Anyone starting brand drug, Enhertu?

@weninwi I totally understand. I stopped Enhertu because I was in bed more than I was out, and the nausea was horrific. Knowing I really needed a port as well was another deciding factor. It’s a hard decision to make, so I am here if you have any questions, but it’s definitely not easy. I know there were other things I could try, but it all had to do with infusions and chemo, and I just didn’t want to. The one thing for sure I know is every person must make the decision on their own. I am at peace with my decision. The other thing, which I won’t be considering for me, is you can start and stop hospice if something comes down the pike or you change your mind. I did decide to do it to have them available at any time.

I’m sorry the steroid gives you such issues too. I hope it can be a low dose to help with your lungs.

I’m doing okay so far. It’s been a little over 17 weeks since I stopped treatment. I’m still maintaining my weight and am able to eat. Those are the things I’m looking for in starting to decline because the mets are in my stomach. I am having slightly more pain but still not bad enough to go on pain meds. The hospice nurse comes once a week to take vitals and discuss anything I may need. It’s been such a nice break from having to travel to the doctor’s office. I don’t regret the decision I’ve made and know it’s definitely not for everyone.

Hugs.

Kris

@weninwi I’m so sorry, Wendy, you had to stop the Enhertu. I know some really hard choices are ahead. As I started to think about stopping, I was still on Orserdu. I knew it had most likely stopped working, as my tumor markers were rising, and knowing I was not looking forward to Enhertu, I had time to process what I wanted to do. I started thinking about it the last month on Orserdu and the two months on Enhertu. That is definitely not the same as stopping a medication and having to decide whether to keep going right then and there.

I will tell you we have a spring/summer place in North Carolina, and I am hoping to get up there in late February or early March, of course, depending on how I’m doing. All I will have to do is be discharged from the hospice here in Florida for 24 hours and be readmitted to the hospice in North Carolina. When I first got off treatment, I did meet with a palliative care nurse from the hospice in NC, and so I already know who it will be. If you make the decision to go on hospice, you can have it wherever you are. I say that to see if maybe that would be able to help you get to Arizona. One other thing with hospice is you can go on and go off if you decide to change your mind and try a treatment.

I hope you can go on another treatment if that’s what you want. And I am here for you if you decide to go on hospice. It’s such an individual choice. I shed a lot of tears when deciding.

You are in my prayers. I’m sending you a big hug.

Rhonda,

Thank you so much for your kind comments. I'll check the Taxotere discussion. My MO specifically said she was offering me single drug treatments, not combos, and I didn't ask her why. I will ask her about Docetaxel, but will have to be careful with my wording given past problems with communication. I did ask about Trodelvy (was not offered) because many women start it after Enhertu and she said she thought it was more difficult to tolerate. Of the three choices she gave me I'm more inclined at this point to choose Eribulin, but neuropathy is common and can be significant and I already have neuropathy. The other thing about all these chemos is the high likelihood of loosing my hair. I've never lost my hair yet, it's thinned, but I still have hair. I know it's vanity, but I cry about this as it is one visible sign of some normalcy. I really liked your description of the process of adjustment when starting a new treatment (tears, tiredness, hopelessness, then hopefulness, joy and another 3 month bucket list!). I hope I reach that point again as I think reaching a decision about Hospice will take more than a week or two.

Wendy

@rlschaller Thank you, Rhonda. 💕

Finished second round of Enhertu four days ago. Hair starting to fall out but otherwise no side effects. I got a port after 5 years on Ibrance. Truqap failed after three months!

Liver mets increased, but bone mets stable on scan, so on to Enhertu.

I'll report after next scans. Not scheduled yet. I'm also dealing with osteonecrosis of the jaw after 5 years on Xgeva. So far, no complications or pain from that, but I know it will be a factor in QOL considerations down the line. I really appreciate all of you posters here being up front and open about end of life decisions and side effect experiences.

@kbl. I am HER2-. I'm sorry I don't have insight into side effects depending on receptor status. It seems like we have had similar journeys. Several years on Ibrance and Letrozole. Mutations found. Started therapies based on mutations (Truqap was for PIK3). I was doing well on Truqap, but my liver tumors grew in the three months I was on it. I don't know what it's store for me if this doesn't work but I am getting my affairs in order. I had a second liver biopsy (on the same day as my port placement!) and my oncologist is going to use the new tissue for more evaluation. I wish you the best.

@stirfry. I finished my third dose of Enhertu as a third line. I am tolerating it very well. No side effects at all except for hair loss. Same dex regimen as you. Scans should be scheduled soon. If I get good results, then I have confidence I can keep on with Enhertu for a while without loss of QOL. The port I had installed for Enhertu shifted and I'm getting it replaced before my fourth dose. Oh, well.

