Anyone starting brand drug, Enhertu?
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Thank you @stirfry for the hair info. I keep telling my family, "ten more days until I'm bald" etc. It's preparing us all. It sounds like I can have a little hope and a little hair too. We'll see what happens. I am having some itchy pimples in my scalp but I assume it's just gearing up to fall out at those spots first. Fun!
I am still so mad about that. I recently have just been able to leave the house without that stupid wiglet thing and love my thick, curly chemo hair. Pretty soon it will be blowing in the wind…again.
Yes, I have tons of historic blood work available. After my first infusion of Enhertu, the only thing that has been affected has been the platelets which is common from what I understand. I had some WBC and ANC issues with my ascites but they have returned to normal after that event. I had very, very low ANC (neutropenic fever too) on Ibrance and the filgrastim was a life-saver for me. Interesting about the trial. Have you considered/heard of the long-acting filgrastim? That was a consideration for me but instead, I just changed treatment so Ibrance wouldn't kill me.
When your MO says it's all about the blood, does she mean being able to stay on a treatment or being blood-healthy so the treatment works? Did I make sense there?
I have found other message boards out in the interwebs about Enhertu that people stay on this for 5 years at a time. They don't necessarily have a good time on it but it keeps them alive. I was very impressed by that. I would like to be in that category, thank you very much.
@soldanella thank you for your welcome to the retirement club! What was I thinking trying to end the school year with an angry liver? Well, working did make me feel "normal". And yes, thankfully it is spring and I so much enjoy my slow morning with coffee, flowers, birds and warm weather. I am truly looking forward to that!
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@dulcea thanks for the tip about the long-acting filgrastim, will have to discuss with the pharmacist. I’m based in the UK and don’t know what the NHS have to offer. I think my Oncologist is referring to staying on the treatment, when looking at blood results.
It’s so annoying about the hair, I just lost the Chemo curls and had a new bob cut. They even thinned my hair out as it was so thick.
I’m HER2+++ and had 30 to 48% risk of brain mets but they don’t check and just wait for symptoms to occur. By which time I now have a large Grape and several pips, too many for Gamma knife to work safely, so I have 8 weeks for the treatment to work. Will have MRI Brain on the 22 June. If things have shrunk enough they will revisit Gamma knife. Not looking forward to that, but after treatment I would continue on Enhertu.I’ve gone from NED to seriously reduced odds, it’s so annoying they could have done a quick CT once every 3 months, I’m told it’s not protocol! But my first thoughts are about my hair of course.
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@stirfy that is crazy about not checking for brain Mets with almost a 50% occurrence rate but “it’s not protocol”. CRAZY! I had some skull Mets at first but they never checked them again until recently when I had a bone scan. I know skull is bone and that is different than brain but that was too close for comfort for me.
I did complain of dizziness and they threw me right into an MRI to check. Thankfully nothing was there, so that is a thought for the future if it comes up again, but it sounds like they are on top of it now. Do you have symptoms?
My scalp is so painful right now. It feels like I have had a very tight ponytail in. That type of feeling. It’s a little itchy too so when I scratch it, it hurts. I assume it’s getting ready to shed. I have had some fall out already but not in big handfuls. It actually clogged the drain. How do I stop the pain? Any ideas?
I just finished a breakfast sandwich with sharp cheddar and bacon. I’m pretty upset that I couldn’t taste any of it. I noticed yesterday I ouldnt taste salt, but didn’t think much of it until today. Even my coffee tastes yucky, I live for eating so this will not be fun. I had this experience on Xeloda too, but it wasn’t fully blocked and my taste returned eventually. And no, I don’t have any covid symptoms. Does anyone else have this side effect?
Tuesday is infusion #2.
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@dulcea I, too, have a reduced sense of taste. I used to be a bacon and cheddar type of person myself! Now, my sense of taste is fine with sweet things. Very odd for me. Today, I had a Belgian waffle and the taste was spot on. Cinnamon toast instead of an everthing bagel. I have also developed a better appreciation for fruit. I hope you can find foods that you can thoroughly enjoy. Because, believe me, I understand how bitter the loss of bacon and cheddar can be.
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@stirfry That is very interesting because after not being a sweet-eater my whole life, I am now! I especially love fruit all of a sudden when I wouldn’t eat it before. And yes, I can taste them! Do you know how good oranges are? Wow!
I just wish my coffee tasted better. Maybe if I put sugar in it…..
