De Novo Stage IV
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Also, here is a link to the Stage IV Herceptin & Perjeta thread. It rarely comes up to the front page, since there are not that many of us here. HER2+ subtype is only 15 to 20% of all breast cancer and even fewer of us are Stage IV because the H&P treatment in early stage BC is very effective at preventing recurrence.
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@harrow I am on Phesgo as well. I’ve never done IV Herceptin / Perjeta so can’t compare but I’ve had relatively no issues with the shot. My NP did say she’s seen more people reporting diarrhea with the shot but not sure if there’s any stats to back that up.
I hope everyone is having a good weekend! I have my scans scheduled for November 21st, a week after my last Taxol infusion. I’m trying not to let scanxiety consume me! I’ve been having bad right side rib pain the last few weeks that have been concerning me. They ended up doing an x-ray and all looked good there but they said unless it got worse we’ll see if the scheduled CT / bone scan shows anything. My bone mets are in my spine / manubrium so I’m scared of anything new popping up there. Concerned about the liver of course too but keep trying to tell myself my Signatera test / tumor markers are promising. Not really sure what else to attribute the pain to though so heads been spinning a bit.
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Harrow, I’m sorry, I don’t have any information on your question.
jobbibo, I’m sorry you’re concerned about the side pain. When you said November 21st, I thought to myself, that’s a month away. Nope. It’s already November. Goodness, time is going so fast. I hope for great results and a resolving of whatever your pain is.
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@olma61 thank you for the insight on your experience and the link to the thread. I will have a read through.
@jobbibo I’m sorry to hear you’re experiencing rib pain. I hope it has not gotten worse. I’m sure November 21 feels like such a long ways away. I am sending positive thoughts that your pain resolves and that your scans have great results! I hope your final two infusions go smoothly.
@kbl no worries, thank you for responding anyways!
I hope everyone is doing ok!
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kbl, denny123, harrow, jobbibo, seeq, grit_a, bsandra - Thank you for your kind replies. It especially makes me happy to be a source of hope for those recently diagnosed, as I remember being in that position.
bsandra, jobbibo, grit_a - It’s terrible that anyone has to go through this at any age, but there is some comfort in knowing you’re not alone in being diagnosed young. We’re in it together. Best wishes to all of us.
Sending my love to all!
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Since the question was asked in this thread, I just want to add for @harrow a link to the study that was done that showed PHESGO was just as effective as IV H&P in early stage breast cancer. I am not aware if any studies were done with metastatic patients, but this is the study that the drug company highlights on its website, too:
https://www.thelancet.com/journals/lanonc/article/PIIS1470-2045(20)30536-2/fulltext
Another thing I really like about PHESGO is that it does not contain “biosimilar” Herceptin or Perjeta, it is the original branded version of the 2 drugs. A lot of cancer centers had been switching up to IV-administered Kanjinti, Trazmira, Ogivri, etc. The biosimilars are what I had reservations about because they are “kind of” like a generic version of the original but not exactly.
Something to do with it not being possible to formulate an exact replica of a monoclonal antibody, which is what all of these drugs are. That gave me a bit of worry, much more so than switching to an injection form of the same drug.
Anyone feel free to correct me if I’m not explaining about biosimilars properly but that is my understanding of the differences!
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@olma61 thank you for the link to the study. I appreciate it! I don’t think H&P get switched out for anything here? At least not that I have seen or heard. They show me the IV bag before my infusion and it’s always been the original meds.
I hope everyone is doing ok. Thinking of you all.
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My Herceptin was switched to Trazmira for a few years. But when I started to have a reaction to it, I asked to be switched back to Herceptin. I am still having a reaction, however.
If a patient has been switched, they are supposed to tell us.
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Hi! I had a renal scan last week, and it definitely is showing some signs of something happening with my kidneys. Two and a half years ago I had one because a CT scan said I had hydronephrosis. The scan came back normal, so I wasn’t too concerned. I’m having no symptoms, but scans keep saying there is fluid in my kidneys. This scan said the time to peak activity in both kidneys are abnormal. I want to think maybe the cancer is in my ureters and starting to show some subtle signs. Thankfully, my kidney numbers are still fine. I’m having a cystoscopy at the end of the month. Anyone else have issues in the kidneys? I do not want to have stents in the future.
