Anyone starting brand drug, Enhertu?
Comments
-
NKB, nothing has changed, other than starting Enhertu, I've had 3 infusions. I was in the hospital beginning of the week, nothing was said about liver. I was told my labs were all good. Thanks for the reply.
0 -
Goldie, no itch for me but I did have terrible itching on Perjeta. Clobetasol ointment (no OTC product worked) resolved it in a couple of days and soon the itching became very rare.
0 -
Update: I am currently on day 8 after my 8th infusion and normally I’d have been puking for days by this point but I’m not, yay! The difference now is adding Olanzapine (Zyprexa), which I understand is an anti depressant but is often used for vomiting. I tried this initially but it didn’t seem to work. I suspect taking it in the morning was pointless as gut trouble was brewing overnight and/or I just threw up the pill soon after taking it. I take it before bed now and it’s made all the difference. I’m noticing no nausea or fatigue either. Just wanted to share in case anyone has similar issues.
0 -
illimae, glad your medical team have found a medication that stops you vomiting, Hurrah, no buckets needed now : ) Thanks for posting your hints and tips.
0 -
I'm glad you found something to help with the throwing up. I'm just so amazed at how SE's differ for people. I have not thrown up once! I get dexamethasone and something else during infusion and then dexamethasone for the next 2 days, 1 pill in the morning.
0 -
Fantastic news Illimae! this drug does seem all about managing the side effects preemptively. Mine all seem GI- mostly constipation and mild reflux-
0 -
I will be starting T-dXD. (ENHERTU). Did you loose your hair on the drug. I have been on treatment since 2017. CMF, ACT, Herceptin, Xeloda, Verzinio and radiation to breast spine hips, and breast again.Went through hair loss once. The cancer has now spread to my plural cavity and the other breast, and Is also very close to my brain throughout my spine. . At this point with the way the cancer has spread, and nothing seems to work, I am hesitant to even try a new drug, loose my hair again if it doesn't work.. I can not seem to find anyone who has had experience with this drug, . I really feel at this point nature should take its course and I can retain my dignity. There just does not seem to be enough information out there from actual patients who have been given this drug. I can only find the hyped up info from the drug company and doctors. I think most of these drugs are just big money makers for the medical industry, and I am tired of being the shopping cart.
Any true user info of this new drug would be a great start.
Thank you
0 -
Hi croton, and welcome to Breastcancer.org.
We're so very sorry for the reasons that bring you here, but we're really glad you've found us! You're sure to find our Community an amazing source of advice, information, encouragement, and support -- we're all here for you!
While you're sure to get some great responses here from our other members who are taking this medication, we wanted to invite you to join one of our MBC Zoom Meetups, where we have quite a few members who are currently on this medication and are happy to candidly share their experiences -- many who have had tremendous response! (@illimae, looking at you
)We hope you get some helpful information here and we look forward to "meeting" you in the Meetups!
--The Mods
0 -
Thank you for your response, it was appreciated. I do not have access to zoom , my computer does not have a microphone, or I would surly join. But thank you for the invitation. I do go to a top hospital, but there is no in person group to join to discuss and exchange information. They always offer social workers but that has no bearing on sharing experiences with other patients. I trust my doctors as they are always looking to do what they think is best and most beneficial, and so far I have gotten this far. . But at some point when I look at the facts, I wonder if I am just prolonging a bad situation. I had previous experience with 2 of my children that had cancer, that was back in the late 80's. I know much progress has been made since then especially with the radiation dept. But the drugs seem to be way behind the times. I think they spend more effort on advertising the new drugs, then actually making something that works superior to past drugs. I would love to be able to sit down with other relapsed patients and exchange experiences. I hate when I see patients so broken from the treatments that they succumb to pneumonia . That is why I think it is so valuable to speak with others in my position, is it so wrong to say enough is enough, and do other patients feel this way. are we to afraid that we will seem ungrateful to others? I am just so confused and feel I need to make a decision for myself, before I just go ahead and take another drug, that dosen't work, and only destroys my body more.
0 -
We appreciate your concerns, Croton. You're sure to find great support here!
Also, just a note, you don't necessarily need a computer to access the Zoom meetups -- you can do so via your mobile phone either by video OR simply just calling in. If you register, the info will be there to instruct you how to join.
Either way, we're sure others will be by soon to weigh in on your thoughts and concerns. Treatment decisions certainly can be so hard. We're all here for you, whatever you decide!
--The Mods
0 -
Croton, as the mods did, I also encourage you to join us by phone. I also agree that treatments often harsh but I’ll say that Enhertu is really new med tech and I’m super impressed by the Trojan horse way it works. After 6 years of stage IV with stable scans, my latest ones were the best so far.
