HERCEPTIN and/or PERJETA Threads
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I had a helluva time trying to relocate this thread. I missed the "and/or" so I got zero hits. I looked for a member whose name I recalled who had posted some time ago and found it. A very quiet thread. It is a Good News thread mostly. Saulius, was that post from Lauriesh? I was bowled over when she wrote she had been NEAD for years and off treatments entirely for several years.
Peoy: how does any MO come up with something as precise as 57 months? 56? 65? In any case, yes - there are many HER2+ ladies out there still chugging along.
Olma: a 5 month break and still NEAD. Rejoice!!!
arc66: I think it is Perjeta that has given me a permanent rash over my eyebrows, but it is pretty minor, My back gets itchy itchy itchy and I end up rubbing my back up and down on a door frame like a bear against a tree. But I have always had a back prone to itch. Too hot showers every morning maybe? Taxol left my three little toes on my left foot feeling like they were encased in bandages but then well into just H&P (2 yrs?) I started to notice increased neuropathy in both feet. I saw an neurologist for an EMG. Sensory peripheral neuropathy. It feels like I am walking barefoot on wet sand. It affects my gait, just a bit. I list a little to the left. After reading BestBird's stuff, I decided to try Alpha-Oleic Acid. My MO was skeptical but said it wouldn't harm me. I have started to notice some improvement. Even if it is placebo effect I don't care. It is working. I also bend my toes as far back towards the top of my foot as I can. STRETCH. I do that sitting on the couch watching telly. It has only been a few weeks so I'll let you know.
I don't mind the infusion time. For me it is quiet time to put up my feet and read. No TV's, CD's playing, household noises. Getting there is under 30 minutes if traffic on the bridge is normal. My H&P are 30 minutes each. Add in my weigh in and then waiting for the pharmacies to get the bags ready it is about 1 1/2 hrs. max. at the centre.
Hi to the rest of you H&P'ers
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Dear Elderberry, nice to be hearing from you!:) Did you mean this thread: https://community.breastcancer.org/forum/8/topics/...?
Saulius
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On that topic, I had gone to twitter to see if I could find the lady who was off treatment for 34 months and I did find someone. I noticed that this is was in the tweet she was replying to (a report from Kaiser researchers re the discontinuation of HER2 treatment in long term HER2+ MBC survivors)…..
“….SABCS abstract from Kaiser researchers re discontinuation of HER2 treatment in people on long term Herceptin. …….#Embrace event”
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Hi elderberry
The median overall survival is 57 mths based on CLEOPATRA trial (1st line treatment THP). Since then, 2 more drugs are added, Kadcyla and Enhertu. Perhaps it will add to the overall survival? I don't know.
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saulius: I looked for Herceptin and Perjeta and variation and just got texts from posts that mentioned HP but not a specific thread. It was HERCEPTIN and/or PERJETA that was the proper hit. I missed the and/or part.
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Dear Elderberry, it is great now you are here! Saulius
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8 years down and in to my ninth on first line cleopatra. Lots of new drugs available since I went metastatic in 2015
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Hey all….I’m still earthbound, although I haven’t stopped in to this site for awhile. All the notifications in my email box made me click back in. Glad to see everyone on this thread still earthbound too…😀
I am still on anastrozole + PHESGO every three weeks, just completed scans and echo, everything remains stable and clear. A little miffed that I have a new doctor who wants scans and echo every three months, I had been on twice yearly scans with my other MO for the past 3-ish years now. Maybe she will relent after a few clear ones? I hope so. That’s what I get for living the nomad life, haha.
I edited my most recent post above (about discontinuation of HER2 treatment) to add back the images, I see the new forum update had deleted them.
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Dear Olma, nice to hear you, and even nicer that you are doing well! Do you think if it continues like that you could also go for discontinuation, I mean, are you considering that? Hugs,
Saulius
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My Onc is a "scanner", I have to get them every 3 months also even though they have been stable for 4 years now.
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Hi Saulius, hugs right back to you and your wonderful family. Yes, I have been thinking about discontinuing, I contacted Dr Heather Parsons about the STOP-HER2 study and she put me in touch with the trial coordinator, they have just started recruiting. But ultimately, I am still afraid to stop H/P long term. Even though my little drug holiday did not harm me, apparently, and I would love to be done with the frequent visits to the cancer center and the risk involved — the cautious side of me says wait and see what kind of results come out of these studies.
