TRIPLE POSITIVE GROUP
Comments
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We get subcutaneous Herceptin here in Europe, I believe in most countries here. It's an injection of about 10ml. The nurse injects it in my thigh muscle - well, not in the muscle, under the skin on the thigh. I swear I don't feel a thing. She injects it slowly and checks the time to make the injection last for about 8-10 minutes. It's really convenient and I'm glad I don't have to stay for an I.V.
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Jaboo, isn’t that interesting, I wonder why US just approved?
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Interesting, JaBoo. I think I read 4-5 minutes, alternating thighs. I do wish it had been available for me but at least I only have three left.
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Mactaz, no idea... it's given as an injection here for years, I think...
Ingerp, yes, the nurse said to me I will receive it quicker later, when I don't get any reactions. The first injection was carefully checked to last for minimum of 10 minutes. Yesterday was quicker. I think the next one will be even shorter. But I still have to stay in the waiting room for about half an hour afterwards before I can leave... They want to see we don't get any delayed reaction.
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Hi - I've had conversations with 2 MO's about the SQ Herceptin before it was approved, as I usually am in Europe a lot for work and effectively lived there til all this happened and I came home to the US for treatment. I expect when I go back the Dr's there would want me to switch over to SQ, and so I've asked about efficacy, switching back and forth, US views on SQ etc.
Both my MO discussions were constructive on SQ Herceptin. Both MO's are very "cutting edge" types and open to dealing with this stuff - as they have to be given I don't sit still much usually due to work - so we have to think ahead for when I'm a continent away from them again!! There is at least one study on switching which saw no detriment to changing over from IV H (which I am on now weekly with my Taxol, just finished 6/12 - yey!).
So once I'm done with T/H weekly, have a couple of IV Herceptin only treatments here (they want to see if any reaction plus I'm doing my reconstruction here before starting work travel again), I'll likely be a switcher to SQ and can report back. The MO administering the current regime has talked to colleagues in London as well as discussions she said in San Antonio and has no issue w/me switching, though she wants to see any reaction issues first and coordinate with them on that before I'm allowed to change over. So we plan for further discussion in a month or so when the end of T/H is in sight!
It doesn't seem like anyone is in a rush to start using it here but the approval is so recent I expect it will gain acceptance from here - for Insurance co's, I've heard an injection is *much* cheaper than time in an infusion suite, so I would would think if only for that, there will be some interest in having people switch.
On the T/H front I've been so lucky w minimal SE's ex fatigue, and amazing results fm cold capping. Also an oncology dermatologist prescribed Bimatoprost ("Latisse") and I've used that on eyelashes & brows diligently - haven't lost any lashes and almost no brows. To be fair I haven't noticeably lost any body hair anywhere at all either - so it could be I have very stubborn hair! Certainly my husband suggests stubbornness might be innate physically *and* mentally.
I can't argue that one. My skin has been terrible, but that seems to have gotten better with some topical prescriptions I was given as well and I'm on all natural skin care, minimizing makeup etc. to try to keep the T/H cystic acne at bay as it's painful stuff and the first few have given me some new war scars to add to the bmx fun. I know it's often the tough situations you hear about but for those starting on this road sometimes things go well too, fingers crossed they continue to for me after the rocky start on the diagnosis front!
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Boogirl, I believe you should have no issues with switching. You see we get Herceptin as an infusion also here in Europe - when we get it with chemo. So I was receiving Taxol and Herceptin as IV with all the premedications. Once we move to the Herceptin only, we get it as an injection without any premedication. Well, I am just describing how it's done here, for information....
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I planned on talking to my MO about it when I see him next Friday. There's a big Breast Cancer Oncology thing in Orlando FL coming up and I know he's going to it. He's very up to date on the newest treatments so that's why I want to discuss it with him.
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Jaboo and boogirl, that does sound promising. I will ask my OC about it.
Has anyone seen something similar for Perjeta? I'm taking both so would be nice if could have injections for both then could just get rid of the port. One more step towards normality.
Just found an article on Perjeta so added to my comment...., “Roche is also developing a fixed-dose subcutaneous combination of Herceptin and another of its drugs, Perjeta (pertuzumab), with a submission for approval targeted for 2020.“ Not sure others are gett8ng both but doesn’t look like it will be approved until next year at the earliest.
Thanks Ingerp for posting this
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Boogirl I’m pretty sure I read in one of the studies that it was approved even for people who had been doing IV Herceptin, so I gotta think switching or even going back and forth would be okay. And I’m sure this will become the norm as soon as possible, *but* the nurse I spoke with talked about a relatively long lag between FDA approval and general implementation. They’ll have to manufacture a lot of it, and train the nurses on administering it, and she even said something about other companies getting some time to develop a generic (although I doubt that’s the case here). I don’t know if that means six months or a year but almost certainly not in time for me to benefit.
Mactaz I haven’t heard about anything similar for Perjeta, but who knows—there may be clinical trials going on.
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Ingerp, I did find an article where they are doing trials on Perjeta but earliest is probably 2020. They also talked about Kadcyla injections with approvals anticipated 2022.
https://www.biopharmadive.com/news/roche-fda-approval-more-convenient-herceptin-subcutaneous/549507/
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This really gets me to thinking - what will happen after BC diagnosis in, say, fifty years? Will the people just get, like, 4 injections and be cured? And are they going to say with awed faces "hey, I've seen a documentary and people were getting something called chemotherapy that was very awfull and poisonous and they even got radiated, would you believe that?"
