Anyone starting brand drug, Enhertu?
Comments
-
Day 11 and I was feeling good as new, until I got my bill for the radiation therapy. I'm on the hook for $2800, and that's after insurance paid its part. It was the last thing I did on my marketplace insurance, and from now on, I'll be covered by Medicare and some supplementals.
It's a chunk of change, but I would have paid any amount to get the fungating tumors controlled, and the radiation was successful at that, so I am content.
Howdy, Jobur! I concur with you that Xeloda is deceptively difficult. It looks all easy because it's pills, but those pills pack a punch.
0 -
Yikes re the copay!
Glad you are feeling good otherwise.
I do infusion #2 on Tuesday
Anyone have a lump in the throat sensation? may be just nerves- but, new symptom for me
0 -
Hi, I just saw this thread - I've been on Enhertu for 5 cycles and it's currently working to control my spinal cord mets.
I have difficulty swallowing for a few days after each infusion. I don't know if that's the same as a lump in the throat. My MO says that a rare side effect, but it's easily managed by using water to help swallow, so I don't mind.
0 -
Superdenova37- thanks for letting me know that you have had that lump in the throat sensation for a few days every cycle. mine finally went away a few days ago- got second infusion today so we will see if comes back.
I am thrilled to hear that it is working for you! YAY!
0 -
Not joining your team yet. Eribulin worked on the liver tumors, but caused peripheral neuropathy. After a break, numbnes is gone, so MO decided to keep my on Eribulin at a 10% reduction in dose and see if I could tolerate it. Good luck to you all. Might see you in the future.
0 -
So happy that it is working for you!
0 -
Cycle 2 much better than one, minimal nausea. (with zofran )
hair has started shedding a lot. hope that stops.
not sure if it is working, pain better, but, TMs went way up after infusion #1. can do yoga again
0 -
illimae So great to hear this drug is working so well on those brain mets! And of course a little less puking is a nice plus too. Hope both improvements continue for a good long time.
ninetwelve Good to run into you here my friend. I had to Google fungating tumors as I hadn't heard of these before. Sorry about that hefty bill but glad to hear the rads took care of them. I think you will love being on Medicare with a supplement. Just completing my first year of this coverage. I arranged for my supplement to also pay for the small Medicare deductible and have not received a single bill. So hoping you won't be getting any more insurance "surprises" like that one. I so agree about Xeloda being rougher than one would think. I had infusion #2 on Tuesday and am feeling so good on this tx so far, almost like my old self. Hope you are feeling good too and this will be a long lasting and effective tx for all of us.
nkb Glad to hear 2nd infusion went better. Hope this trend continues. Are you still cold capping? I think I am shedding a little but may be related to this time of year rather than tx. Glad to hear pain is less and yoga is back on the menu! Hopefully the rising TMs were just a fluke.
superdenovo37 Yikes! Reading your list of mets at dx you have certainly chosen an apt screenname! I am so sorry you are dealing with all this, it must have come as such a shock and taken quite some time to wrap your head around. So happy to hear Enhurtu has been working for you and hope it continues for a good long time. How are your se's after 5 cycles?
Could anyone who has been on this tx for several cycles and had hair when they started comment on hair loss? Apologies to those who have already lost their topnot for being so hair obsessed.
Best wishes to all~
0 -
jobur, mild but noticeable shedding started around cycle 3 for me. After cycle 7, I’d estimate about 20% hair loss but I’ve always had fine, thin hair. This is a current pic and I hope it stops here but we’ll see.
0 -
Jobur- it is still shedding- mostly from crown which is the hardest area for the cold capping to work and I have a plan for next infusion. Even if you lose a lot, the cold capping preserves follicles for regrowth also. Destiny 03 and 04 showed that hair loss seems to occur mostly in people who are "heavily pre-treated". I have a feeling that having had AC&T and losing all my hair and various other assaults has put me at high risk for hair loss with Enhertu.
I have noticed something-(sad) that eating ice cream after dinner does not digest well- hours later I feel like it is stuck in my stomach and an overly full feeling for hours. I will avoid it for the next several nights - I know that a true experiment would be to retry it if the nights without it are good- my memory would have to fade for me to do that.
Here's to success for all of us!
0 -
Had my second Enhertu infusion 8 days ago. Very tired again, but this time no diarrhea, and only two incidents of vomiting. Made sure to take Ondansetron (aka Zofran) twice a day from day 3 to now. I noticed extra hairs in my comb yesterday. Cold caps are not available at my cancer center, but last week I tried putting some frozen inserts into a regular beanie hat. Didn't work very well, but maybe a tighter hat could help. My hair on Taxol looked a lot like illimae's. It grew back in, mostly, while I was still on Taxol.
Ice cream after chemo has always been a no for me. It tastes metallic and greasy anyway at that time, and I find it extra hard to digest. I save it for the second week after treatment, and keep portions small. Same for meat, even though I crave it after chemo.
superdenovo, congratulations on the reduced spinal mets, after five treatments! I get my first scan on Halloween, after only two cycles. Wonder if I should wear a costume.
0 -
Hey ninetwelve - what about putting on a swim cap and jamming the inserts underneath it and then put your beanie on? I know of a lady on a UK forum who actually brought packets of frozen peas with her (not a lot of cold capping here) and tied them to her head with a scarf and seemed to retain some hair. May as well give it a try? (the swim cap, not the peas!)
0 -
Sandra, you have to be proactive in the UK and insist on cold calling.