0 -
Croton- hi. it is really scary and hard to start a new medicine and wonder if you will manage side effects and if it will even work. One of the reasons that MOs are so excited about this drug is that it has a high level of working even in "heavily pre-treated " patients- for Her2 low the numbers are small, but, from the meds you have been on, I assume that you are her 2 +. I am Her 2 low and my tumor markers are coming down, I have not had a PET yet- will in the next few weeks- I just had infusion #4.
I have been using cold caps (Paxman) because many people lose all their hair- especially if they have had previous chemo where they lost their hair- many people do not lose their hair (not a lot of data) and it seems many people shed a lot for 2-3 cycles and then it starts to grow back. I thought losing my hair the first time was very traumatic and I didn't like wigs much- It took a long time to grow back in. I Chose to cold cap- it adds time to your infusion day, is uncomfortable for the first 15 minutes- but, I have only shed about 30% of my hair, no bald spots, not wearing a wig- more hats because I am cold- it's winter- and having small little areas of regrowth. cold capping helps regrowth by protecting the follicles. the funny thing is that most people on Enhertu do not lose their eyelashes or eyebrows! some do.
There is a Facebook group for enhertu- but, many people who post on it are having a hard time with this drug. there is a Paxman site also on Facebook with lots of useful info. some people get reimbursed by their insurance for cold capping.
0 -
Thank you
0 -
Just had infusion #4. This time we lowered the dose, and I traded the ondansetron (Zofran) for prochlorper (Compazine). Doing better this time with nausea. Some annoying headaches, but not bad enough to bother with painkillers. Still quite a bit of fatigue, but part of that could be low energy from the change in daylight. Seasonal affective disorder has always been with me.
Haven't really lost my hair with this treatment, but it looks like my new hairline is quite a bit higher than it used to be, before the Taxol. Hair did grow back, but not all of it at the top front. Don't know how it's working yet, but my markers were trending down. I'll have a scan in January to see if this is doing anything for the new growths in my spine, rib, liver and lungs.
0 -
Croton, most definitely Ilimae has had a great response to this drug. I only have 3 under my belt. My hair started to fall out after my 3rd treatment. Not as bad as when I did the big chemo's in the beginning (2008). To my understanding, it will just thin and not go completely bald. I say give it a try, you can always quit. I know nausea and vomiting are common with this drug, I have been fortunate enough to not have any at all. My MO changes my treatment when my TM's go up, however, that doesn't seem to make a difference. I change and they still go up. I too have thought of quitting and let nature takes it course. My mets are bone only, I have no pain whatsoever and have not had to have any radiation since stage IV.
0 -
Hello,
While under Enhertu regimen, does anyone get the chill in the middle of the night or nap that causes one to wake up?This happens almost everyday.
Thanks.
0 -
No chills for me.
0 -
goldie0827, why would you want to give up treatment and let nature take its course? unless you were really sick from the treatment are you just sick of being in treatment?
1 -
Sunnidays, like I said, I have thought about it! I would never do that! It just makes one wonder, ya know? Sick of treatment, yes? Is it really that bad, not yet! And I'm loving life every day. It' all about quality, and if quality gets bad, then I may give it second thougts!
0 -
No chills for me either.
Goldie, I’ve thought about the natural course before too, out of curiosity. If I ever decide on that, I’ll document it on BCO for others who wonder.
For cycle 9 (I had #10 on Monday), we added olanzapine taken at night to address the major vomiting issues and it’s been fantastic. I did throw up once after coughing and choking on something but otherwise no puking and no nausea or fatigue either. I was considering a dose reduction but now I won’t bother.
0 -
I’m evaluating this drug and TDM1. Very interested in hearing from others who have tried it on quality of life and side effects. It seems to have better clinical trial results, but I’m not sure that I can tolerate it given my history as a chemo, drop out due to hospitalization with each round of chemo. I agree that I’m not particularly interested in losing my hair again, if we’re only talking about six months of extra life expectancy. I’m so sorry that you’ve been through so many treatments and are where you are today. I’m new to my second diagnosis. I am trying to process a lot. I’m very thankful that my oncologist gave me my daughters childhood from age 7 to age 17 for me to be alive and cancer free for 7 yrs of that.. I’m not sure what will happen from here though. As a single mom, I am scared financially and want to set my daughter up for success in college. I don’t want the stupid disease recurring to impact my ability to send her to her dream schools. I also had my new diagnosis coincide with a diagnosis of a rare and serious rheumatology condition that is disabling. It’s attacking all of the systems in my body, making me a lot weaker going into this than I was with my first diagnosis. I’m just not sure I can tolerate any of the drugs, when is it too much to fight? I applaud your courage to discuss your dignity, and I can’t agree more. That is definitely a consideration yet at the same time, I hope of seeing my daughter graduate, go to college, start a career is worth living for two. I just don’t know what the quality of life under Tdxd would look like, and I hope somebody with experience with his drug responds
0 -
Please, let me be clear. I have NO intentions, at this time, in stopping treatment. My QOL is very good! I am very gratefful that we have so many treatment options!
