Anyone starting brand drug, Enhertu?
Comments
-
it looks like I will be starting Enhertu now. I would love Any tips you have about this drug.
SusaninSF- What is BDC-1001?
0 -
I am not happy about this drug. Enhurtu is made with sucrose and it is infused with 5% dextrose and will break my fast. I fast 5 days before my chemo, day of and 24:hours after. This infusion will be infusing sugar in my veins with the sugar chemo. I just messaged my oncologist I don’t want this drug. I am sure he will be very upset with me. I have no idea what he will use as my next chemo, but he might just give up and tell me to find another oncologist. I had such high hopes until I learned of the sugar content. There is no other option. It must be mixed with a liter of 5% dextrose. I called Astra Zeneca they confirmed it.
0 -
NKB, I had some weird stuff going on with first infusion, but I also have Brain mets so think that was a factor - double vision and painful legs. Since then I vomit on day 4 after the infusion, like clockwork, feel generally fatigued and constipated the first week, have mystery foot pain (probably from so much treatment), but that's about it.
I want to know if anyone on here is getting Enhertu covered by the U.S. gov't marketplace healthcare plans once out-of-pocket max is reached? I will call individual plans, but having done this for my DH once before, it's hard to get any answers till you're signed up and need the drug. Just getting prepared, as I've started LTD and don't think my employer will want to keep paying for my insurance, as I'm sure I'm costing them a small fortune. I know I have 9 months of Texas Cobra coverage once they let me go but looking at all options.
0 -
Thanks Kikomoon!
I am on Kaiser and it is covered. I am going to use cold caps which I have to pay for until I reach a lifetime of $1600. which won't take long I suspect.
I hope that it works well for you!
0 -
I spent $3000 this year alone for dignicap. dignicap said when I purchase nine $300 cards.one for each chemo. The rest are no charge.
0 -
kikomoon, I don’t know about marketplace plans but everything is covered by my Medicare and employer (retiree, I medically retired early) Medicare advantage plan.
0 -
Hi Susan,
I am Chinna. I have been on this discussion board since my 2nd diagnosis with Breast Mets 2016. I read your history and was surprised to see that you have been fighting longer than me lol! Without going into too much detail. I had BC first diagnosis in 2008. Recurrence in 2016. I have been on H&P for 7 years without no new mets and stable. This June 2022 that changed. I have been on KADCYLA since June and just got CT scan results that it is not working. My tumors are enlarging. I was curious to know if you took these routes, and what are the drugs you are taking. I am her2 positive. It was very enlightening to read your post and see that this thing can be beat for a long time...any feedback you can offer would be welcomed. Thank you and Godspeed.
Chinna
0 -
Hello,
Is anyone on Enhertu with bone met and know (via imaging) Enhertu effectiveness (work or not work) against bone met?
Thanks.
0 -
Hi Nguyen,
I am starting Enhertu in 2 weeks and I am bone only- I asked if bone only disease results had been teased out- they haven't yet- not sure many bone only (for Her 2 low) were in the study. also interesting how well it works on ILC
I will post when I get results
0 -
As Enhertu is an IV therapy, do most people get it with an IV placed each time, or has anyone gotten a port for this medication? It is difficult to get an IV in me and this has me concerned.
Thanks!
0 -
I am taking an IV drug, Taxol, and I decided on a port since I have been getting the drug for 10 months and it's just plain easy once the port is put in. You can do it with an IV in your arm each time if you wish but ask the infusion center where you will be getting Enhertu. I believe it is only a half hour infusion after the first time unless you get other medications too. Taxol was weekly so I had lots of IV's but Enhertu is every 3 weeks so you don't need it as often is I did for Taxol. Since I will be switching to Enhertu I will use my port for my infusion every 3 weeks. My guess is most of the medication I will be receiving in the future will be IV and since I have no problems with it I will keep it.
0 -
I am going to get it by IV for now and re- evaluate. The chemo nurse said it was t a problem with my veins.
