HERCEPTIN and/or PERJETA Threads
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glad to see these posts about the Herceptin shot. I recently switched to a different doctor at a different cancer center and I asked about the shot. They do use it there, and if my insurance approves, I will be getting it next appt. Will still do perjeta but any minutes that I can cut off my visit feels like a win.
If the insurance disapproves andI have to stay on infusions, at least I will be getting trastuzumab at this new place, not kanjinti, so that's also a win for me
I will update to share experience if I do get the shot three weeks from now
Stay safe from COVID, everyone!
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Hi Everybody,
I just had my tumor marker (15-3) go up by 7 points since the last reading 3 months ago. It is still well below the 'normal' threshold. I have been on h and p for almost 1.5 years.
People who have 15-3 markers that work for them, what is your typical range? Do you notice anything that causes them to go up 'slightly' (5- to 10 points) like allergies, a cold/flu, or inflammation?
I am not overly concerned but it is comforting to here from other people that are on h and p and have tumor markers done.
Thanks for all of you support!
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Dear Bella, wow, I am excited to hear you use Plaquenil, it is suspected it can also work anti-cancer (beyond the purpose fro what you use it), and is in some clinical trials with chemos. Keep us posted about your situation, I believe many good things might come out, as well as improvement in your arthritis. If Sandra stays NED for longer, we might ask our doctors about their thoughts to leave her on Herceptin only, as some people have done here... Saulius
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Hi all,
I haven't been on Perjeta for several years because of the side effects, and recently switched to the Herceptin injections. As Liz mentioned, I find them to be slightly uncomfortable... some redness and swelling, but love the fact that it takes 3-4 minutes and that I am in and out! Very "easy".
LA212 - my tumor markers fluctuate quite a bit and sometimes go out of the "normal" range even though scans show NED. I have found that any sort of inflammation - cold, allergies, more recently some lower back issues that I was having, etc... really affect mine. They are anywhere from 25 - 49.... usually in that range. Even though I have been having them done for 8 years and should be used to it, it is disconcerting when they go up! Hope that helps!
Hope everyone else is staying safe and sane. I have tried to embrace the Corona Virus downtime, and having my college aged kids home with us again, but I am getting a little tired of it and am ready for things to return to normal, if that is even possible.
XOXO
Andrea
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Hi LA212, I so understand the feelings around tumor markers... Most people I see on the boards report no actual changes when their numbers fluctuate, but unfortunately (or fortunately) my numbers are super sensitive to what's going on in my body... My CA15-3 have always been under 15 while stable or NED, and then, as happened recently, as soon as they jump to over 20 mild progression was seen in my liver... The reason I say perhaps fortunately is that my doctor has been able to stay on top of things very well over the past 3 and a bit years, keeping the tumor load very low... I've had SBRT to the liver, which worked very well, two Taxanes and off course Herceptin and the anti hormonals.. Perjeta and Kadcyla have just been made available in my country, for which I'm super grateful to God...Anyways, hope with all my heart your increase is a blip, but if not, early warning is not a bad thing either... Keep well
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woo hoo! I did get the Herceptin shot last week plus my Perjeta infusion. Doc says a combo shot of H and P is close to approval in the US, maybe in the fall.
It stung a little going in but no after effects. I only feel soreness if I press right on the area. Nurse told me we will alternate sides, left / right upper thigh.
Postponed my April PET scan, will be rescheduled for next month. Hopefully, this intermittent shoulder pain I have been having is not cancer related
stay safe and sane everyone xo0 -
"Doc says a combo shot of H and P is close to approval in the US, maybe in the fall." This is great news. I went off Perjeta after nearly 6 years and switched to Herceptin injection. I feel much better but would be nice to have the option to get injectable Perjeta.
LA212 my MOs have always used tumor markers for me. Ca-15 is usually around 10 +/- 5. It went up after knee surgery but then down again.