I’ve been on Orserdu one month today, so it’s too soon to tell if it’s helping the side effects so far have not been horrible
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@kbl I’m sorry you’re dealing with this but glad to hear your kidney numbers are okay. I don’t have any experience with kidney issues so far but sending positive vibes your way especially that Orserdu will start showing signs of it working.
I signed off on everything for the clinical trial I’ll be doing as long as there’s no progression shown with scans (they said if there’s anything found in the brain I can still join the study but progression can’t be found anywhere else). Had a brain MRI today which was not fun but glad it’s over with. CT and bone scan will be Tuesday, trying to stay positive!
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Good luck Bobbi Jo 😃
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@jobbibo Thank you. Just had normal monthly bloodwork. Kidneys still behaving. I’m so appreciative of not having symptoms. I hope that continues.
For the first time ever, my glucose was at the very bottom of normal. Whew. Guess I need to have more sugar. Darn. Lol
Please keep us posted on the clinical trial. I am hoping your scans come back with positive news.
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Bobbi Jo—-good luck with your clinical trial. I had a brain MRI almost a year ago. That was an experience! But I am glad that there appears to be nothing in my brain—-duh.
Denise
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@denny123 that’s too bad you had a reaction on Trazmira. What sort of reaction are you still having? Do they know why you’re still experiencing it if you’re back on Herceptin?
@kbl I’m sorry to hear there is something going on with your kidneys. I hope that the fluid resolves itself. I am sending positive vibes. I’m glad your numbers are still ok. Please forgive my ignorance - is a renal scan different than a CT?
@jobbibo good luck with your scans and the clinical trial! I am sending positive thoughts your way. I will be following your experience closely.
Is a brain MRI very different than other MRI scans? I will be having one as well and just assumed it would be like all the others. Is there anything specific I should prepare myself for?
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@harrow Thank you.
A renal scan is a type of Xray where you lay flat in an open area. The machine is above you. They inject tracer and watch as the tracer makes it down through your kidneys and into your bladder. About 11 minutes before the test is over, they inject lasix to watch it move. It takes about a half hour.
The only real difference for a brain MRI is they do put something over and around your face and head. You can still see. It’s just a little more confining. For those with claustrophobia, it’s already hard, so I’m sure being even more confined is difficult. It can look something like the picture below.
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Yes, the brain MRI has the mask. I just try to zone out and be somewhere else in my mind for that. I have had 2 of those. Glad to not do them on a regular basis.
@kbl glad to hear you are feeling okay and tests are looking a little better
Denny, when my cancer center went to kanjinti, they did tell us, but we had no choice. They told me the day I showed up for treatment that they would be using Kanjinti and that insurance wasn’t paying enough for herceptin so everyone would be getting it, then asked “Are you okay with it”. It didn’t sound like I had a choice if I wasn’t okay with it, other than to switch to a new hospital, which I did wind up doing for a number of reasons.
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Harrow, I’ve had more than a dozen Brain MRI’s and don’t mind them. I don’t care for the head cage but the sounds do good to distract me. The noise is like watching and old syfi movie while construction is going on outside.
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@harrow my reaction was shaking and body pains afterwards. I had just been dx'd with hypoglycemia, so it was thought to be because I had a snack of ginger ale and Oreos during my treatment. So I stopped the yummy snacks, but the shaking continued. Finally, a few months ago, I realized that the shaking was shivering. That was weird since I am never cold.
The pharmacist and head nurse told me that a lot of ladies have reactions to Herceptin, which I didn't know. Now before I leave my house, I take an Allegra, and I get a pre-med of Pepcid. I also take Tylenol during the IV to ward off the body pains. And I also ask for a warm blanket and a Cup-A-Soup. And that has been working. So basically I have an allergic reaction to Herceptin or Trazimera.
I had a brain MRI almost a year ago, but don't remember wearing a mask.
@olma61 I was told that I was being switched to Trazimera a few years ago. I had no problems until Oct 2022. But when I asked to be switched back to Herceptin, I was able to do so.
