TRIPLE POSITIVE GROUP
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Anyone here stage IV and has done Enhertu?
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goldie - Hey you! I have not seen any discussion on this particular thread about Enhertu, but there is a thread specifically for it - I don't know if you have seen it - I had to go back a number of pages to find it - so I am linking it for you below.
https://community.breastcancer.org/forum/8/topics/874848?page=16#post_5765556
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Thanks SpecK, I have looked at it, but just saw this one pop up in the "active" threads, and was just reading through. I started way earlier on pages and saw some on Enhertu. I will recheck the thread you mention. I know Illimae is on it, I can always ask her too. It will be my next line of treatment, sometime the end of Sept. I'm going to MI to visit family for 2 weeks and MO doesn't want to start me until I I get back.
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I stopped Taxol after 8 rounds because my neuropathy had gotten so painful. I took large does of gabertentin for several weeks and then tapered off. I don't remember any flushing or rash from the Taxol though. I had no trouble with the 30 minute Herceptin but I know a lot of people are much happier when they slow it down. My BP ALWAYS goes up when I go to the doctor or dentist.
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Very unhappy bunny over here at the moment. The prednisone has mostly worked to get rid of the hives but the leathery dry patches that were previously non-bothersome for months aside from slowly expanding, have suddenly started stinging, burning, and itching within the last few days and it's driving me nuts. It's up and down both sides, curling around to my back and under both breasts, and my cancer breast looks like the radiation dermatitis regressed by 3 months. In the past things have looked worse than they felt and now it feels worse than it looks. Heat makes it immediately worse so showers are miserable and going outside in this weather (90s with high humidity) is very un-fun.
I called the triage line this morning and they had me come in to see an NP, who got an on-call MO to come take a look, and basically I was told they don't know why it's doing this right now but it's probably a Herceptin reaction that hit a tipping point for some reason, that it burns because the skin is so dry and cracked (yeah, thanks, I couldn't tell), and to try Aveeno baths and wait to see my regular MO on Wednesday. I'm mad about this, partly because the prednisone is messing with my head and partly because I haven't called the triage line for one single thing the entire time and was hoping for more than being told by a random MO who didn't even know my correct medication list that basically it's just "one of those things." Why is it suddenly spiraling now, why isn't the prednisone working on it or indeed seeming to make it worse, and why isn't there something else to try?
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gamzu710 -I’m so sorry to hear your having this reaction. I hope your able to get relief and answers soon. How many more herceptin treatments do you have to go?
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Two more. Next one is supposed to be Thursday. I'm meeting with my MO tomorrow to discuss the plan of action. I wish I thought we could stop at 15 instead of 17 treatments but it's probably not smart, unless she has studies to counteract the ones I've read or additional wisdom.
I think I've done fine with the side effects from Taxol, exemestane, etc. because I knew what was common and what to expect. This has happened out of the blue and no one seems to know what or why. I don't like the guessing. Hopefully my appointment tomorrow will bring clarity but I have doubts and am preparing for letdown.
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Had a good meeting with my MO today. She was puzzled by the issues (her first question was "So what do YOU think is going on?") and thinks it could be caused by any one of the drugs I'm on, though the Herceptin is the current leading suspect due to the timing. But she said it could also be the exemestane. Or even the Zoladex, though that would be surprising.
Anyway, we are stopping Herceptin early and she also told me to take one month off exemestane and then she would like to change to Arimidex or Femara. And no talk of weaning prednisone yet. If it's still not better then we will also try switching from Zoladex to Lupron. She was reassuring that 15 vs. 17 Herceptin will not make a difference in my survivorship and neither will 1 month off AIs. Obviously I'm a bit nervous about that, but this rash is just getting worse and worse and I felt validated that both she and the veteran infusion nurse seemed worried, because I felt kind of blown off by the midlevel and other MO on Monday.
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gamzu710 - I'm glad your oncologist is taking action. I've read a lot of your posts and I really feel for you. I hope all of this resolves. You've had such a tough time and you deserve better. You're in my thoughts.
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Thanks, jh40! If I'm inside in the A/C not moving much and wearing minimal clothes, it's OK but other than that, oy. Today it's more red and raw looking and is starting to be more painful than itchy, so I'm keeping a close eye on it but I'm hopeful that it will start to turn around soon as the drugs work their way out! The idea of stopping the exemestane too honestly never occurred to me but my MO was adamant. One of the other major cancer centers near me has an "oncodermatology" clinic that seems to specialize in this stuff (once you find the right specialty word to search, it's easier!), so I might look more into that pending on how this resolves.