I wanted to share a recent experience I had with insurance denying a scan. My new MO wanted me to have a PET scan and I finally agreed (I haven't had many since the tumor markers seem reliable). Her office put in the request and it was denied. I called her and she said she contacted the insurance company and they would only approve CT and bone scans. Well, then I got the letter from insurance with info about how to appeal and it said my diagnoses was "Breast Problem". Hmm, that's odd since I don't have a breast there anymore. But I do have mets. Luckily I have a surgeon husband who gets scans for his patients all the time. He said, "I wonder what they used as a code. Someone doesn't know how to play the game." So then I called the MOs office and talked to her assistant and asked for the exact wording and the code they submitted in the request. First she said: I can send you the code and it just says breast cancer but it's also submitted with your files (or a summary?)--they would have looked at that. Why does it say breast problem? "Oh, they try to make it so you can understand it." (By now I'm weeping). I talked to my MO and she said well, CT +bone scans are standard. Which when I googled it it looked true enough. But I've had PET scans since mets. I hung up, talked to DH and called the MO again. I told her assistant she needed to contact my MO and that they need to submit a request for a PET scan for someone with Liver Metastasis from HER2+ breast cancer. The code needs to indicate that. Everything needs to say that. Sure enough, 30 minutes later I got a call with a new appointment time for a PET-CT scan.
My DH says his attitude about his patients is he must be vigilant. And we need to be vigilant about our care. I've had few problems with care in this journey but scans or drugs denied? Can be simple as someone not knowing how to play the game.
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Hi Miche
Glad you managed to get the PET scan. Just goes to show how important wording can be for such requests.
Your post also caught my eye as I am 3 years on from a stage 4 dx and 2 years NEAD. I dropped Perjeta recently due to Coronavirus. I did have the option to continue on HP, however felt that the Herceptin injection only was safer on this climate. I’m in and out of the hospital within an hour.
Liz0 -
Hi Miche - that's super helpful info re: the PET scan. I was denied for one three years ago, and they will only pay for the CT and bone scans. Maybe they just aren't putting in the information correctly! I should talk to my onc about it.
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Liz, I stayed on Perjeta for 5 years because every time I suggested going off of it my MO almost cried. She was scared because I had liver mets and I was one of her HER2+ success stories. I did take a few breaks from both drugs, up to two months. When I finally took a break from just Perjeta and realized that was the one causing the side effects I stayed off of it knowing I can always go back on. Good on you for 3 years out--a good response is good.
DG, I have Presbyterian insurance through my husband. He educates his assistants about how to code and what to say so he gets approval within minutes (for me sometimes it takes a week). We just need to remember the insurance companies exist to make money off of us.
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I’m sorry if this has already been asked ... do you still need the Neulasta shot when doing only Herceptin and Perjeta?
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Dear MNSusan, no, you don't neen Neulasta while on HP, however, HP can cause some "blood" side effects, like low RCB, PLT, NEUT, but these rarely are severe in comparison with chemotherapy... Saulius
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Thanks. I feel pretty good until the Neulasta Onpro goes off. I’m glad to hear I only need to do it one more time. That said, my blood counts have been great so I know it works.
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Hi everybody. I am on Herceptin Perjeta for the last two years (since my last chemo cycle. NED since then). I was wondering if there are people being NED with this combo and if has anyone stopped these medications even though there were no SE. My onc is not very clear and I feel he wants me on HP forever (well as far as it gets). Any advice and especially any optimistic story would be great to hear.
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tzoul, I don’t have any experience yet but my onc said I would be doing H/P “for as long as it works.
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tzoul - my oncologist had said there is not yet a protocol for taking exceptional responders / survivors off of Herceptin. So, I think it is something that is between individual patients and their doctors.
They have seen a significant number of long term survivors, possibly “cured" , from the CLEOPATRA study, and as it says on this page, the question is when to stop treatment
My own feeling is, if I get to 7 or 8 years NED like the women in that study, I will talk to my doctor0 -
Thank you so much for your replies!
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Hey, all. Susan in DC. Diagnosed HER2+ de novo mets to the liver in 2012. Taxol and Herceptin, then just Herceptin until it stopped working after 18 months. Then Kadcyla for several years until started having reactions. Now just on Herceptin and Perjeta.
Probably have scans soon and scared because have painful spot on rib for about 2 weeks. Herceptin tends to stop working for folks after bit. Is there a similar pattern for H and P?
Btw, I have a friend who has had metastatic HER2+ breast cancer for 17 years, on Herceptin entire time. She'll stay on it til she dies, likely. If it works, why not.
