De Novo Stage IV
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@denny123 I was just reading the H&P thread and came across a post by MommyErin from July 2020 and she describes a very similar reaction to her infusion as you:
”Hi ladies. Anyone occasionally experience flu-like symptoms after their infusion? Normally my infusion days are a breeze, but I've been feeling miserable after my infusion yesterday...fever and chills all night, headache, and overall just blah. This is not my normal. Wondering if this is just a weird response to my infusion or if I caught a bug and my infusion made my immune response even worse???”
She didn’t get many replies but in another post she mentions how her MO suggested she try the Phesgo injection. She was last active in 2021 so it’s not clear if she was able to resolve the flu-like issues.
It’s probably not very helpful for you, but I wanted to pass it along so you know you’re not alone in your experience.
Thinking of you all.
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Dear denny123, my wife is on Phesgo for over 2 years now and she did not noticed hair loss (I asked her just now). And all in all she's 7 years now on Perjeta&Herceptin, so no hair loss at all… Hopefully your body would react better to the slow dissolving "vaccine"-like injection but I think you were on Herceptin only, so that would add a drug Perjeta to what you get, as Phesgo is a trastuzumab-pertuzumab combo… please let us know what your doctors said when you had that discussion, as it would be a very interesting switch…
Saulius
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@denny123 I hope you’re able to try out Hylecta if your MO agrees! I’ve been on the Phesgo shot this whole time and no hair loss (since being off chemo) but makes sense not to use it if you’ve never been on Perjeta. I’m glad to know there’s an injection just for Herceptin. If for any reason down the line I could drop Perjeta I’d like to look into Hylecta. I’ve seen in various groups some people drop the Perjeta after a couple of years if stable enough to do so.
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Dear denny123 - it is not that Perjeta is for EBC… it is part of Cleopatra protocol for stage IV setting: taxane+trastuzumab+pertuzumab, and when taxane is dropped, people continue with trastuzumab+pertuzumab. Sure, Hylecta would be better for you, I agree, but for example in my country Hylecta is not compensated by "NHS" - only Phesgo… good luck, and I am almost sure Hylecta will solve your problems that were more than unpleasant. Hugs,
Saulius
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@denny123 I was diagnosed de novo in 2016 and had Herceptin and Perjeta with and taxane, then continued without the taxane, which I think had just become standard care for stage IV HER2+, at least at MDA. Also, no noticeable hair loss from that but I did have some thinning later when moved on to the Xeloda, Herceptin, Tukysa combo.
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@illimae Thanks! I asked about the Herceptin shot, Hylecta. But when I spoke to my chemo nurse yesterday, she said it is stronger than Herceptin. So I asked for a dose reduction of Herceptin. Or maybe even less Xeloda.
She is mostly worried since fevers indicate that there is something wrong with Herceptin and me. And I have been on Herceptin for about 20 years.
I will find out on Monday what they say.
Perjeta is for an early dx of BC, so I am sure that I am way past that. But I did ask about it.
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Yeah, I also had perjeta at the beginning of my treatment as Stage IV de Novo and have been on PHESGO for MBC maintenance since shortly after PHESGO was developed. Including perjeta for MBC is the latest standard of care.
Anyway, hello all, just dropped in with a few updates. Seeing a new oncologist now that I have settled in at a new location in South Florida. 🌴 As I posted elsewhere, she has agreed to switch me from anastrazole to Fareston (toremifene) due to the side effects I’ve experienced from anastrazole. Haven’t been able to start yet since Fareston is on back order at the pharmacy. It’s a SERM like Tamoxifen but supposedly with a better side effect profile and was developed for post-menopausal women with MBC.
Haven’t had a scan yet, and this onc has also agreed to a six month scan and echo schedule! Unlike my last doc who was in my opinion very scan-happy and was not taking into consideration the length of time I have been stable/NEAD.
So I am pretty happy in my new place and next project will be buying a car because things are kind of spread out here (I am in a palm beach suburb) and UBER is not cheap in this case. I probably will go with an EV since my son has one and has sold me on the idea. Also, I am a Jersey girl at heart and jersey girls don’t pump gas! I’ve probably pumped at the self service pump 3 times in my entire life and do not look forward to doing it again at this stage. 😂. I also think the EV will be more low maintenance than a used gas guzzler (which is what I could afford).
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I finally had my breast surgery consult today along with an ultrasound and mammogram. The great news is that they can’t see my original mass at all anymore, it looks completely resolved. Same with my affected lymph node. I was really anxious because I’ve had pain in my breast really bad the last couple of weeks but my surgeon is convinced it’s just scar tissue / dead cancer cells causing the pain.