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gamzu - I have been following along with your skin issues - I was actually going to post and say you should look for a derm that has oncology experience - so, I am glad you have that as a possible avenue. I am also a person with skin issues - big time allergies and sensitivities, along with at least 50 skin cancers in the last 30 years. I am fortunate that my MO happens to be married to a derm so he seems attuned to skin issues and reactions, and he also went to med school with my MOHS surgeon derm. I developed a photo-sensitive rash during chemo and Herceptin, but it did resolve post-chemo - I will never know if it was just the chemo or the combination of chemo and Herceptin. My only concern with stopping the Herceptin and the Aromasin at the same time is that you won't know which thing was the problem. Not that I want you to continue having a problem though! I imagine that is you restart Aromasin, or change to another med and the rash crops up - you will have that answer. Have you tried Rx topical steroids combined with Rx hydroxizine? I have a prescription for Triamcinolone for the shingles I got after my first Covid vax, and it worked pretty well at taking the rash down a few notches, and I routinely need hydroxizine post-surgically because I am allergic to adhesives, even surgical dressings.
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I do have triamcinolone cream and I tried it before it got this bad and it didn't seem to do much but maybe I should try again. My concern with creams right now is that it feels like the skin might be open--when I apply moisturizer there's a few seconds of delay and then an agonizing wave of pain as it sinks in. It feels like literally pouring salt into the wound. I think steroid creams are contraindicated in that case? I can't see open wounds but it certainly feels that way and the NP on Monday said there are probably microcracks. They did say if it starts to blister or anything like that then I need to come back right away.
I had the same thought about stopping both at once and my oncologist admitted the issue, but her view seemed to be that there are other AIs, that she's seen enough rashes with exemestane (though not like mine) to be suspicious, and that the priority is stopping whatever this is before it gets worse. I was so fixated on the Herceptin that it hadn't even occurred to me and I was hesitant (especially after all the emphasis on what an important treatment this is!) but she was adamant to come off it right away. I have another appointment in 3 weeks and hopefully there will be more clarity by then.
50 skin cancers, wow! We also have a widespread history of BCC and SCC in my family, and my father had melanoma a few years ago. A very pale family on both sides! I've always been very prone to dry skin and random blotchiness so maybe it's been lurking the whole time. But that's also given me a pretty high tolerance for weird skin, and this is next-level. Actually yesterday my MO commented "Oh it's on your face too" and the main nurse who saw me in passing both last week and Monday was like, "Oh no, your face is even worse!" I was like, what? What's wrong with my face? It FEELS okay and I hadn't noticed anything particularly odd except that it's a bit more red and bumpy than usual but maybe it's been so gradual that I'm just used to it! I felt like I should be offended or something, LOL.
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Hysterectomy and Oophorectomy -
hello everyone -I wanted to get some thoughts and your experience with post cancer treatment issues.
I was triple positive (48 years old) and completed all my treatments. I was pre menopausal when chemo started. However, I didn't get my period after the first chemo for almost 12 months. Docs switched me from Tamoxifen to Anastrazole earlier this year when the blood work was done for hormones which showed I was post menopausal. Fast forward 6 months, I started to get some light bleeding every month which obgyn said that was abnormal bleeding due toover grown uterine tissue - per biopsy done. Since it was recurring I wondered if I got my periods back and had the MO test my hormones. FSH and estradiol were premopausal and LH borderline of menopausal. MO concluded I was pre menopausal again and now back on Tamoxifen. meanwhile, obgyn says any bleeding post menopausal is abnormal and is suggesting removal of ovaries, tubes, uterus and cervix since progesterone treatment isn't recommended for me. Now that it looks like I am premenopausal, is this major surgery truly necessary. Has anyone been on the same boat? Is having ovaries a detriment? If it's just the lining of uterus, can't I have a D&C and maybe remove ovaries (instead of the whole thing) and keep watching it? Has everyone who has had TP cancer be on high risk for ovarian cancer? This surgery to remove everything makes me nervous.
Any thought and sharing of experience is welcome.
Please let me know! Thank you!
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Hi hopeful2020!
I was diagnosed at 46 and premenopausal. My periods stopped after I began Taxol + Herceptin + Perjeta. Nevertheless, my oncologist wanted me to do an AI, so I began ovulation suppression (monthly Zoladex). Seven years later, I'm still doing Aromasin + Zoladex. I've taken Zoladex vacations before, but my FSH and estradiol levels say I'm still premenopausal. Ugh.
I could have my ovaries out and skip the Zoladex. But, I've only got 2.5 years more of this crap. (I'm on the 10 year plan after the Breast Cancer Index said I still have a 19% chance of recurrence.)