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@dulcea it’s two weeks since my second infusion and I’m just getting a little energy back. It’s definitely affecting me more this time round. Days 7 to 10 were the worse. Felt quite sick around that time. I’ve tried to eat little and often, coffee tastes awful at the beginning of the cycle.
I have had a sensitive scalp in the past when I had Chemo 2 years ago and have slept on a silk pillowcase ever since.
When I washed my hair it looked like straw, so I have tried putting argan oil on my scalp. My hair is still shedding.I’m hoping I don’t feel sick on the next cycle. The fatigue has been incredible this time round.
@onlywhenitrains my taste changes at the beginning of the cycle then returns half way through. My one treat is hot chocolate in the evening but I now have to leave it for the first few days. I also have digestive problems.
Here’s hoping your tastebuds settle down.
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@stirfy thanks for the update. Just had my second infusion yesterday. I slept basically from 2 p.m. to 5 a.m. this morning. I think it’s I from one of the pre treatment meds for nausea. I need to go look them up. I could not even hold my head up I was so fatigued. I talked to the nurse yesterday about reducing whatever does makes me so tired because it was similar last time too. Too bad I didnt think of it before hand.
I hope we get used to this sooner rather than later. Fatigue is no fun! I just keep making things easier for myself at home. I do have lots of help but it’s hard to accept it. Plus, I don’t want to sit and do nothing. I have always been an active person who is always doing something so this is hard. It’s in my brain but not my body.
My hair started falling out in chunks on day 20. I didnt even brush my hair yesterday because I didnt want to be bald. I guess today I have to do it because it’s just falling on my shoulders anyway. Yes! I have a silk pillow case and I can say that after two nights of that, it helps!
@onlywhenitrains good to know my taste buds might come and go. I really miss my taste of coffee in the morning but I still drink it hoping it will not taste like old garlic.
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CT results back this morning. My liver is stable so I was able to get my 5th infusion. Relief all around! I've had two or three days of serious fatigue after each treatment. I was hoping I would be able to predict which days I would be down for the count, but no such luck. My fatigue is random. Fortunately, so far it hasn't hit on days when I have plans that require being upright and functioning.
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@onlywhenitrains that is fantastic news about your scan! We love stable!
That's not too bad having only two or three days of bad fatigue after your treatments? I am hoping for some type of relief from the fatigue. I didn't take my nausea meds this morning since that can cause fatigue too and so far, no nausea. Knock on wood! Unfortunately, the fatigue is here.
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I'm not on Enhertu, but I am wondering how Weninwi is doing and I know she posts here sometimes. I used to read and appreciate her posts when she was on some other threads like the Verzenio one. I know she moved to here when she started Enhertu, but I just haven't really seen anything from her lately and am hoping she's doing well.
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Currently, I am dealing with some very blurry eyes. I can't see the little birdies on my bird feeder! Has anyone dealt with this and have you found a solution? I know it's a side effect of Enhertu, but it is very frustrating. I have used a few different lubricants and relief drops to no avail. Unless I am constantly using the drops, they just don't work.
I am bald. I have a few wisps left but I just can't shave them. It happened pretty quickly too. I don't seem too upset about it this time as I was devastated to have my hair so thin before.
I am pleased that I only had a few days of fatigue from my last treatment.
@threetree I tried to search weninwi but haven't seen her post anywhere lately.
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@dulcea. I didn't know vision changes were a side effect of Enhertu! My vision had, for reasons I can't explain, gotten to 20/20 for the past year. That all changed when I went on Enhertu, but I didn't make the connection. I have been futzing around with different contact lens combos and cheaters. Right now, my best solution is to wear one contact in my right eye and nothing in my left. It's not perfect, but I can drive and I can read without cheaters. So pleased that your fatigue is manageable! Sorry about the birdies, though.
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@dulcea I am sorry to hear about your hair loss, but it sounds like you are coping better than me. I have lost around 50% and it’s still coming out. I am hoping it eventually slows down, but I have just had my third infusion two days ago, so will see. Cannot see myself wearing a wig yet.
When I last visited an Optician I was diagnosed with dry eyes. They try to sell you the wipes and drops, but he said just bathe them twice a day. I wipe them separately with clean tissues and the hottest water I can stand, in the morning and last thing at night, but they do seem more blurry towards the end of the day lately. Something you could try maybe?