0 -
I got infusion #1 today- first one is done over 90 minutes. Subsequent ones will be 30 minutes
pre-meds are oral: Zofran (nausea) and steroids. so far am fine- a little bit of nausea. Will keep track of symptoms and report back. supposed to continue Zofran regularly for day 2 and 3.
Used a cold cap as well
0 -
Hi all,
I am day 6 of first infusion. Lots of nausea and some GI stuff- hungry, can't eat. No vomiting. fatigue. I am happy to read that most people are having fewer symptoms with each progressive infusion.
I used the Paxman cold cap- first 15 min a bit of a challenge, but RN distracted me - so was fine after that
Today is the first day I feel pretty good.
One. question I had - no one has really commented on their labs being so low that they needed to postpone treatment or lower dose. I usually have marrow issues with drugs - anyone else have low HGB, white blood cells or platelets or liver lab issues?
thanks
0 -
Hi everyone, this will probably be my last post on this site. I just wanted to say thank you to everyone who has been very kind to me as I asked questions for my mom. I'm sorry to say that my mom passed away Tuesday morning due to complications from enhertu. We had alot of hope for this drug, but unfortunately it didn't work for her.
0 -
concerned_daughter11, we are terribly sorry for your loss. May your mother rest in peace.
The Moderators
0 -
Concerned-Daughter11- I am so sorry for your loss. mothers are the best and so painful to lose. I am thinking about your today and sending warm hugs
0 -
I am so sorry to hear about concerned daughter's mom. This is a terrible disease, and the treatments are not much better.
I started Enhertu on Sept 20. Didn't prepare ahead of time by getting in groceries (big mistake), and I thought after four days of eating lightly I could risk eating restaurant food. Another mistake. The food didn't seem to leave my stomach and after three hours it came back up. Two more epidodes of vomiting and today I am slooooooowly eating some applesauce. This is the worst I have felt with my treatments, but I have not had the really harsh chemos.
I wonder if I will have the courage to take anything harder than this, when it fails.
0 -
Ninetwelve- I am sorry to hear this- I think the side effects of Enhertu are all over the place. I got my first infusion on September 13. Didn't feel too good for about a week. Mostly GI side effects- Took Ondansetron as they suggested and that helped nausea- almost vomited- but, didn't now I am left with severe constipation and taking Miralax and Colace. what were your premeds? Many people adjust those and it helps a lot. there is a Facebook group re Enhertu which is very helpful. (I'm not much into Facebook- but- lots of helpful people on it re this drug)
A friend made chicken noodle soup for me which was pretty good, and cream of wheat cooked in milk for some protein went down pretty well-
AC was worse for me- but, only 4 treatments. I am hoping next infusion is better- but, who knows? Sometimes, they lower the dose or have a longer period between doses- now I am more worried about how my blood counts will be before the next infusion.
also using Paxman to prevent hair loss
0 -
I’ve been through 6 cycles now and the SE’s are definitely tricky to predict. The 1st was terrible but they got better until the 5th took me back down a bit. The latest one has been much less nausea and vomiting but came with more fatigue than I’m used to, having to lay down or rest a few timesduring the day.
0 -
Starting Enhertu in a couple of weeks. Looks like constipation and nausea are in my future. What has been your experience with hair loss?
0 -
Nopink2019- I have seen hair loss reported as between 35-49% in the studies. The primary investigator says that Pre- treated patients have more hair loss. their Destiny03 was patients who used it early in their treatment and they had very little hair loss. I think that if your follicles have been challenged before- (chemo or other impactful treatments on follicles) you have a greater chance of losing your hair. on the Facebook group for Enhertu -I have seen pictures of people who have lost a lot of hair and others saying they have lost none- I don't know their previous treatments though-
I feel like my follicles have been challenged a fair amount- so I assume I will be in the group who loses their hair.
