Anyone starting brand drug, Enhertu?
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Goldie - thanks for your response - we’ll see what happens w/ my hair - obviously I’m just glad things are working so far. Have you had scans since you started Enhertu? I’m hoping they brought good news. How about blood work- are your numbers ok? I had an echo before starting Tx - my MO said I won’t need another one for a few more months.
Good luck El Tigre - hope this works for you.
Illimae - how is this Tx going for you these days?
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Ha ha, I'm not a fan of scans and probably haven't had any in at least a year, maybe 2. My TM's (2 of them) dropped over 2000. I was shocked and about fell off my chair, as they always go up. As for scans, if I were to have pain, I would consider. My MO tells me this is MY ship and I'M the captain!
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pirategirl, it’s so much better now that olanzapine (taken at night) controls the vomiting, which was my big problem. I threw up once, mostly due to coughing/choking but only the one time. Mild fatigue is still present but it’s my only complaint really.
I have scans in a few weeks and my previous ones showed only 3 shrinking spots in my brain and a single healed bone met in my body, so I’m pretty confident in stable or better.
Thanks for asking, hope you are well.
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Still on Enhertu. Still experiencing the same side effects of headaches, nausea and muscle and joint pain. My acupuncturist recommended a low potency magnesium supplement called Calm for the side effects and it has helped with all of them. That, and I am making a concerted effort to drink more water than I want. I'll have a CT scan in a week and I guess that will tell me if I continue on with this, or if I have to switch to something else.
I've lost a bit of weight, and some hair, and I don't have much energy anymore, but I'm still here.
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Ninetwelve, I find it so odd how we all react differently and have different SE's! I've had no headaches, no muscle/joint pain, nausea only like twice. I've had 6 or so treatments of Enhertu (lost count). I have lost weight, too much for my liking. My eating habits haven't changed, so it must be the drug? But I feel great.....and I too am still here! Wink Wink!
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I had my first infusion at the end of December 22. I woke up on the first of January and felt awful. I tested positive for covid. I did not get a negative test until the 12th. I have no idea whether it was covid or enhertu side effects that laid me low. I am still coughing like a life long smoker ,but have never smoked!! I have another week before my next infusion so hoping for a bit more improvement before then.
Mae I saw your 'bar' on another thread, it looks such a relaxing space, no wonder you don't want to leave it.
For everyone else who is still here , keep on keeping on
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I had infusion #6 and had little nausea, but, poor appetite and then started getting low grade fevers (only took my temp because my Apple Watch said my pulse was high) they were daily and 99.5 to 100.5. per advice Onco RN went to ER and had septicemia.(+ blood cultures ) more common than you think with chemo per infectious disease doctor. Am home now after heart echo and CT to check for other complications. Home now on home IV antibiotics.
Just FYI
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nkb— wishing you a speedy recovery. Glad the ER was able to determine the issue so it can be attacked.
Glad you are home!
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Thanks Dpdgersgirl!
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And...here I am. Just caught up on postings here. Thanks to all,for sharing with us newbies the good, bad & TMI. Ha! CT last week showed growth in liver tumors & "scattered glass" in lungs. I have scarring in lungs due to large amounts of fluid at beginning of MBC. MO immediately switched me off Eribulin to Enhertu as I am HER2 low. Some constipation and nausea, but all controlled with Phillips & Zofran. But oxygen levels are below 90 most of the time. I am scheduled for thorascentisis today and hope it will give me relief like it did (5 times) in 2019. Then will have to see how effective this drug is for me. I think I'm at the end of the line on options, so concerned (& hopeful) this works for a while.
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fingers crossed for you , nopink.
I think it works more often than ot does not. You had thoracocentesis in 2019 more than 3 years ago - you may well bounce back from this one for years again.
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My CT in Jan showed growth in lungs (which had been dormant for couple of years) and liver (which had shrunk previously). So MO took me off eribulin & on Enhertu. I seem to handle the chemo with mild side effects, but can't keep my oxygen level up to 90. I had a thoracentesis last week, but can tell little improvement. I have been using oxygen @night for several months and now find >3 hours off and I'm really collapsing. So, I put a long tube on the concentrator that I can drag around the house. MO is supposed to order portable concentrator so I can leave the house more comfortably. I have a 3 hr drive to cancer center, & hope it arrives before end of next week when I have 2nd infusion. I'm getting body aches from inactivity. I'm trying to be patient to give Enhertu time to help me. Any ideas of how long it will take to know if it worked for you?
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Nopink - I started on Enhertu in mid-November, had 3 infusions over the course of 6 weeks, and had my first scan while on Enhertu the day after my 3rd infusion. It showed some definite shrinkage of my liver mets and a significant drop in my CA 27,29. So it’s possible to see that it’s working as soon as 6 weeks in my case. My MO likes to keep my treatment monitoring “on a short leash” when we’re trying to figure out if it’s working. Now I won’t get scans again for probably 3 months, unless something indicates a problem. Good luck with Enhertu - I hope it’s working for you
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Noinpink- it seems like some people have a rapid response to this drug and some people it takes longer, My TMs have gone up and down- my first PET showed some decrease/overall stable which my MO was happy about. I did have immediate decrease in pain where my biggest bone met is so that was encouraging.
