Anyone starting brand drug, Enhertu?
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dear kbl,
One of the worst side effects of cancer treatment is the PTSD regarding scans and treatments, the stress is unrelenting, so good for you for standing back and saying I've had enough and let me off this train! Given that all of our treatments are palliative anyway, I hope other more gentle options open up to give you the best QOL going forward…
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@cure-ious What a great way to put it. I appreciate your wonderful words. Thank you.
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Ugh, dealing with Day 9 fatigue - this happened last month where I feel great up to day 8 and then do some exercise but that makes me exhausted for Day 9. And I got my lung CT check date wrong (its tomorrow) because I thought today was the 2nd and not the 1st. Oh well, they got me in but it was exhausting doing the hospital trip. I think its because im tapering the dexamethasone so long to prevent the cliff edge leg pain if I stop abruptly. Let's see how the next week shapes up, its usually when I dont want to eat but I feel ok.
I do have to say that this drug may be doing a real number on me mentally though. Im feeling really down but a lot of that is also to do with immobility and all these other issues. Next week is going to be brutal with five days radiotherapy to my chest tumor to get it to stop bleeding. Im worried about the radiation field, side effects and that they may just make it worse. But needs must I guess. Its also getting darker as fall comes on and whole days raining. I try to do small things here and there to make me feel better but honestly Im really feeling the pull towards the other side more even though Ive got good signs this is working.
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Thanks for the well wishes everyone! Ive also been working to access more home support services so I have someone contacting me from hospice palliative care next week about PT/OT and pain management and my GP is sending out a community nurse for my covid/flu boosters later in the month - Im also on the radar for both. And I ordered myself a flower subscription to have something pretty to look forward to every two weeks for a few months. Feels good to be proactive in my care and be DOING something rather than waiting around for.. what?
This chest lump has collapsed even further in the last three or four days alone, its really astonishing. If it wasn't bleeding we would have left it. Just hoping for similar improvement in the hip - if it can shrink enough I am hoping cryoablation could be back on the table.
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Update…..generally good news: I've completed infusion #12 at 80% dose. My latest scans (Bone, Chest CT, MRI of abd/pelvis) are all "stable". Thankfully, my side effects remain mild. I've never had nausea, but food doesn't taste the same. I have some fatigue especially during week one. My foot neuropathy has definitely gotten worse, but I've been told neuropathy is not an identified side effect of Enhertu. I may try acupuncture for the neuropathy. My chest CT showed no evidence of pneumonitis (IDL). I have my cardiac output status evaluated for a second time in a few weeks.
I had a port placed today. I didn't want a port, but my veins have started to object to being poked for an IV and my oncologist encouraged me to get a port.
I'm not sure if I mentioned this before, but the reason I now have to have MRIs of the abd/pelvis instead of CT with contrast (which contains iodine) is because I developed a sensitivity to iodine after trying a potassium iodine supplement. This sensitivity/allergy displayed as bullous pemphigoid skin lesions. It was a stupid decision that has had major consequences.
Saw my second opinion Mayo oncologist 2 days ago in Rochester. This was my first in-person visit with her, which Mayo required, and I was told Mayo will nolonger offer video visits to out-of-state patients. So I'll have to decide if and when I want or need to drive to Rochester again. During the visit she listed several possible next treatments - all chemo, including clincial studies, but she added that deciding to continue treatment was a Quality of Life question that only I could answer. I really like her - she is clinically so thorough and also so human.
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Hi all, so I’ve had my 1st progression since starting Enhertu in May 2022. Fortunately, I will continue Enhertu as the 2 new spots in my brain are small and easily treatable with targeted radiation.
Wishing you all the best, this is not a walk in the park.
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Hi all, I am a metastatic breast cancer patient, after 12 years remission from ER+, PR+, HER2+ my cancer came back as ER-, PR-, HER2+.
I've been on Phesgo for two years since the relapse, recently I developed brain metastases on this trastuzumab/pertuzumab therapy, these are 2 or 3 lesions less than 2cm. There is also inflammation in my bowel but they can't be sure whether that is disease or not.