I hate wigs and loss of privacy and I am trying cap cooling with Paxman- I don't know what the stats show with it, but, even if you lose a lot of hair with it, the follicles are less damaged and regrowth is better and faster.
Yes to nausea and constipation - the Zofran worked well for the nausea- but, causes constipation. mostly GI side effects- I felt pretty good after a week- I have only had one infusion- if you look at Mae's comments- each infusion can be worse or better.
1 -
Day 7 of my first Enhertu infusion. Woke up with side pain (liver?) and excreted pale stools. I'll be calling my oncologist's office for advice when they open.
Yesterday was the first day my nausea felt controlled, so that was a blessing. I also had more energy and was able to do laundry and make (and even eat) red lentil soup.
My acupuncturist pointed out to me that my scalp was red on top and that was an indication that hair loss could be coming. She put some needles in my head to "vent" the heat, as she calls it. I have lost hair before on top, but didn't lose all my hair. I wore hats because I think wigs are the most uncomfortable thing I've ever tried to wear.
0 -
nkb and ninetwelve, sorry to hear the se's have been so bad after your 1st infusion. Nausea sucks as does losing your lunch. I hope after this 1st week you will feel better and future infusions will be easier for you and all those having miserable se's.
I am also on day 9 after my 1st infusion. After enjoying the super energy of 2 days of steroids after infusion, I crashed on day 5 and had to take a "couch day". But at the risk of sounding like a jerk, I have had zero nausea and just a bit of constipation from the zofran premed. This is the best I have felt in quite a while. The last 6 months of Xeloda at 3000mg a day were rougher than I realized. I have big hopes that this tx will be a game changer for many of us.
nkb, thank you for mentioning cold caps. I have been super fortunate in not losing my hair so far and would like to keep it that way for as long as possible. After reading your post I made a quick decision to try cold capping as well and got my stuff in time to practice before the 1st infusion. It's a lot of rigamarole and expense (!) but I can deal with it 1 day every 3 weeks.
illimae, I've never addressed you directly before but have enjoyed so many of your posts. Your sense of humor and attitude are much appreciated! Hope this turns out to be an effective and tolerable tx for you for a good long time.
0 -
Thanks jobur and I totally agree about the steroids, that’s when I do light house/property work, like moving large rocks and painting the deck. Once it wears off, I can be found watching murder mysteries in bed until noon for a week or so. I do hope you never have nausea and that your SE’s are more reliable with each infusion. Sadly, I have both upstairs and downstairs puke buckets, ugh.
0 -
jobar - having "zero nausea" sounds encouraging to me, as I start in a week
0 -
nopink, That was my hope when I posted. I think maybe those who are not having bad se's tend not to post much, partly because they are busy living life and partly because we feel bad for those who are not so fortunate. So I hope to see you not posting much on this tthread, ha ha! Best of luck next week.
illimae, "things like moving large rocks", damn girl, your steroids were better than mine! Seriously though, so sorry to hear you need those bi level puke pans. Good to be prepared though, right? I was hoping things had improved for you after a few infusions. How is your appetite? I imagine it must be hard to get the nutrition you need if you're puking a lot. Fingers crossed En hurt u is working for u.
0 -
Jobur, things are improving, just slowing. I usually only throw up in the morning and it seems to be as soon as the first sip of water or coffee hit my stomach, I’m fine after that. Also, this last cycle I puked only every other day, instead of daily from day 5-12. So far it shrunk most brain mets by 20-50% after only 3 cycles and that’s where my trouble is, so I’m willing to put up with some annoyance.
0 -
Mae, for reals, your steroids give you she-hulk power.mine just keep me up all night posting all over these boards from inside my blanket fort.No nausea here! Just very little warning vomiting on day 4. Day 6 this time. Having some weird foot pain stumping drs and PTs. If it’s a SE though I will gladly fight through it.
0 -
Mae, so happy SE's are improving, but, most importantly, that it's doing it's job.
Kikomoon, happy your SE's are minimal so far. I hope the foot pain improves soon.
0