The not so great news is they see a ton of calcifications spanning 10 cm which my surgeon thinks is all DCIS. Because of this a lumpectomy isn’t really an option to get that all out. So, as long as my oncologist will agree, it looks like I’m going to be having a bilateral mastectomy. I wasn’t mentally prepared for that but at the same time I think it will ease the anxiety of the thought of the DCIS turning invasive. She also agreed to do it at the same time as my oophorectomy. Just waiting on them figuring out a date to coordinate!
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@jobbibo …When I was dx'd in 2002, my left breast was filled with DCIS. The tumors were hidden on both sides.
But a double is the best option, I think.
Best of luck!
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Hey all, haven't been on this thread in forever but due to this surprise Her2+ receptor gain and whiplash change in both treatment and MO outlook/approach, feel like Im starting all over again from initial diagnosis!
Saulius (good to speak to you again!) I wasn't aware of the Cleopatra IV protocol but will check that out. Currently on 6 weekly low-dose Abraxane + Phesgo shot every third week, and then they will do 6 cycles of Abraxane two or three weeks apart after a short break for me to travel home. This Phesgo stuff seems easy enough with a shot in the thigh, I asked how long we stick with it and she said as long as it works. I hope I get as long of a run on that as you 'proper' HER2+ ladies. Are there any other good studies to read about upcoming drugs or anything? My MO is an HER2+ specialist so no wonder she's over the moon about this situation, but after so many changes and failures in treatment the last year I guess Im a little wary about anything until I see some lasting success.
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@sondraf - I hope targeting HER2 will work well for you! Yes, there seem to be new drugs for us coming out all the time. Margenza and Enhertu are 2 of the newer ones, here is a 2024 article from NIH outlining current standard of care for HER2.
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC10896056/#:~:text=There%20are%208%20FDA%2Dapproved,and%20tyrosine%20kinase%20inhibitors%20(tucatinib
I know TDM-1 and Nerlynx used to be the next lines of treatment when I started on Herceptin but now there are so many newer drugs and combos of drugs that those 2 seem to be lower on the list of drugs to try if H/P fails. But I hope you get a good long run on PHESGO first, before having to move on!
@jobbibo sorry to hear about your result but hopefully the surgery will be able to clear things up for you. warm wishes for a good outcome and a speedy recovery!
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@sondraf I am back in the dark ages and still on Xeloda and Herceptin. And that is even though my Her2+++ has changed to Her2- somatic. Good luck with everything!
I talked to my triage nurse yesterday and asked if I can get my Herceptin infusion over an hour in hopes that I don't have as many SE's. Will have it this Friday.
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@denny123 good luck with getting a longer infusion duration! I hope it does the trick for you. Were you able to get any feedback on the dose reduction request?
@olma61 I’m glad you’re settling in nicely to your new home and your new oncologist. I wish you the best of luck with Fareston. I hope the side effects are lessened for you
@jobbibo what great news about your primary tumour and affected LN! I’m sorry about the lumpectomy no longer being an option. I can empathize with your disappointment. I felt the same way when I was told a mastectomy was the only option due to the large area of microcalcification and necrosis. May I ask why they’re recommending a double mastectomy instead of just a single one? I’m glad I went ahead with my surgery. Not only did the pathology confirm there was no cancer left, but two areas of DCIS were found (and removed). Please keep us posted on the coordination of your surgeries!
@sondraf I’m sorry that it feels like you’re back right where you were at original diagnosis. That must be very stressful! It sounds like your MO has a great plan in place to pivot and address the changes you’re experiencing. I, too, hope the Phesgo works as well for you as it does others.
Hello to everyone else! I hope you all are doing ok.
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Dear SondraF, uhh, so sorry you are facing these challenges again. Yep yep, Cleopatra… many protocols on HER2 side that HR people do not know and vice versa. I also pretty much know more about HER2 treatments because of my wife's diagnosis. One thing is very interesting - mutating to Her2+ is not very common and opens a lot of new treatments, so this is why your MO is so excited. And so we are. I'll say a little prayer for you tonight, so that your bad cells have reached their limits and will all die of HER2 therapies that are very very effective. Lot's of hugs and please keep us posted,
Saulius
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@sondraf The biopsies on my original tumor and my lymph node showed a small HER2+ development (+1) in the lymph node so I'm hoping that my cancer has also morphed. I understand that researchers are looking at treating low HER2+ in novel ways. RIght now I'm just on the standard treatment for ER+ cancers. I mean to ask my MO about this at the next meeting. I will keep you posted.