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JaBoo I do think there will be more targeted therapies going forward and treatment will get gentler. Reminds me of the Star Trek episode where Bones is decrying how awful medicine used to be—they used scalpels! How barbaric!! Still—it’s better now than it used to be and I’m grateful to be getting treatment in the 21st century.
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I have a feeling that someone on this forum has been getting the shots - in Europe maybe or part of the clinical trial. Hopefully, whatever treatment we've gotten, there is something better around the corner.
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Hi Everyone- I've been so exhausted, I have a lot of catching up to do. Lot of interesting posts. I posted last I think about how I had tried Arimidex and had such severe SE's (the Itching Rash did it) made me stop and MO put me on Tamoxifen - which I havn't started yet. It seems that the Arimidex triggered my Auto-Immune Diseases and I'm waiting for my Flare up to die down.
Tresjoli - thinking of you -best wishes
Nanatte - I had very little side effects taking Herception only except the annoying drip drip of the nose and more important, My Heart Eco I was having each month showed a decline (not sure of the technical word for it) but I had to stop Herceptin 3 times because my heart was pumping too low. On my day of Herceptin my legs felt heavy and I was more tired than usual.
Paloma - I had just the opposite - I had constipation, and would take too much laxatives which turned into diarrhea, which Imodium worked."
LaughingGull - I believe we have twin MO's. Mines an *ss. For those who havn't heard my adventures, I'll give you the short version. He told me that he didn't believe in SE"s with chemo because he's THAT GOOD. But I had no other choice, unless I went to another hospital. About NERLYNX. My MO sprung this on me during my last Herceptin dosage. I immediately got on the Facebook Nerlynx private thread and was not happy with the posts. Most post were people like myself looking for information - the Facebook page I Believe was put together by the Manufacture "PUMA" The other posts were how bad the diarrhea was. But as reminded, its usually only the people that have bad SE's that post - The ones that have no issues don't post. After my episode with Arimidex, he agreed with me that I didn't need to take Nerlynx. But one hint - most everyone on that site agreed it was better to start with 2 or 3 pills a day then work your way up to a total of 6 a day for 1 year.
I saw an article that said Cannabis blocks the Tamoxifen from working. That is horrible news if its true.Take care All, Rj
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benign results whoop whoop! Thank goodness! Not happy Aunt Flo has apparently returned...but so happy it is not cancer or pre-cancer. Stupid tamoxifen....
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tres - yay!!!
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Great news, Tresjoli! What a relief.
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oh, congrats, such a relief! 🌼
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So happy for you Trèsjoli.
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tresjoli so VERY happy for you!! Congrats
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Tresjoli!, congrats - so happy for you.
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I just for my surgery date for mastectomy on left and whatever they call it on right (no cancer there) and temp implants to be installed. April 2nd .... so scared now that it's all in my face again. But at least now I'm informed which is better than I can say I was in Oct 2018 when this journey all began
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Tresj, Great news... I'm still starring at unopened bottle of Tamoxifen.
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Yeah tres!!!
Rljes—just pick a date. How about April 1st
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Tres - what a relief!
nanette - surgery for me was a breeze.
rljes - sometimes the anticipatory dread is the worst part. I vote you jump in ASAP. It won't get any better if you don't.
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Nanette the wait for surgery was the worst, my mind just kept spinning on questions and what will it be like. I will tell you my surgery was nothing like what I had built up in my head, much easier. The one thing I would discuss with your anesthesiologist is a nerve blocker, Pec1 and Pec2. I got this right before surgery and the pain was minimal when I woke up, it really helped.
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tres, great news !!
I have another question , when do you triple positive gals start tamoxifen after surgery ? I had neoadjuvant chemo followed by surgery in mid January. My dr forgot about tamoxifen ( I guess) until I saw him last Friday. Then he ordered blood test and the result is supposed to be back Monday. I still haven’t heard anything from him yet. Is this ok to start tamoxifen that late
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Hi Hongh, hope you are doing well. I didn’t get tamoxifen but did get prescribed anastrozole (Arimidex). This is also hormone therapy. I started on Feb 26, a little over two months after chemo finished. Also my targeted therapy of H&P started 3 weeks after chemo and will continue through August. -Our journey has been running along the same path, I would think you would start some time soon.
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Hi MACTAZ, I am following this site and glad to see you are doing well. Yeh we are almost following the same path here. I finished my chemo end of November, and surgery in mid January. I started H+P 2 weeks after surgery, will have H+P till September. I am doing good too and will go back to work next month. I have a feeling my Dr doesn’t care about me since I have pCR, he didn’t notice that he skipped one of my echo test and the infusion center almost won’t let me do the Herceptin last time. Now he almost forget about tamoxifen last Friday until I mentioned it.
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hongh - yes, you can start anti-hormonals any time after surgery, and some oncologists wait until post-rads if that is needed post-surgery, so you should be fine. I would actually be more concerned about your doc forgetting, than when you are starting...
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