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Dear Gonegirl, uhh, you did very well for 8 years, your blog was always one of my inspirations, and I believe you'll do well further, like your friend. I think your friend is an amazing example how great Her2+ therapies are, and more and more very effective ones are coming. Just wanted to encourage you. Please keep us posted with your results, which I believe will be good! Saulius
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Saulius. That is very sweet to say. Cancer is one of those things that goes bump in the night. I really appreciate your kind words. I'm hoping this scan goes well. Here's to everyone's streak holding. 😀susan
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Best of luck Susan and thank you for your posts. I was Dx with oligometastatic Bc in 2017 and was on HP until April 2020.
I have currently dropped P so that I can have the H injection during the Covid pandemic but will pick it back up by the Autumn I think. I’m currently NED. Have also stopped Letrozole because of terrible joint pain.Liz
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jackboo. Did they remove the original tumor. Oligometastatic is the place to be. Those folks tend to do much better.
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Hi,
Just curious, anyone else on Herceptin and Faslodex or previous experience from this regime ?
I started this combo last week.
Meja
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Hi Susan
I had a 2cm tumour in a LN in mediastinum chest. Surgery or rads not possible as it was too close to major blood vessels.
You've done really well and I'm sure will do so for a long time. Horrible, just horrible waiting for scans and results.
L x
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Hi, I'm looking for some advice. I have had some small progression to my bones. My breast tumor is triple positive while my bone tumors are HR+ HER2 neutral which is like a very weak + so I am told. My breast tumor has been stable for 5 years. I am currently on H&P and Letrozole. They want to switch me off H&P and put me on Kadcyla only. Why would I do that when the pathology report says that bone estrogen receptor is 98% and I'm having progression in the bones? I don't understand why I'm being switched off Herceptin and Perjeta if the breast tumor has been stable for 5 years and is stronger HER 2+. My local Onc said that Kadcyla is 2nd line treatment and if I went on Falsodex that insurance would probably not approve Kadcyla if Falsadex failed. I don't really understand this as H&P is the first line treatment for HER2 +, followed by Kadcyla while Falsodex is for Hormone +. He said after Kadcyla there are no more options for HER2 + so wouldn't we want to make sure that H&P failed before switching to Kadcyla since I would not be able to go back to H&P? If I was on H&P and Falsodex and had progression then we would know that it was most likely the H&P that failed and would switch to Kadcyla along with Falsodex. I asked Local Onc if I was on Kadcyla and Letrozole and my next scans showed progression, would Falsodex be an option and he said yes. I asked in one of my breast cancer groups if there are any women on H&P and Falsodex and there are. I'm just trying to understand all of this as it is very confusing to me and I want to be confident in my treatment plan moving forward. I hope this makes sense. I'm just looking for thoughts, advice and similar experiences. If you read all of this, thanks so much.
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No direct experience here, other than being on H&P with arimidex. but a few thoughts -
Do you have a second opinion on this? Have you been to an NCI / NCCN cancer center for consultation?
Is radiation to the bone an option? If it is just a small area,. that IS something I have experience with. Happened to me last year and we made no change to the drugs I take, just did radiation to one vertebrae and I have been NED since.
There are new treatments now for HER2+ bc other than Kadcyla.
I would get a second or third opinion from a major cancer center, if possible.
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Different topic...just saw this in the Breaking Research thread. At home treatment is something I think is very do-able for Stage IV HER2+ patients, especially now with sub Q H&P on the horizon. I would love to do some advocacy for this!
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Hi,
Thanks for your reply Olma61. I actually go to MD Anderson In Houston. I’m hoping my Dr calls tomorrow. Usually she will confer with her peers. Neither of them suggested radiation. I’m not sure I’d it’s an option.
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Best of luck with whatever the next tx turns out to be. Maybe ask if radiation would be appropriate? I would!!!!
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Hello met sisters
I am currently on herceptin and perjeta and am stable, however, my MO called today about my echo. My EF is declining each echo. I am now at 45. I started at 58 I think. Anyhow she is stopping my treatment and sending me to cardiologist to see if I should be put on "heart protection medication".
She is hoping that taking me off one or two treatments my EF will come back up. Has anyone been down this road?
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