My doctors are talking about starting Enhertu.
I was interested in whether anyone had any other treatment after brain mets before starting Enhertu?
I have heard you can start with stereotactic radiosurgery and continue trastuzumab/pertuzumab therapy until you get more mets, and that sounds more appealing to me.
I'd love to hear from your experiences of this situation please, as I'm quite lost.
All the best,
Bernadette
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@berndatteire i’m HER2+ and we found my brain mets while on H&P but they were likely there from the beginning, I was diagnosed stage IV de novo only 10 months earlier in 2016. From 2017-2022, I had 6 gamma knife treatments and s craniotomy. The switch to Enhertu has been outstanding at controlling brain mets with 2 1/2 years of nothing new until just recently. I’m currently having 5 sessions of targeted rads, then back to my regular infusion next week. Feel free to message me with any questions.
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Best of luck @illimae ! We know you're a veteran to the radiation, but know we're thinking of you!
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As Illimae experienced, Enhertu has been reported to be really effective for brain mets for Her2+ cancers.
For the longer term, there was a small phase 1 trial that recently reported out that a drug called TMZ, used for glioblastomas, when given at low doses together with the Her2 drug TDM-1 , seems to work as a preventative to suppress further brain mets from forming. Really promising data for phase one, so something to keep an eye on for future:
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Hi, It looks like Feb. 2024 was the last time this topic was looked at? I turned 78 today and am very happy with my progress. I am starting Enhertu #28 next week and am delighted with the results, normal tumor markers and "resolved" PET scans. I went to 80% after having ILD but was able to go back to Enhertu after it was cleared up with prednisone. It's Only a 30 min. infusion after it finally gets started, and I have a port which makes it easier. Day 4 and 5 are my worst days for Side Effects, so I try not to plan anything on those days. I can use 4 mg zofran for nausea that may hit the first week or two. Today I'm at the end of my 3 week cycle so I feel great, normal. It affects everyone differently. HOpe I can say on this for a long time. Hugs all, Nina
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Ninaca,
Happy belated birthday! Thanks for the update. Do you get decadron as a premed and for a couple of days following? I've tapered down to 6mg pre infusion only. I'd like to keep tapering to none. My oncologist has OK'd this reluctantly. Thankfully I don't have nausea. Like you days 4-5 are my worst. Fatigue, appetite down, food tastes off. My foot neuropathy has also gotten worse. Just had a port placed 10 days. Had considerable bruising and pain, but every day it gets better. Not sure it will be healed enough to use for next infusion (#13) in 2 days. My last scans were "stable". Have echo coming up - hope it is OK.
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Hi everyone,
Thank you for sharing all of your stories. I'm new here. I was diagnosed with lung mets (metastasis? I'm still working out all the abbreviations) in August. I'm going to have #4 Enhertu this Friday. I am still trying to figure out what life is now and if I'm on the best treatment and what to expect. I appreciate all the information from everyone.
Happy belated birthday, Ninaca!
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@berwickst With Enhertu, expect anything. While it’s been great for me, it has also been wildly inconsistent with the side effects and it definitely took time to figure out. Wishing you great success.
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berwickst,
BCO is an excellent site for all manner of support, learning, sharing experiences, and tips for dealing with side effects, etc. Be sure to check out the "Learn" tab and if you have questions about the site, just ask the moderators. I "bookmark" the discussions that I have a particular interest in for ease of finding them quickly again. For some reason the BCO Enhertu discussion is not very active, but there is a very large and active Enhertu Facebook page. I do visit the Facebook site, but always come back to BCO for the more substantial and better organized discussions and the on going connection with commenters whom I've gotten to know. I hope you get a long run on Enhertu.