Good luck!
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First Enhertu infusion today. Anxious about sleeping for the next few days, 3 decadron are a lot. Maybe I'll get a lot of paper work done. When I was On Taxol they reduced it to 2. The person who sat across from me during infusion has been on Enhertu since the summer and it is the only medication that has worked for her. Her markers plummeted immediately and no side effects. She has a bag of anti-nausea medication before her infusion. Giving me positive thoughts.
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Nina, we all react differently. I have been on it only since September 23, I get Zofran (2), Dexamethason (3) before treatment. 2 Dexa's a day for 2 days after treatment. I have not been sick at all and my TM's also dropped dramatically a month or so ago, like over 2000! The next ones dropped a couple hundred. Best of luck to you and all of this on drug.
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I’m considering a dose reduction. Anyone go that route yet? If so, did it help solve any problems or lead to new ones?
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Mae- I have not, but, seems like many people on the Facebook enhertu group have. I have always heard (not in regards to enhertu specifically ) that if it works then a dose reduction shouldn't effect the efficacy- I wonder if MDA actually has any data on this. could be a life changer as far as side effects go.
let us know what you find out.
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I'm starting Enhertu tomorrow. No idea what to expect. i just hope it works because things have been rapidly going downhill for me this last year.
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I too belong to that group and have seen gals take longer for the infusion, one hour or more instead of the 30 minutes. Have you considered that Illimae? I'll have to look and see what dose I'm on, surely if it were a lower dose and not 100%, they would tell you?
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Goldie, I did a gradual step down from 90 minute to 60 for several infusions before going to the standard 30 minutes and didn’t notice any difference. My big issues are some occasional vomiting, although olanzapine has been a huge help and fatigue. I’ve never had fatigue like this and I’ve got no time for it.
Nkb, thanks, I’ll definitely report back.
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It just amazes me how differently it affects different people. My only complaint the steroids when they keep me up and I can't sleep, even if I'm dog tired. But it passes in a few days. Wish it would give me the energy! I hope a lower dose helps you. I understand, it's about QOL! I get Zofran and steroids before infusion, then steroids for 2 days following infusion, I don't get sick at all!
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illimae, I have only had 2 rounds of Enhertu, but this is the worst fatigue I have had with any chemo. I am on day 9 and have not got the phyisical or mental energy to do much at all. I have not been sick, but do have gastric problems ; excessive wind and discomfort. I was already thinking I need to lower the dosage ,before you posted. I hope you find the answer to your fatigue, Thanks for keeping us informed.
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I had my second dose today . Don't know if the drug is doing any good for me or not yet . Drug side effects easily handled with Zofran and laxatives , excluding fatigue . I have had two thoracentesis , which improved my breathing and therefore energy a bit . Bloated and gurgle-ly stomach from ascites . May have to have abdonimal paracentesis to relieve that . Trying to stay positive & give chemo time to perform its magic.
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Nopink-i had a lot of GI stuff the first few infusions- bloated and maybe reflux? tums helped- I had to stand after I ate and clothes touching my abdomen bothered me. I hope that is what it is and easily managed-
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pnw- I have to stay ahead of constipation withthe infusion. I take a Phillips pill the night before, night after, then morning & night until I get over it. Last time I had to go to ER for breathing issues & thoracentisis. I was so focused on that that I forgot about constipation.... big regret there! Took a few days to feel better.
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goldie - My MO prescribed clonazepam to help me sleep. I'm especially focused on it right after infusion. Doesn't help me get to sleep, but let's me get several hours (before I wakeup to pee) & I can go back to sleep. I also take 5mg-10mg of melatonin to help get me to sleep after steriods. I agree, steriods can keep you awake, but don't provide much energy once you wake up. Bummer!
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Hi, Just finished first infustion last week- question- what pre-meds are you given? I get zofran and 3 decadron with infusion then zofran next 2 days. I was taking Senna and Miralax to prevent constipation which helped me somewhat through the zofran (I continue to take Senna and Miralax everyday). My doc says I can have compazine instead of the Zofran. Anyone have luck with that? I'm thinking of staying with the devil I know. I was good yesterday but today, day 7 I broke down and took an 8 MG Zofran. Tired of feeling nauseous. I go from diarrhea to constipation and back. My intestinal mets are screwing with my system.
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We all react differently to cancer drugs and we all have different SE's. My mets are to bone only, no organ involvement. I can deal with the struggles of sleep until the steroids wear off. I get Zofran and dexamethasone day of treatment, dexamethasone for 2 days after. I just lay down and rest when I'm tired, if I sleep, I sleep, if I don't I don't. Sometimes it's just a few days, sometimes it's a week. I am not nauseous at all. No huge issues with diarhea or constipation that I feel the need to take more drugs. I hate taking pills. I can only be grateful for how easy I have handle things for the last 9 years being stage IV. I wish you all the very very best. I hope I can stay on this treatment for a long time, been on it since mid Sept.
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It's Monday and I had my first Enhertu infusion last Friday.
I'm dysfunctional, can barely see, totally woozy and utterly disoriented. I couldn't make it to the mailbox if my life depended on it. This stuff has completely kicked my ass.
I never expected this. Thank god for my DH who is taking care of me, I feel like a zombie.
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