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@illimae Maybe I spoke to soon about my eyes? I have been using some Visine product that covers all the bases and lo and behold, I could see the birdies today without having to add more drops! There was one day that I drove that I probably should not have! It's so nice to be able to see. Or maybe I am just far enough away from the last treatment that things cleared up. Rest assured I will continue with the visine.
@onlywhenitrains, I just got my contact lenses settled (have you tried the progressive ones?) too when my eyes went wonky, especially the right one. Maybe I should try your version.
@stirfry I think that our sisters who posted on here… including you… with the heads up that my hair would fall out in 21 days helped me a lot. It was expected and I prepared my family for it too. When it happened I was a little shocked but still, it was expected. I have bigger fish to fry. I wear a skull cap and a baseball cap in public. No wigs for me! I noticed people do a double take, but so what. Now they know my life. I know how you feel though since I was very thin previously from all the treatments. To me it just compounded the issue of having cancer. You are lucky you still have half a head of hair.
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@dulcea @threetree I was also checking to see whether weninwi had posted recently. Did either of you try sending her a private message?
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Dulcea and Vlnrph - I did message Wendy late last week and she did get back to me. I was only able to respond to her (and your messages) quite recently though, because I've been unbelievably fatigued from shingles and then getting faslodex shots and scans. I have not really posted much at all over the last week and am still on the intensely fatigued side, but improving.
Wendy says she no longer posts because she is no longer on treatment. She is looking at a few options out there, but I don't want to detail too much here, as I don't know how she would feel about it. She seems to be doing relatively well and seems to have a good handle and perspective on what she wants to do going forward. I'm also pretty darn sure she would appreciate that people are thinking of her. Thank you both very much for following up and asking if I'd heard anything back.
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Hi there…looks like I will be starting Enhertu…I recognize many of your names from the Xeloda thread…I am very sad that I am moving on to Enhertu…I know it may be silly but I don't want to look sick or feel sick…I have managed to live and work a relatively normal life so far… I don't want to lose my hair again! I don't want to get a port again! Sorry for the whining but I think many of you may understand. I will see my MO on Monday and will get the details of my treatment. My MO is very optimistic about Enhertu as well as my step daughter who is also a MO…they both feel its the best drug out there…I am trying to jump on their enthusiastic train, but not there yet. Any words of wisdom? I have read the threads…hoping the next step of this journey won't be miserable!
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@thairpist my introduction to Enhertu was not a good one since it was compounded a few days later with hospital stay and ascites (not related to Enhertu) as you probably read. After recovering from that, I feel like I can do this. I recently "retired" after my hospital adventure and after my first infusion, but I am speaking with the principal of the school to do some subbing and some data collection. I can only do so much laundry, grocery shopping and cleaning. I need to do something! Someone else mentioned on this board that they worked full-time for a year while on Enhertu. Yes, everyone is different and you have to take into consideration age, ability, motivation etc. I am the type that can't sit still! My brothers think I should fully retire and travel or do "retirement" things but at my age, everyone else is still working and I would have no one to travel with. I do notice that I have some foggy brain (stress?) but I'm pretty sure I could still manage my job.
Changing to Enhertu was the first time I cried at having to change treatment. I had three nurses walking me through the MO hallway because I was blubbering so hard! I thought my QOL would be so different with an infusion type treatment but once every three weeks is not bad. It's even easier than having to manage my own pills every day. I have not had nausea, D or C or any other outwardly terrible side effects. My fingernails are growing so strong and my skin is so soft, and you know what Xeloda does to your fingers and feet!
But yes, the hair. I don't know what to say to that. For some reason, it is not bothering me, when just having thin hair was so devastating for me before. It really helped me to just be prepared for it. Day 20 after my first infusion was pretty bad. But now I have cute hats and caps. No wigs for me although I have one in the closet. Someone else said their hair started to grow back on Enhertu, so I hope that's right. A little peach fuzz is better than nothing.
That being said, we'll see what my scans in July look like. I have the summer off to get this Enhertu under my belt and see how well it treats me and then I'll decide about work.
Welcome to Enhertu. There are some great sisters on here who can offer more advice too, since I am only on infusion 2. And I do tend to talk a lot (aka too much) so hopefully we can all help you. It's not easy changing treatments. How nice to have a MO as a family member! I'm sure you have read it all on the posts but I just wanted to restate that it isn't too bad for me. Give it some time. Are those words of wisdom?
@threetree thanks for the information. I wish her the best whatever decision she makes.