Formydaughter, Enhertu has actually been very tolerable for me. As for the hair loss, it's not total hair loss like the big chemo's you get hit with when first diagnosed. It just thins. You say this is your 2nd diagnosis. Is it another primary or do you have mets? Either/or, it's not the end of the world. I've been stage IV since 2014, I'm 64, and can say I feel great! Not sure what my next line of treatment may be, but for now, I'm happy with where I'm at. Xeloda and Verzenio were not "fun", but tolerable. Herceptin/Perjetta were a piece of cake. Piqray has been brought up, and that one scares the bejeebies out of me, heard too many horror stories on that one, and I think I might even refuse if it were to be brought up again. I say, whatever treatment is offered to you, at least give it a try, you can always quit. Stop looking at the things you may miss in life. Instead look at the good things that are happening today, tomorrow, next week. I refuse to let cancer control me! All the best to you my friend!
0 -
Just got Infusion # 5 and first PET scan today. TMs have been going down, but, very slowly compared to previous treatments.
PET shows still bone only. Overall interval decrease in metabolic activity of most osseous lesions with few showing minimal increase in tracer activity.
so good news overall, a slow response- I seem to see that being reported people with bone mets- indolent disease?
Have a lovely day everyone- hope you are getting a good response to this drug
0 -
Dear nkb - wow, very good news indeed. Congratulations! Saulius
0 -
NKB, yay for good news!
Denny, I've only had 4 infusions, but so far, not too bad at all. Wishing you a long run, as well as the rest of us!
0 -
Dear nkb, so far I have got DESTINY BREAST-03 results but they only distinguish between visceral/non-visceral disease (picture below) which could also include brain-metsters and others along bones in non-visceral group. I remember CLEOPATRA was criticized for too many people with bone-only mets included, which could have lifted up PFS/OS... I think in later DB-X summaries we'll see more sliced statistics between groups. It is anyway very very good that disease in your bones, which is usually a "hard to reach", reacted to TDXd. Very encouraging! Saulius
0 -
Hi all -- I wanted to check in with my experience on Enhertu so far. I was on capecitabine last year for about 7 months, initially good results, and then a new lesion showed up in my liver in Sept. Had a biopsy in Oct. that showed HER2- low so we decided to give Enhertu a try. My first infusion was in mid-Nov. I just had my 3rd infusion about 10 days ago. I also just had my first scan while on this Tx -- good news, some shrinkage of my liver lesions! and a significant drop of my CA 27,29 (which has been a somewhat reliable indicator for me in terms of Tx working or not). As far as side effects go, the worst part was bad constipation for the first several days after my 1st and 2nd infusions (TMI?). I decided at my 3rd infusion to skip the pre-meds, and that helped tremendously. I don't typically suffer much from nausea so I was not concerned about that as a possible side effect. To the extent I had any nausea, it was not bad. (I got some CBD lozenges to try for nausea b/c they won't cause constipation, but I haven't needed them yet.) I'm more tired than I was on capecitabine, but I'm still able to get around. Other noticeable side effects: hair shedding -- haven't lost all my hair (yet?), but am shedding a lot and making a mess; not very hungry but that comes and goes -- need to watch whether I'm getting enough nutritious food; some queasiness but saltines often help as does real ginger ale (Fever-tree -- expensive, but I treat myself to it when I need to). It's hard to know sometimes whether something is a side effect of Tx or due to something else. I did throw up a few days after my first infusion, but I think it was a combination of a few things including the new Tx; I threw up once the evening of my third infusion but again I think it was partly caused by something I ate (TMI again??). At this point, about 10 days in from my 3rd infusion, I'm doing ok. My MO says he has seen some good results from some of his other patients on Enhertu. Happy New Year to everyone and good luck to all of us with our treatments!
0 -
Hi
I just had my first infusion last Thursday... I'm catching up on this thread but wanted to say HI!!
tigre
0 -
Hi and welcome, lots of good info and tips here. Take care 🙂
0 -
PirateGirl, I don't believe you will lose all of your hair. I've had 6 or 7 tx's and my hair is still coming out, so it's quite thin.
Hello Tigre. Hoping this tx works for you. I find it pretty easy.
0