You may want to seek a second opinion from a different OB/GYN. My OB/GYN doesn't care what I do; said it was my decision. Of course, I'm not having monthly bleeding....
Did you do genetic testing? If you're not BRCA1 or BRCA2+, I'm not sure we're automatically at risk for ovarian cancer. Good luck!
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Thanks Elainetherese. Brca was negative. I haven’t spoken to my obgyn after the blood test came back for premenopausal. What’s the advantage of zolodex vs tamoxifen? My onc has not talked to me about zolodex. Have you ever checked your uterine lining at all?
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Hopeful2020, you might be interested in looking at the SOFT and TEXT trials (https://ascopost.com/issues/july-25-2018/8-year-update-of-soft-and-text-trials/), which showed some advantage to ovarian suppression plus either tamoxifen or aromatase inhibitor, versus tamoxifen alone. In other words, the studies do show some recurrence advantage to not having active ovaries. Whether that's by surgically removing them or just using Zoladex or Lupron injections is very individual.
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Yeah, I ended up doing Zoladex + Aromasin because of the SOFT trial. Because I've done an AI and not Tamoxifen, I haven't had my uterine lining checked at all. AI's don't have an impact on the uterine lining.
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gamzu- Thank you. Looked those up. Somehow my MO said the course of treatment for me would not change if I had or did not have the ovaries. Not sure what her reasoning is for not suppressing the ovaries. There seems to be a slight advantage with the ovaries being suppressed from the Trials.
elainetherese - good to know. Thank you.
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Rash is feeling somewhat better, though doesn’t look great. I felt a difference from Saturday to Sunday. Which seems to make sense as a timeline for the drugs coming out of my system. I did manage to get an appointment at the oncodermatology clinic for this coming Monday, which will be before my next meeting with my MO. I just want confirmation that we’re on the right track and not removing things unnecessarily from the arsenal, or that we could make it go away faster with a more aggressive regimen and not get more delays waiting for increased improvement. I almost didn’t call because I assumed any dermatologist would not have appointments in an acceptable time frame, so I was surprised to be given something in less than a week. Hopefully it provides reassurance
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I had my oncodermatology consult today. They were puzzled too! I saw the head of the clinic, though. He feels it is a “cytotoxic skin reaction” to Herceptin, maybe the antibody attacking EGFR receptors too which is next to the HER2, and we are going to treat it like a bad burn. The plan is to wean prednisone unless it starts getting worse again when I try, and I’ve been given a powerful steroid cream (not the one my oncologist was using), and antibiotics. They spent almost an hour with me and I have a follow up in 6 weeks.
The skin has been peeling off in chunks and they expect it all to go because it’s injured. Sounds like this is not going to be a quick thing! Since Nerlynx targets the same receptors I think that may be a no go but I will ask at the follow up. He thought trying another AI would be fine though
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gamzu, so glad you got to meet with the head of the oncology derm clinic. I can't believe what you have been through with this. Thinking good thoughts for you.
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Thanks, cowgirl. They confirmed what I've thought for the last few days, which is that the skin stopped hurting so much because the top layers basically burned and died. It's like I'm covered in a layer of saran wrap that has to peel off. It's quite a bit of body surface area so it's fairly gross. Big chunks have been coming off in the last few days and it's a bit raw but the skin underneath seems OK so far. Anyway, I was happy that they spent so much time with me and that I got to see the head honcho, and also paradoxically that it was something very odd to him too; he had different ideas about how to address it but it means my MO didn't miss something she should have known.
Knowing that the AI is probably safe is good news, but my big question now is what does this mean for the future. What if I need Herceptin or similar drugs again later on? Is this a one-time freak thing or what?
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1982m - sorry it's been so long but re: Neratnib, I believe we paused for a couple months before starting it. It was a piece of cake, I promise! Make sure you taper up to six pills a day. Most people start having issues at 4 or 5 pills if they're going to have issues. I was able to taper up with hardly any problems. Some women have a terrible time with it which was almost difficult to believe considering I had it so easy!
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I asked the dermatologist about Herceptin and Nerlynx in the future and the answer back today was basically that they don't know and we'd have to cross that bridge when we come to it. Apparently the prednisone precluded the usefulness of a skin biopsy. I meet again with my MO next week and will see what she says. I actually want to give the Aromasin another go, because everyone seems to think it's unlikely to have been the culprit. And I know the side effects are tolerable and people seem to have a tougher time with Arimidex, just in reading around. And if it starts happening again at least I'll recognize it immediately this time and can stop right away and then we'd actually know. But I feel like it would be OK. We'll see at my next appointment. The dermatologist said only to hold off on restarting it for now, not eliminate it forever.