There is a similar study for HER2 MBC pts in the works at University of Miami in florida which has not started recruiting yet. Maybe I will wait for that one.
BigPeaches, thanks for chiming in, I do feel like this doc has a “doing too much” approach compared to previous ones, they are requiring 6 tubes of blood at every infusion too, previously I would get a finger stick only on alternate visits and then three tubes on the next visit. Annoying and I feel like unnecessary, I don’t know whether to think it’s a money grab or just an attitude of being overly cautious with this place. Really glad I bought my supplemental medicare policy though.
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Dear Olma, yes, I completely agree that it is a very brave option… and a stellar understanding and knowing of yourself is needed to come up with such decisions. I still feel it is a great opportunity to be both in clinical trial under supervision, and an opportunity to start a new life, a life of someone who is considered to be "cured". What a path these people in this clinical trial may lay for future NEDsters! Best of luck for decisions in the future - we are with you on all roads. Hugs,
Saulius
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Wow most recent post in this thread is from one year ago! 👋 @bsandra
So I have updated other threads a bit about my new oncologist and treatment plan but I came to this thread to say: I am getting a Signatera CTdna test at this new location. This is the test being used in the STOP-HER2 trial to try to see if results correlate with long-term remission for HER2-positive MBC patients. One of the sore points with that trial for me is that Signatera would be given by the trial doctors but my results would not be disclosed to me by them. So I could not know if I had no circulating tumor DNA or not.
Now, the Miami study I mentioned is starting to recruit (FREE-HER) I gotta love that name 😀. FREE from trudging to the cancer center every 3 weeks for life! And it looks like they are ONLY accepting patients with negative CTdna. So that seems a bit ‘safer’ if you will.
Also, if I were to volunteer for the Miami study, I will already have my Signatera results from my own doctor.
This is just me mulling things over a bit, I have not contacted the investigators for the Miami study yet I am only repeating what I read and understand on clinicaltrials.gov Also, I just got the blood draw for Signatera CTdna this week not sure how long the results will take.
Hope all my fellow Herceptors are doing well! 🌺
Here is a link to FREE-HER.
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Dear olma61, so nice to be hearing from you!:) Well, I am surprised I did not know "Free-Her" - another trial along with Sappho and Stop-Her2. Seems like the trend is getting momentum and we finally will be able to witness something that was for so long expected:) So… have you thought of participating in the "Free-Her" study? I know how brave you are, and see the end date is 2029, so you still have time (many years, indeed) to think about it:) We are doing well here, constantly checking in on this thread:) Hugs,
Saulius
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@olma61 I missed your update on this thread. Did you ask your new doctor for the Signatera CTdna test or was it offered to you? Is it a test someone could get on their own? When I was first diagnosed, I asked about genetic testing and was told I didn’t qualify…whatever that means. So I don’t expect them to offer anything like what you’re doing. Regardless of what you decide, I hope you receive a negative test result!
So if the trial is successful, the idea would be if you have a negative Signatera CTdna test result, a patient could potentially stop treatment? That would be incredible! Scary, but incredible.
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I haven't been on the site for a long time, but was so excited to read these posts about these new trials for stopping treatment potentially. I'm 8 1/2 years on first-line Cleopatra treatment as well with stable scans every six months. I'm not NED, but there has been no progression in that time since stopping Taxol after the first 16 weeks. I'm a little scared of the idea of dropping treatment, but I sure wouldn't mind not having to coordinate my life and travel around the every three weeks to the cancer center. I'm daring to dream though!
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I got my Signatera results this week - negative!! No circulating tumor DNA detected. So, I’ve been trying to get in touch with the study coordinators for FREE-HER, I’ll be calling them this week.
@dghoff - yes, it is still a very scary thought. At least doing it in a trial, there will be close monitoring. Scans and continuing ctDNA testing too, I believe.