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@sondraf Wishing you the best of luck with the her2 treatments! I’m 6 months out of dropping the chemo and continuing with Phesgo and my side effects have been pretty minimal since then. Hoping to hear the same for you!
@harrow I’m so glad to hear everything worked out so well with your surgery! I am hoping to be in the same boat. So it was me that asked if we could do a double mastectomy once my surgeon said a lumpectomy isn’t an option. Just for me personally I have very large dense breast and they always remind me that due to that it can be harder to detect anything with screening. I guess I just want to get rid of the paranoia of having a new primary pop up. My surgeon said she supports either a single or double but understood wanting to just remove it all.
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@harrow According to the article that I read about Herceptin, the dose can not be lowered. And my nurse verified that. As to my suggestion of a lengthened infusion, she said that it might cut the effectiveness. I guess that we will see. I have my appt this afternoon, so hopefully everything will go okay.
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@jobbibo I can understand why you would choose the double mastectomy. It never occurred to me to ask and now I kind of wish I had. Although, I don’t think the surgeon would have agreed. He didn’t even want to remove LNs since they were no longer showing active. I was just so grateful to find a surgeon willing to take a chance on me, I didn’t think beyond that. I’m really happy that you have found the same and more! Sending all my positive thoughts your way.
@denny123 good luck this afternoon! Please let us know how it goes.
Thinking of you all.
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a lot going on since my last visit…
Denise, I'm sorry to hear about your recent reaction to Herceptin. If you’re feeling stable, perhaps taking a short break to allow your body to recover might be an option? I understand it’s difficult to change a medication that has been effective for a long time. Please keep us updated on how you’re doing.
Jobbibo, 2 surgeries at once, shows that your team really cares about you. best of luck. have you consider the possibility of plastic surgery during or after mastectomy?
Harrow, you are a gem! how thoughtful of you to search and find answers for Denny. I'm so glad that you got good result and you are satisfied with your MO's decision.
Olma, it's always good to see your posts. I hadn't heard about the new med, Fareston/ SERM before, i am on Elacestrant/ SERD. I will ask my MO if Fareston can be recommended for ESR1 mutation. it's good to have an MO who's willing to listen to patients.
Sondra, my HER2 status has also changed to HER2+1 now from my liver biopsy, though we don't know if the status of the primary tumor has changed. originally my her2 was negative. have you had a recent biopsy? I hope phesgo works for you.
KBL, I hope you are doing well and getting to spend more time with your grandson. how is Elacestrant working for you? My body has finally adjusted to it, so no more nausea for about 1/5 month, yay! I hope it continues to be effective….
hello to everyone, Mai, Saulius, tougholdcrow, irishlove. it's always good to stay connected and support each other through everything.
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I recently completed my radiation treatment, and at the end, the team encouraged me to ring the bell. At first, I thought they had mistaken me for another patient. I quietly told the tech, "You know I am stage 4, right?" he responded, "we celebrate it for all our patients." I thought it was just ringing a bell, but when I took off the robe, I felt a flood of emotions. no matter how hard I (we) fight, those nasty cells are still there, making my heart squeeze and tears well up in my eyes. I don't know how long I stood there staring at the bell, they encouraging me, "you can do it." when I finally did, I looked back and saw the team's eyes were full of tears. I felt understood, seeing people who don't even know me recognize how hard I fought. of course, there was also the sadness of facing an uncertain future. these feelings stayed with me for a few days, and whenever I remember that…
during the treatment, the primary tumor and my breast started swelling, but the RO was confident to continue not leaving the treatment incomplete. unfortunately, the tumor is now 3 times larger than before the treatment. some se are around like elevated temperatures at the treatment site, occasional fever, and some fatigue. my MO admitted that the treatment didn't work in the way we expected, and now we have to wait six months before considering a biopsy or possible surgery. I disagreed with radiation but would they listen? capital n, capital o. the RO is hopeful the tumor might shrink. I am disappointed and angry but still hopeful that this treatment will show some positive outcomes.
I used Maiderm lotion during the radiation treatment and it has been very helpful. I highly recommend it.
I have CT and bone scans scheduled in a couple of weeks. it's unusual for my MO to be proactive about scans, makes me anxious about the results…
on a positive note I found a dentist who made me sure that the bone loss in my jaw is not related to the medication but from old fillings. at least that's a relief despite everything else.
