undergoing radiation, but it should only be a break of about two months if everything is timed right.
I absolutely wanted to stay on H&P while undergoing local treatment because most of my mets (liver and bones) resolved on it. My skeletal mets were extensive and everyone has been amazed at how well they responded to H&P. I was afraid that if we stopped H&P for any length of time while doing only local treatment, that the cancer would spread throughout my body again.
She doesn't have to stop H&P to go on chemo, they usually give chemo in addition to it. There is also Kadcyla, which is Herceptin plus a chemo and is typically the next line after Herceptin when there is progression, but if it's spreading that quickly Kadcyla might not be a strong enough chemo to stop it fast. Because the IBC can spread so quickly, as you are seeing, you need to stop it in its tracks immediately before it does too much damage. And as I mentioned in another post, as long as the rest of her is still doing well on H&P she may not want to move on to the next line of treatment yet.
All of that aside, they will probably want to do a new biopsy. Among other things a new biopsy will show if it's still HER2+ or has changed to HER2-, which could be one reason it may not be responding to Herceptin. My new biopsy had the exact same pathology as my original DX. I hope you get some good direction from the board meeting. Let us know what you (she) decides to do and how it goes. Hugs for both of you!
Lori
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Hi everybody. I'm just catching up. MOMMYERIN - I have been on Herceptin (no P) for over six years, and I still get flu like symptoms sometimes. I have posted about this before; I am not sure there is a rhyme or reason for mine. Sometimes I am totally fine after am infusion and sometimes like you, I feel HORRIBLE for about 24 hours - literally don't want to get out of bed! Hopefully it won't happen to you the next time. Like Lori said, it could be the fact that you'd just had the flu and were a little run down.
We've talked about loading doses on this thread in the past and I wanted to report back on what my oncologist said. I talked to her about this last week during my normal appointment. I think I've mentioned that get infusions more infrequently than normal (translation; that I am supposed to) but since I have been NED for so long she is okay with it. Her opinion (I really believe she is one of the best oncologists in the country) is that there is no reason for a loading dose. She said Herceptin stays active in the body for 12 weeks... and even after that it's not really critical that one is given. She is with an academic institution (UC Health in Denver) so no reason for her to request loading dose and it's now in my "file" that I don't ever need one. I mentioned to her that several of you had said you'd been urged to get them, and her concern was that doctors/pharma in the private world might be pushing these doses when they aren't necessary because obviously, the more H/P the more it's going to cost. Maybe we have talked about that possibility before and I missed it, but wanted to update all of you.
Saulius - so sorry to hear about your wife. Sounds like Lori gave you some valuable feedback and advice. Please keep us all posted!
Hugs to everyone.
XO
Andi
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Saulius, I’m sorry to hear about the difficult time ur wife is experiencing. H&P had a great effect on my Mets but I had a local progression, but it wasn’t like the first time, no swelling or redness. Tamoxifen was added then I had a mastectomy and radiotherapy. I stayed on H&P during radiotherapy, but I suspended Tamoxifen until a fortnight after radiotherapy ended.
I hope u find something soonto slow it down and bring symptom relief.
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