@harrow - about the Signatera test - with my new oncologist, no I did not ask for it. We were discussing my history with the conventional tumor marker tests and I mentioned that they dont seem to be very accurate for me, especially since, before starting treatment, I’d had all normal results on CA15-3 and CEA tests with a 2.1 cm palpable breast tumor and already advancing mets. So she suggested doing a Signatera test. One of my previous oncologists (when I was in Puerto Rico in fact) was very open to doing the Signatera test as well. Although we did not get that far before I moved on.
You mentioned genetic testing - do you mean the kind where they test for hereditary genetic mutations? There are different types of “genetic/genomic” and cancer DNA testing available now. There’s the testing for hereditary mutations, there is testing for “somatic” mutations which are those that happen during our lifetime. “Next Generation Sequencing” like Guardant 360 and Foundation One tests for these somatic mutations and can help zero in on which treatments may be more effective for us. Sometimes doctors don’t want to do the second type of test unless you are having progression and they need to find a more effective treatment for you.
The Signatera type test is looking for tumor DNA that may be circulating in our blood. The traditional tumor marker tests just look for proteins that are commonly present in a person’s blood when cancer cells are present.
There’s also a circulating tumor CELL test which looks for actual cancer cells in the blood, I think that test is called CellSearch. I had asked about that Cellsearch test when I was first diagnosed and my doctor said it wouldn’t help her choose a treatment so it was not needed.
I never even had Next Generation Sequencing until last year, the doctor wanted to do it after my 6 month break from PHESGO in case I had progression. And yes, like you, I was told I didn’t need hereditary genetic testing at first too. But I joined a study a few years ago and got the testing through a study at UPENN. I posted about it here a couple of times, I think the study might still be running because I’ve seen a post from the mods here not that long ago. I didn’t have to go in person, it was all conducted online and I sent in my saliva sample by mail.
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@harrow here is the hereditary genetic testing study I participated in, looks like they are still recruiting in case you are interested. They also provide you with compensation for your time in the form of a gift card -
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@dghoff I find your story so inspiring. I hope to be in your shoes, still on my first line treatment, in 8.5 years. I feel like I would be nervous to stop treatment as well.
@olma61 amazing news that your test result was negative! It sounds like you are considering pursuing the trial to potentially stop treatment. Good for you! Please keep us posted in how that goes. I hope you are approved to stop, if that is what you decide.
Thanks for all the info about the different types of genetic testing. I’m not sure what mine is - it’s a blood test for breast, ovarian and prostate cancer. They said I would be contacted by a geneticist either way so I will ask more questions then. I’m not in the US so I don’t qualify for that program, but thank you for sending the link!
Edited to add that I don’t think my MO monitors any markers for me. I’ve never seen anything that resembles CA15-3 and CEA on any of my bloodwork results.
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Dear all, what an interesting topic you guys are discussing here! My wife Sandra also has reached 84 months (7 years) on the first line treatment and NED, so these topics are very very very interesting to us:) Hugs, Saulius
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Hi all! It’s been a while, and I’ve so enjoyed reading the updates. I just had my 6-month scan review and still NED! 🎉 I get Phesgo every three weeks and am tolerating it well, but stopping at some point is definitely on my mind. I’m 7.5 years out from diagnosis now, so maybe when I hit the 10-year mark?🤞🏼 I am seriously considering removing my port (which I only use for labs and PET scan) in the coming months (purely out of vanity 🙈). My oncologist is fine with it and would be ok moving to less frequent labs as well given how well I’ve been doing. Has anyone opted for port removal and/or less frequent labs? Glad you did it? Thanks!
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Dear mommyerin, 7.5 years, what a great achievement! My wife is exactly the same, 7.5 years, and she is NED for some years now. On Phesgo too. So congratulations!:) Hugs, Saulius
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Hi mommyerin, Congrats on the long time being NED! I have had no progression in my 9 years since diagnosis. I got rid of my port about 7 years ago (one of the incisions near the neck tube started to open so I had to remove it and I chose not to replace it) and it was the best decision ever. I hated the port so much and I just lived with getting an IV every three weeks until I was able to switch over to Phesgo. I don't reqret it a bit and I get labs only once every 3 months, so it's just not a big deal. I say go for it!
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bsandra- congratulations to your wife as well!
dghoff- that’s awesome! I’m really excited about getting it out now 🤗
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