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@snow-drop it’z good to hear from you! I’m sorry your radiation treatment didn’t work as expected. Hopefully the scans and the re-assessment show that the tumour has shrunk and the swelling is just an unexpected side effect from the radiation. I’m really glad to hear that when you finished your treatment and your team was encouraging you to ring the bell, you felt seen, supported and understood. You HAVE fought hard and you are continuing to do so! That does deserve recognition. I wish you all the strength to keep it going. Great news about your jaw! Small wins matter too 😊
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@snow-drop So good to see you here. I’m sorry the radiation didn’t help and that the tumor has grown. Six months is such a long wait. I’m also sorry they didn’t listen to you. Seems to be a theme lately with doctors.
I’m on month eight of Orserdu. It seems to be working still, and I say it seems because I’m only going by whether I can eat, and presently I still can. I’m glad it’s working for you and the nausea has quieted down.
Speaking of my grandson, my daughter called me yesterday and asked if I’d like to come watch him next week. Uhm, yes, please. Lol. We are presently at our new lot only two hours away instead of seven, so it is an easy drive. She’ll meet me halfway, and my husband will drop me off and pick me back up next week. He’s almost five. I can’t believe it. He gets so excited to see us. It makes my heart so happy.
I hope everyone else is doing as well and has a happy Memorial Day.
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@snow-drop That is a lovely lesson about the bell. When I finished AC-T chemo (still thinking i was Stage II), I did not ring the bell. But I see now that you don't just ring the bell for yourself, you ring the bell for the wonderful team that took you through the treatment. When I was done with chemo, I said to the RN—who was like an angel to me—"how can I thank you for saving my life?" And she said, "It's our calling."' So even if it doesn't turn out the way we plan or know or wish, it's a kind of thank you. And thank you for showing me that.
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@snow-drop I recently had the same situation with a radiotherapy failure with SBRT to my hip. I don't know why it failed, I don't even know exactly where they were targeting (I had very small burns show up in areas that um, wasn't expecting) and they spent months after doing the watch and wait to see what was going on with that patch - if it was inflammation or infection or cancer or what. I kept getting the 'well its just inflamed still from radiotherapy and that can go on for four months' while my walking deteriorated and I felt worse and worse. Eventually I did get a fresh bone biopsy out of the hip a few weeks ago and that is what showed the HER2 change, but there may have also been some infection in there as well that got cleared out when I was put on a lot of antibiotics. In short, a real mess when I was expecting to have a few shots of radiotherapy and be on my way from November. Frankly I had never heard of RT failing, but it will make me more cautious and demanding of more information in the future. BTW my cancer was also making its own fevers, always at the same time of day, and always when I was just about to take painkillers. Two doses of chemo and it seems to have stopped, but its uncomfortable and I get what you are going through.
You know, no one mentioned to me anything about having to wait 6 months post RT to do something else. Instead I was told at scans in March to 'watch and wait' and I almost lost it because I was already in so much pain and housebound that there was no way I was going to make it to June before someone decided to 'do something'. But that kinda fits with the timeline you are saying here so I wonder. Ugh, I just wish the British were more communicative, it would seriously save a lot of pain and anxiety!
Funny you mention ringing the bell. I don't think we have a bell at my hospital, but yesterday I was thinking I would damn well ring it at the end of this course of chemo because its been a haul to get to this point and I want to celebrate that I made it through. Never used to think like that!
Saulius - thank you for your well wishes, I think I will stick around on this thread a bit more!
Yesterday I took my first walk around the corner and to the end of the block. Had to rest a few times and I was tired but I made it. Talk about completely deconditioned! It wasn't the most comfortable of things but I need to keep going to get back in shape, so again we go tonight. Funny how a walk to the end of the block is an achievement when a year ago it was just something I kinda took for granted.
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Thanks all, for your concern and my infusion went well! I had a pre-drip of saline, which was almost the whole bag. And then I had Herceptin for an hour. And NO shaking! I do realize that it could be different each time, though.
When I got home, I was very tired, but my BP was at a normal level, and my fever was only 99. My nurse did tell me that if I didn't do well, the next time I could have a steroid injection into my IV. So that is another possibility.
Speaking of bells….I was Stage 4 from dx, but my 3 liver biopsies missed the liver tumor. I had my dmx, chemo and rads, and then (back in 2003) the nurses threw confetti at me and sang (poor cleaners had to clean that all up). That was before bells.
Then, a few weeks later, my CT scan showed that my liver was filled with tumors, and I have been on chemo ever since. Several years ago, I lamented that I would never have another confetti party again, but the next time, the nurses gave me another confetti party since I was NED!!!
That sure was a teary-eyed experience and I never thought that I would still be battling this stuff after over 22 years.
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