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Thank you everyone for the good luck! I should know by the 22nd how all my scans look / if I’m good to go for the trial. All my bloodwork indicates scans *should* look good but can’t help worrying a bit with the rib / liver area pain I’ve been having for a while.
@kbl Yay on more good bloodwork and no symptoms! Guess it’s not the worst thing to have to have more sugar haha. At the beginning of all of this I tried to swear off sugar but as time has gone on I decided that’s not making me happy and let myself have treats here and there.
@denny123 I didn’t know about many people having reactions to Herceptin, that’s good to know and be prepared for. They give me Benadryl and Tylenol before giving me my Phesgo shot and so far that’s kept me from having a bad reaction. I’m glad Allegra and Pepcid is working for you!
@harrow Like others have said it doesn’t seem too different from the breast MRI I had besides the thing they put over my head. I’ve had two brain MRI’s now, had to have this most recent one for the trial. I’m not typically a claustrophobic person but did feel a tad uneasy being confined with the head contraption. I just kept my eyes closed for most of it and tried to focus on the music they played, but honestly can’t hear the music well with how loud the MRI is. It was at least more comfortable than a breast MRI where you have to lay on your stomach so that’s a plus!
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@harrow I’ve had a bunch of brain MRIs. I don’t mind them. At my hospital, probably elsewhere too, they have a little mirror that reflects the room so I don’t feel so closed it. They give me earplugs and headphones with music piped in. It’s still loud but not that bad.
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@ jobbibo -chocolate is good for us! And the darker the better!
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Hi kbl, I'm sorry about new findings in the report, but hopeful that those things turn out to be nothing serious and next scan is able to give a better look.
superdenovo, great to hear from you and reading your post.
I have been on Elacestrant for near 2 months, and dealing with a lot of nausea- annoying feeling. my breast is getting larger each day, 'full of tumors' according to my MO! having pain and burning pain in the spot but still "standard of care" textbook does not include surgery!! and my lower back's pain started making me worry. I'll have annual MRI of spine mid December, but I'm thinking of calling the clinic to reschedule it sooner. I'm concerned about these issues and prefer scans sooner than waiting for 3 months. the last time my scans were spaced 3 months part, ended up metastasizing with multiple tumors in the liver. I do not want that again.
Hi everyone, I hope you all have a good weekend.
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((((snow-drop)))) sending hugs!
Denise
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@snow-drop I really hope that sooner or later that whole nonsense about 'but it doesn't make any difference!' goes away for de novo folks. If you are stable and they can get rid of a big blob of potential trouble in a relatively 'easy' manner, then why not? Mentally its big for the patient too. Rather an opt out rather than hoping you have an enlightened treatment team. I hope you are able to get your scans moved up, nothing worse than living in pain and knowing it and yet clinical signs aren't enough for the team to do something about it.
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I had that problem. After my dx, a spot was seen in my liver, but 3 biopsies missed it. So it was assumed to be just a lesion. I had a DMX, chemo and rads. Then my CT scan showed that my liver was filled with tumors.
If the biopsies had been accurate, my liver would have been treated immediately. I have often questioned if I really needed the DMX and no one knows.
But when a mastectomy is done, one usually has to wait for about 6 weeks to heal before getting chemo. So that downtime is what can be detrimental.
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@snow-drop I’m sorry to hear you’ve been dealing with so much. It’s hard to hear no surgery. I’ve been wanting to talk to my onc about if they’d ever consider it for me. I hope you can get scans moved sooner. I’m sending good vibes your way.
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Hi everyone, thanks to those who shared their experiences with brain MRIs. I appreciate it!
@denny123 that’s quite the allergic reaction! I’m sorry you have to go through that and glad that you’ve found something that works to help get you through treatments.
@snow-drop I hope you are able to get in for your scans sooner than December. I agree with sondraf and the surgery option, especially if you are in pain. My original MO told me that they would only consider surgery to alleviate pain. I hope they will be willing to revisit this for you. Would you consider getting a second opinion? My new MO said the conversation about surgery is between me and the surgeon, and does not include her. I’m sending you positive thoughts!
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