Anyone starting brand drug, Enhertu?

First, rischaller, so encouraging to hear your PET scan results!

My update: I had 4th Enhertu infusion a week ago. I started at 80%; did well so increased to 100% for infusion #2 and #3. I had first CT scans a bit early after infusion #3. Results were "stable" - no shrinkage, but nothing grew and nothing new and no evidence of ILD interstitial lung disease. My labs were mostly stable - just a slight bump up for ALT & AST. After infusion #3 my foot neuropathy started to get worse, with some pain which was new for me, and since I'm a daily walker I decided to drop back to 80% for infusion #4. The NP I saw for infusion #4 said either decision was reasonable - i.e. stay at 100% and watch for worsening of neuropathy symptoms or drop to 80%. I stopped the Zofran as a premed due to constipation. Still getting Decadron as premed and at home on days 2, 3, 4. I have never had outright nausea so far and only slight queasiness which has responded to ginger. The fatigue however is noticeable. My worst days seem to be Days 5-7, by day 9 I'm being to feel better. I'm hoping infusion # 5 (May 21) goes as well as possible since I've planned a two day trip on days 6 & 7. I have my first post-infusion cardiac echo soon to check for any decrease in left ventricular function. Hopefully echo is stable. All in all the Enhertu seems to be working and I seem to be tolerating it pretty well. I'm so thankful.

..and for me too, love reading everyone’s stories, the good, bad, and otherwise. Grateful for the sharing.

I've been getting 10mg Decadron as a premed and then 4mg at home day 2, 3, 4.

Anyone else getting this or something similar? Anyone not getting any corticosteroid as a premed?

I want to tapper off ASAP. I don't think I need it as I have not had outright nausea…some queasiness, but no nausea.

Just read about the bone fracture risk associated with a daily corticosteroid dose of 2.5m or greater. Can happen fairly quickly i.e w/i weeks.

I've also been on Zometa (bisphosphate) infusions for nearly 4 years. Long term use (some say greater than 5 years) is associated with spontaneous femoral and trochanter fractures. If taken along with corticosteroids the risk is greater.

margarita12,

I just Googled corticosteroids and bone fractures and found several statements.

The specific information about bone fracture risk due to Zometa plus corticosteroids was from the Zometa package insert:

Here's the first sentence of the paragraph.

https://www.accessdata.fda.gov/drugsatfda_docs/label/2014/021223s028lbl.pdf

5.6 Atypical Subtrochanteric and Diaphyseal Femoral Fractures Atypical subtrochanteric and diaphyseal femoral fractures have been reported in patients receiving bisphosphonate therapy, including Zometa.

I also found this from New England Journal of Medicine about a study done on this topic:

https://www.nejm.org/doi/full/10.1056/NEJMoa1916525

If your mom isn't also on Zometa, then her risk situation would be different, but reading the package insert for the specific corticosteroid she takes might be the best place to look for fracture risk info. Hope this is helpful.

Bone Scan after 5 infusions of Enhertu showed mixed results. Not sure if Enhertu is working or starting to fail. Anyone else get mixed results on bone lesions? Did you continue treatment?

My scan reads "Whole-body bone scintigraphy demonstrates no definite evidence of new sites of abnormal radiotracer uptake"...."However, there are several sites of interval increased extent and level of radiotracer uptake suspicious for worsening osseous metastatic disease involving T6, L1, L4 and left pubic bone".

My oncologist finally responded via MyChart with her opinion of the bone scan. Since last bone scan was in Nov and I started Enhertu in Feb she considers this bone scan a new baseline. She's reassured by the stable liver lesions so I will remain on Enhertu. Findings will be discussed further next infusion when I see PA.

I am nervous. I had one cycle and am now have pangs of discomfort on my right side (liver, where I have lesions) and my back (where I have lesions). Eight years metastatic and I associate this discomfort with progression. My oncologist says I need to give this treatment three cycles before being evaluated.

I guess I am looking for stories from people with similar experiences, where they thought they were feeling progression initially on Enhertu, but ultimately had a good response.

Thanks!

@weninwi Just dropping in to say I'm glad Enhertu is holding you stable. May you ride the Enhertu wave for a long time.🌸

@sondraf good luck with the Enhertu. Sounds like you are managing it well ! Yeah. 👍 So glad Enhertu is working for you. Awesome news. I did well on it for 5 months before switching to Trodelvy, which so far is working well for me. Keep us posted.