0 -
Illimae, Looks like you will not be able to dress up as Uncle Fester this Halloween, Thanks for the pic, you have the most beautiful green eyes!
nkb, I have been noticing quite a bit of hair in the brush, on my clothes, etc. in spite of cold capping. Not noticeable so far but definitely losing some after round 2. Hope cycle 3 goes well for you.
Eve, Glad to hear round 2 went a little better. Cold capping is not available at my cancer center either. It's all a do it yourself deal, and it's both expensive and difficult on infusion day. The caps I got have to be changed every 15 to 20 minutes and come out of the cooler and on to your head at -35F. Any particular reason you are getting scanned after only 2 cycles? Fingers crossed it shows you are having a good response. Oh yeah, you should definitely wear a costume! I have a lab that day, not planning on wearing a costume but intend to make up some goody bags for my favorite bloodsuckers. The clinic I go to is small, so I see the same gals most every visit.
I think I have had a few more se's with cycle 2. More constipation followed by D, and one 2am barf. Still, my energy level is so much better than it was on X, I am a happy camper. Wondering if my feet will ever get back to normal though. They aren't burning much but still extrememely dry and peeling.
0 -
Jobur- i will have # 3 tomorrow. I started shedding quite a bit also- a few glitches with the pacman last cycle- shedding slowed down after a week- still more than usual- I think there are new hairs also? I will see what my hairdresser says. I will keep doing it though because regrowth is better and faster in people who use it. I had shedding with Xeloda also- not as much as this though.
Fewer side effects from cycle 2, it may be I managed them better. insomnia still an issue
My TMs went up a lot after first cycle and my anemia got much worse- labs after #2, are much better! Hoping my TMs will be also. I have much less pain so I am hoping that that is a sign it is working . Scan probably in November
Feet still dry from Xeloda- a friend of mine can wear her old shoes again, but, it seemed to take about 6 months. My feet were never that bad, but, slippery- which is quite scary while doing yoga.
0 -
Jobur, thanks for the compliment 😁
0 -
Has anybody experienced dizziness while on Enhertu? After cycle 6, I became dizzy and I thought it was a progression in my brain. However, I got scan results today and there is no progression. I'm thankful for that, but would like to know why I am dizzy! It's been pretty consistent for about 3 weeks.
0 -
Hi All,
Can those of you who are ER/PR+ HER- tell me about your experience on Enhertu? Was it effective?
I am HER-, like really HER-... yet multiple doctors seem to think while Enhertu was intended to be for HER+, it is sometimes effective for HER-.
I would like the anecdotal feedback. If you are HER-, was Enhertu effective for you?
Thanks!
0 -
Mikainsb- There is some thought that Her 2 zero may have some Her 2- that the biopsy didn't see or was randomly not in that sample. There needs to be a better test to quantify Her 2.
That being said- there are some people using Enhertu for TNBC with success- they usually try Trodelvy first since there is more data. There are a lot of Destiny Breast trials going on right now- I don't know if any of the trials are about Her 2 zero.
There is an enhertu Facebook page that is quite active- you could post your question there and see If any of the folks are Her 2 zero.
I am on it but, am Her 2 low 2+- too soon to know If it is working yet.
0 -
Does anyone know what happened to BevJen…I just read she passed in July. I know she was starting Enhertu. I’m so sorry to hear about her. We communicated quite a bit when I was first DX. I hate this disease
0 -
I may be starting Enhurtu soon, after Trodlevy failed to stop the growth of a liver tumour. I am still reading previous posts on this thread. I have been told I will need an echocardiogram, has anyone else had this procedure before starting Enhurtu?
0 -
I had a MUGA scan before I started Enhertu treatment- Echos check this also - it is to check the Left ventricular Ejection Fraction of your heart (how well it pumps). About 3-4% of people have cardiac issues with this drug. I will need this test every 3 months per my doctor to watch the heart.
0 -
Thanks, nkb, I did not know what they would be looking for. It looks like another regular appointment to add to the list, sigh.
0 -
Denny, echo’s are usually done every 3 months, so not too bad as far as appointments go and, maybe it just me, but I find them fascinating, seeing how it all works, live in action.
0 -
Thanks Mae, I do look at scans etc. but cannot 'read' them. I will watch the screen as they do the echo and see if I can understand what's going on.
Have your best weekend.
0 -
Denny, your tech should be happy to explain (like “hey, what’s that flappy thing?”, lol). Unlike other ultrasound techs, the final Ejection Fraction numbers are determined by the computer, so they’re less tight lipped.
0 -
Just back from the cardio investigation unit. I had an ECG and an Echocardiogram. Disappointed that I could not see the screen. I was lying on my left side, facing away from the screen most of the time. The tech said the results would be with the cardiologgist tonight, but she could not say when the results will be available.I now wait to see if I get to start Enhurtu, I do have an appointment booked for next Thursday if I am given the go ahead.
0 -
Denny, in case it was not mentioned, 60-65% for the LVEF is considered normal. 50-59% is low but still ok (i fluctuate in the 50’s, lows are my normal) but a significant EF drop or falling below 50% typically requires a treatment break or cardio medication for heart protection when continuing with anti HER2 therapy.
0 -
Hello ladies. I have 3 infusions under my belt and doing pretty good. This week I became achy and itching like crazy! Everywhere except my legs. Torso (front/back), arms, scalp, neck. No rash, but OMG I itch!
Anyone else?
0 -
could it be dry skin? I use Weleda after each shower and try not to take daily showers.
Are your liver function tests normal? were your pre-meds changed?
I haven't had itch- but, skin is dry
0