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@berwickst wishing you well with your Enhertu treatments. I was on it for 6 cycles, others much longer. The hardest part for me of the METs diagnosis was getting my mind around what life would look like now and the best treatments etc.. I understand! It’s confusing at first and takes time to get your mind around it, at least it did for me when I was diagnosed with a recurrence in January 2024. Now 10 months later, I’m pretty grounded and feel well supported. You will too over time. From my experience, with Mets the treatments are less toxic on the treatment path vs the curable path , and so we try a treatment and monitor it and when / if progression occurs, try a new one. And so it goes. Enhertu is an excellent treatment and I too wish you a long run on it. There is a lovely series of weekly Zoom meetups that BCO offers, many gals on the METs journey, if you are interested.
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Thanks @rlschaller for mentioning our groups. Here is the link to the Zoom meetups:
There are 3 per week for people managing Stage IV breast cancer.
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Well, got the call today that yesterdays CT showed ILD starting so I got hauled in for IV prednisone and then my meds. And some potassium while they were at it. This was proving to be a pretty easy drug for me but honestly Ive been starting to worry more about it not resolving the hip much in any way. I only started a bit of a chest, phlegmy cough from Monday morning and I had a CT on Wednesday so certainly caught early. Ah well, maybe I can grow some hair and put on some weight in the next four weeks.
Not sure if MO will let me back on as I had ILD with Afinitor as well, but I guess depends if we decide to scan the hip beforehand. There are other drugs but this was supposed to be the miracle and hell Im not even supposed to BE HER2+, if everything had stayed cool as ER/HR+ I would be on easy street right now since all those mets are dead and gone. Instead we keep chasing something to fix this hip mass and nothing is working.
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Hi, Just checking in, it's been a while. Current diagnosis peritoneal carcinoma. I started Enhertu 2/1/2023 and I continue to do well on it (markers and scan are "normal"). I'm on #28, currently at 80% (decreased after ILD). In the first week following infusion I don't usually feel great but I'm past that time today and am feeling lucky. I keep managing the side effects, always something surprising comes up. This time a rash near my port which I decided was cutaneous mets (catastrophic thinking). After sending photos my doc wants a look this week! I share my new regimen- miralax added to senna the first 4-5 days after a painful day of impaction from zofran was used successfully for prevention this time. I have leftover neruopathy from Taxol that I fear will be with me forever. The only thing that gives me relief is using Vick's Vapor rub! It's temporary but my toes seem to come alive. I use Ritalin for my fatigue a few times a cycle and 4 mg of zofran for the nausea when needed- the half dose is gentler and less binding.
kbl I've seen you on many websites for years, you have always been kind and helpful. I learn so much from all your sharing. Hugs to all, Nina ❤️
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Hey Nina, you haven't had any issues with ild after that first bout, right? What were the criteria for your mo to let you back on the drug? I think she started me at 80 pct due to the ild risk and I still got it, not sure if 60 pct is an option. But I was doing well with all the side effects ironed out with not much fatigue. I woukd hate to burn the line too quickly.
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After 2.5 years, I finally had no symptoms, could I be so lucky? No, day 11 of the last cycle hit me with bloating and indigestion and just for fun food aversion but not all day, only when I took my first bite of the burger and wedge potatoes I made for dinner. It could be worse and has been but seriously, I hoped I was done being surprised by now.
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A reason to NOT take decadron as a premed for Enhertu if you don't need it.
I have 3 dental implants that have been stable until now. These implants are now showing progression in pocket depth. One pocket is 6 mm. My periodontist asked if I was on prednisone and said steroids can have harmful affects on oral health and especially on implants. I had informed the prosthodontist that I was on Enhertu, but didn't think to mention the steroid. Decadron is a standard premed treatment at the facility where I go. I've been slowly tapering off since I don't have nausea. I'll stop now entirely. Would have stopped sooner if I had known. My periodontist says the implant pockets may reduce, but may not. I'm pretty upset.
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I just finished infusion #15 at 80% dose. My side effects remain mild and are worse around days 5 -7. However, my Hgb has now fallen below normal at 11.2. My Hct has also been trending down, but is still within normal limits at 35. It my understanding that this is due to bone marrow suppression. I was told that iron supplements would not help and the only treatment would be blood transfusions if/when needed. I didn't ask, but wonder if reducing the dose further or extending the 3 week cycle out to 4 weeks would help?
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