That is AMAZING & exactly the results I'm hoping for from Enhertu!!!

@mguelff sorry to hear of your recurrence. It’s a lot to process over and over. Enhertu is a good drug and has worked really well for so many. You’ll find a lot of positive stories out there and on this thread. When I was on it, the side effects were minimal, some fatigue for a day or two. Sending good vibes and positive healing your way .

@kbl hope the start of Enhertu was smooth and you are feeling ok. Sometimes day 4 brings a bit of fatigue. Sending Hugs for the journey forward.

@rlschaller Thank you! Day four is starting a little different. I’ve taken 2.5 mg of Olanzapine for two nights. I took two naps yesterday and slept 11 hours last night. Today I woke up feeling a little lopsided. It’s weird. I think I’m going to try to do it without it. I must be a lightweight. I’ll go back to the promethazine to see if it helps when or if I’m nauseous. The nausea hasn’t been too bad before taking the Olanzapine, so maybe I won’t need anything more this round.

I have been preparing myself to feel worse, but it hasn’t happened as of yet. I do feel a little weird this morning, so I’m going to lay low and nap when needed.

@sondraf I’m one week and one day behind you. Please keep me posted how you’re doing.

@sondraf I’m so sorry for what you’ve been going through. I hope the Enhertu can kick in, stop the side effects, and give you some quality time. I had been so prone to UTIs and have had so many over the years. It’s the one thing I never deal well with. There is nothing worse than that burning pain. I hope the meds help quickly for that. I totally understand not feeling well and having a UTI on top of it. I really hope you can get your hip pain under control.

I was taking Olanzapine for two days but had to stop. It was way too much for me, and I was like a zombie. I may try my promethazine instead.

Please let me know if you get any relief this week. I’m thinking of you.

Mae, I remember that seriously rough time you went through for like 9 months unable to swallow or speak and before you started Enhertu and hold on to that every day - that if Mae could make it through that (and look at her now!) I can hang on, stay positive, trust the process and believe this is going to work. The hip tumor is so large and intrusive to so many areas that even a little early shrinkage would be helpful.

I had a better night as my CBD rub really calmed things down and I was moving before bedtime and sitting in a different chair last night with better support. Need parents to bring more of that rub with them so I have a supply, it must just hit those surface nerves just right that the opiates dont. And my 4 am excursion to the kitchen for a cold pack and some coconut water didnt seem like a massive undertaking either. Maybe Im just chilled out now but thats a better state than straight anxiety!

@kbl Ive also woken up feeling a bit out of sorts, not often but some interesting dreams abound.

KBL,

Just saw your post over at Enhertu facebook. You got a good run on ORSERDU! Hope you now do well on Enhertu. I've had 9 cycles so far, most at 80% dose. I take 10mg decadron oral just prior to infusion, and no zofran because it made me seriously constipated. I swing between constipation and mild diarrhea, but it's managable. Staying well hydrated helps.

In general, side effects have been mild for me. I've never had any nausea; some mild queasiness at the beginning but nothing now. Some mild night sweats, but that has also lessened. Fatigue was worse on days 5-10, but that has gotten less too. My hair has thinned, but it's not too noticeable. I get facial flushing from the decadron, so hope to reduce the dose. My neuropathy is a little worse. The third week of each cycle is my best week.

My last CT scans showed liver tumors stable and some were slightly smaller. CT of lung showed small area of ground glass, but the radiologist said it does not have the characteristic appearance of being drug-induced ILD. I hope the radiologist is correct. My bone lesions are stable according to the CT.

I don't have a port and didn't want one, but am reconsidering because my veins are starting to object to getting poked every three weeks.

The new challenge for me is that I developed a reaction to iodine, so now I can't get CT scans with contrast for the abdomen. I developed a bullous pemphigoid rash after stupidly trying a potassium iodine supplement for about 10 days only. My oncologist gave me two choices for my every 3 month scans: MRI of Abd and Chest CT (no contrast)……or PET scan. I will still get bone scans every 4 months regardless of choice. She explained MRI of abdomen gives better detail of liver lesions and Chest CT gives better detail for diagnosing ILD, so I made this choice. Now I have to deal with two tests every 3 months instead of one test, plus claustrophobia associated with the MRI scanner.