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@thairpist. I, too, was concerned about looking sick for the first time in my 5.5 year Stage 4 life. I have never had major side effects except for osteonecrosis of the jaw. I did need to get my port replaced. So far, I haven't been treated differently due to my baldness. I was called "sir" in a checkout line recently. Whatever. I warn people ahead of time that I will look more cancer-y than the last time they saw me and then they roll with it. My energy and digestion is generally good. Two-three days of fatigue per cycle. When that happens, I read in bed all day and eat several small meals. Reading in bed all day - not a hardship. I have two plane trips planned this year and I don't see any reason why they would cause any problems. I'm hoping I can stay on Enhertu for the long haul and I hope you have a similar experience to mine. Except for the port failure. But that's in my rearview mirror!
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Hi all
lost my hair last year it grew back then again in Feb this year lost it again
I have always worn scarves n hats
So after 10 YEARS this year decided to do a wellness program …
Learnt some tricks for makeup and use a suncreen
Fitted for a Wig as my 70TH WAS FAST APPROACHING
Another reason for wig when I went through airport security last year they asked me to remove my head scarf…first in public reveal of my baldness
So interstate this year wore the wig
The birthday bash was fab ...MUSICAL guys n dolls outdoor event Sydney Harbour and 2 glam cocktail bar events
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@bright55 Happy Birthday! Sounds like a you had a wonderful time. YOu sound like spring chicken!
Everyone, thoughts on ports? Do you all have one? My infusion nurse said that I wouldn't need one since I have spectacular veins. The MO wrote in my last notes that she will discuss port placement next time.
Pros, cons? I haven't don't my research yet but figured I'd get some input here.
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Hi Dulcea
No need for port yet
This year enhertu was every three weeks and now Caelyx is every four if treatment is more frequent then would change to port
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@dulcea I am not on Enhertu but I have a port that was fitted in 2024 for Carboplatin and Taxol chemos. These treatments lasted half a day each week so the port gave me a certain comfort to move without having my arm immobilized. It was installed during local anesthesia under the skin below the collarbone and it does not bother me at all. For the nurses it is simpler than having to look for a vein that is sometimes difficult to find and less suffering for the patient who has bad veins, it is also the assurance of being in a large vessel when injecting certain substances that are toxic to the skin if the needle in the arm accidentally moves. At the moment I do not use it but I have it rinsed every 6 months to ensure that it is working properly. For me it is reassuring to know that it can be used if I return to chemo. Now for someone who has good veins and whose infusions are shorter (I believe this is the case for Enhertu, the installation of a port is debatable.) I hope everything goes well for you with Enhertu
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@dulcea. I was happy to get a port since my veins are decidedly not spectacular. My most popular vein did bounce back, but it was developing scar tissue. If my veins were spectacular, I might not have been keen to get a port.
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I’ve had my port since 2017 and I love it. I find IV’s to be painful and annoying but my port is super easy. Pro’s for me are pain free and convenient. Con’s are that it felt odd for the first couple of weeks and can hurt if it’s bumped or in my case, if my small dog steps on it when I’m laying down. You also have to wear a scoop or v neck shirt for easy access.
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@bright55 that's exactly what I was thinking. Since it's three weeks apart and everything is very much healed up after a few days, I don't see long lasting scar tissue or bruising, etc. I can handle an IV once every three weeks.
@soldanella yes, the actual Enhertu only takes 30 minutes and is the very last thing they do, but they pre-treat me with an IV anti-nausea as well (an anti-psychotic!) and throw in some fluids while I wait around for the anti-nausea and steroids to kick in. Thanks for the well-wishes. So far so good on the side effects! I just hope it's killing off those C buggers!
@illimae good point about the dog!! I have a "bull in a china shop" 100-lb german shepherd. I think that's a factor when deciding on a port. Is it "taped" on to your chest the whole time? How does it stay on? That is the part that might bother me is having it there the whole time.
@onlywhenitrains I wonder if only being able to use one arm due to lymph node removal is a disadvantage over a long time thus only having one good vein to use. I also think that the doctor just follows protocol when it's really the nurses who are in the trenches and deal with veins. I am inclined to take the nurse's advice. I only get labs drawn once every three weeks too, so that's not a good reason to get one.
Thanks so much everyone for your input! I will decline the offer of a port unless someone can give me a very good reason.
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Into the eighth day of my third treatment, have been extremely fatigued. Have also felt slightly 🤢. I am wondering if the fatigue is to do with Red and White blood cell counts. Has anyone had a problem that has delayed treatment?
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