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I don't want this thread to turn into "gamzu710's blog" but I wanted to update on the follow-up with my MO today.
We are holding the AI for another month until my oncoderm follow-up but she agreed we could probably try Aromasin one more time.
No Nerlynx for now but she hasn't ruled it out and we'll revisit in a few months. She wants my skin to heal first before we even think about that. I was happy to hear that the Herceptin issue hasn't totally precluded this already. She thinks Nerlynx being oral could mitigate it. And not being able to finish Herceptin would be the grounds to request Nerlynx coverage even though I'm not in the guidelines.
And then the bombshell: I can't have Herceptin or any of the biosimilars ever again. Not even for a recurrence. She said this was a "grade 3 adverse event" and a severe immunologic reaction and the next exposure I might end up with Stevens Johnson syndrome or toxic epidermal necrolysis, which would be life threatening. There are other HER2 inhibitors she said we could use if it comes to that, but never again for Herceptin. Still digesting that.
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Holy crap, gamzu -- your skin situation sounds so awful! Not being able to do Herceptin again is less of a concern these days with other options like Kadcyla and Enhertu out there. My neighbor has gone Stage IV with HER2+ breast cancer (lung mets) and she's been doing Kadcyla, which has not been too bad for her. Still, it's never a great thing to be told that a medication is no longer an option for you. Keep us updated! I'm glad to hear that they're giving you some time to recover from the skin thing. ((Hugs))
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hi all - anyone experience multiple delays during weekly Taxol/Herceptin?
I’m 6 rounds in and my 4th was delayed a week due to neutropenia. Now my 7th is going to be delayed due to the hurricane. I’m in the Tampa Bay Areaand we were not directly hit, but apparently my infusion center gets their drugs from Fort Myers which has been just devastated. I feel awful for the people there.
My oncologist has said delays will mean the drugs lose their efficacy. Should I be concerned? Would a double dose for the remaining 6 be an option? (3 infusions instead of 6).
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gamzu - sounds like you're making progress in the right direction, and I will cross my fingers that you will never need these drugs again.
Jh40 - I am also here in Tampa, are you being treated at FL Cancer Specialists? The HQ is in Ft Meyers, which sure does complicate things for those in active treatment. This has been scary, and we here have been lucky, I feel awful for those south and east who have been so devastated. I can't even imagine. How have you felt at this halfway point? I am wondering if you can do the rest of your treatment dose dense? Fewer infusions and a strong finish - might be good for you and the center both. I wouldn't think a short delay is too much of a problem - that happens - but a long one would worry me in your shoes.
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specialk- Yes! I am being treated at FCS here in St Petersburg. And it has been a very scary ride with the hurricane. I wouldn’t wish this on anyone. It’s been just awful.
After the week long delay of my 4th treatment things got a lot better. My counts rebounded beautifully. I’m totally off the steroids and have none of the rough stomach issues I was having before. I’ve got side effects: metallic taste in my mouth constantly, dry throat/thirst, reflux, acne, some mild muscle aches, head hair loss (but no body hair has shed!) and the typical fatigue/yuck feeling. All have been way more manageable than my first 3 weeks.
I’m glad I’m having a better time but I’m nervous it’s because my body built tolerance quickly after that week long delay? I’m afraid another week off would build even more tolerance. My oncologist prefers weekly Taxol over the dose dense because he said the studies have shown constant exposure over 12 weeks is more effective. But I’m wondering what they’re going to offer us and what he will approve with all that’s going on.
The nurse who called me this morning said that FCS are trying to get us all in this coming week. I’m due for my 7th round on Monday but with that cancelled for sure goodness knows I’ll take treatment any day they have the drugs for me. Fingers crossed they get something in for us.
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jh40 - I had Taxotere/Carboplatin/Herceptin, but also found that after a rocky start I felt better in the middle of treatment. I was a bit behind the 8-ball as I had five surgeries in the 14 weeks until chemo started - long story. I am treated at the FCS Tampa location, near Moffitt. I also wonder if there is just not much data with the single agent Taxol plus Herceptin being given in a dose dense format. I have never seen it done - always weekly over 12 weeks. I think it would be uncharted territory, and that could be the reluctance. I am hoping that the other centers in the local area - Advent, Baycare, Moffitt - will help FCS out and share resources for the patients currently undergoing chemo - that would be the humane thing to do in light of current events - sheesh. Keep me posted and let me know if I can help you in any way. I live in the New Tampa area but have little to no constraints on my time, so I am usually around!
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