Here we go…. I start Enhertu on 5/13. I have been very depressed thinking how terrible this drug will be but after reading through these posts, I don't feel as bad, so thank you for posting your positive results. I do see the posts who have a hard time on it too but the fact that some don't helps me a lot.

I am still working as a teacher and hope to be able to continue to work until 6/16 when school is out. The MO said I should be able to manage that. I also talked her into starting at a lower dose for side effects and for managing life better until school is over. I would hate to have to leave the babies after spending almost an entire school year with them. We'll see what happens.

This doesn't seem to be a busy topic, but I am here to spice it up!

@dulcea I was on Enhertu for 6 months and it was relatively easy with minimal SE. Every body is different and responds in its own way, so it’s always hard to predict. I worked full time the whole time. ❤️ good luck to you and @onlywhenitrains wishing you a long and easy ride on this treatment !

@dulcea i know it’s hard when treatments fail and you start a new one! I’m starting my fourth line of treatment on Wednesday. All we can do is keep the faith, and honor our emotions, and then move on. It’s not easy, but I think having a positive attitude is super helpful. Not denying the sadness or the anger either, but also not getting stuck there for too long… at least that’s my view lol.

Fingers crossed for you and @onlywhenitrains for minimal SE and along runs on this line of treatment. Hugs to all ❤️

I have serous endometrial cancer . This was treated with surgery for a radical hysterectomy followed by chemotherapy and then radiation. My subsequent pet scan shows no cancer in the thorax but it has migrated to my lungs. Tuesday I start enhrtu. I'm a bit afraid after reading all the negative side effects.

Ladies,

My first infusion yesterday and I didn't cry! I thought I might but the nurse was great which helped and I think I hit that spot where I am not as negative and am moving on.

The first infusion they also gave me anti-nausea drugs and made me not able to drive. I'm glad I had my son drive me at the last minute because the doctor said I would be fine driving. Great. I also slept like a log last night.

Today I have felt the best I have in the last two weeks! Crazy! Of course I was still dealing with fatigue from Xeloda but had some terrible belly pain going on. Both of those seem to have decreased overnight and I thinking it's the steroids I take too. No nausea either but am medicated for that too. I feel like I had some water retention in my legs and feet but has mostly subsided over the course of the day. I just had to come back here and give my positive outcome on my first 24 hours. I didn't leave the infusion room with my blood boiling and puking my guts out.

@ellen199 best wishes for starting Enhertu and having minimal side effects.

@onlywhenitrains when did you notice your hair starting to fall out?

@onlywhenitrains. I am two days from my second treatment and my hair has started to fall out. Do you mean baseball caps with hair attached? Or is your hair just thinning? I have thick hair and two years ago on Chemo I cold capped with success. This time I was unable to, as I have brain mets. Otherwise no major side effects. Slight constipation for the first few days, which is a first for me. Then diarrhoea soon controlled by loperamide. My sense of smell was heightened, and I went off ☕️, but just ate my way through. Will have to see what surprises if any the next infusion brings.

Just an update with my few days from hell, which really isn't related to Enhertu. Ascites sucks! I'm never doing that again!

I was so proud of myself for having a good few days after my first infusion. My abdomen had been bothering me for a few weeks prior and had been to the ER for it. I did have mild ascites at the time and the MO said it would not be causing my pain. What does she know anyway? Jeepers! I waited three days to get help with my water baby thinking it was constipation or something else. Big mistake. That's taken care of.

I had to finally retire. I was trying to make it through the end of the school year but I am happy to not have to wake to the alarm clock anymore. Very excited for this part of my journey. Just watching the flowers grow and and patting my dog.

Anyway, I really need to do some research on this stuff and what to watch for like platelets etc. I have been neglectful about this when I am usually very informed. Maybe I am just sick of the "C" word. The good news is that my liver numbers are dropping too.

Edited: thanks @onlywhenitrains thanks for the feedback on the hair. I'm watching the calendar for the 21st day when my hair will start falling out. It is great to have the heads up (LOL) on that and not be surprised when it happens. 11 more days! I planned ahead and did some wig shopping a few months ago when my hair thinned a lot on another treatment so I have stuff in the closet, but wigs are awful and I think I'll go with a cap or scarf like you.

I hope everyone is doing well.

@dulcea Oh dear, I'm so sorry you had to go through that with the ascites and I hope you won't have to do that again...at least the good news is less discomfort and lower blood values.
Welcome to the retired women's club. I particularly appreciate these mornings when we wake up without stress, and I take the opportunity to do some positive visualization or even meditation. Taking the time to watch the flowers and my vegetable garden grow is also very pleasant. Rest well after all those adventures in hospital.

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