Anyone starting brand drug, Enhertu?

@stirfry I also have never had to delay treatment due blood work, but I am anemic. So far, no fatigue after 5th infusion. I did have fatigue issues after the first four. I hope I'm not jinxing myself by saying this out loud.

@going2beatthis I do not use lidocaine for my infusions. The stab is only slightly more painful than a blood draw and it lasts for a second. Re: port placement. They will sterilize the site so you don't to treat your skin prior to the surgery. Re: dry mouth. I had radiation on the side of neck in 2010 for a different cancer and I used Prevident toothpaste. I recommend it. Best wishes for no more progression!

@going2beatthis

No shower precautions but I think the post surgery bandage stays on for a few days, so maybe avoid getting it soaked. I use the lidocaine cream before infusions as I don’t like even a tiny bit of pain but I have forgotten and it was ok, just not preferred. I found that the cream is best for 30-90 minutes, so that’s the window I use to apply it. I also use a small square of “press n seal” plastic wrap to keep the cream in place and not smeared or rubbed in. It sticks to the skin around your port really well.

@stirfry hmmm …. interesting that you are sick and fatigued for the first time now and 8 days away from treatment. Could it be a virus/food poisoning? I just dealt with that myself last week. Are your labs that low? I notice you posted this a few days ago. How are you feeling now? I hope this stuff doesn't get worse as time goes on!

@going2beatthis nice to see you again. Or maybe not since it means you are off the last treatment. Good luck with your port today and infusion tomorrow. Let us know how it goes. I found it helpful to read everything they gave me about Enhertu.

@going2beatthis The side effects haven't been as bad as I expected. I go for my third treatment tomorrow. We will be treatment twins!

No nausea or D but a little C at the beginning but I also had other things going on so it may have been from that. It's nice to finally have normal bathroom trips. Verzenio almost killed me with the D. Of course I have no hair but it isn't bothering me. I think it's because I don't see myself all day long. The treatment tomorrow I'm going to try not to take the nausea meds since they make me drowsy, even with the steroids. There is a little fatigue but I can just lie down whenever I need to. I'm not sleeping all day or anything like that, but I am sleeping very well at night. I can't find words as well as I used to but I'm not sure if that's due to stress or the treatment or just my age. My fingernails have grown back so strong and beautiful. Verzenio and/or faslodex made them look so awful and they were paper thin. I have dry eyes which has been a pain but I found some visine product that I use often to combat that. I have also used a product called biotene losenges for dry mouth. That brand has other products as well. About a week after the last treatment I also acquired thrush that was pretty bad. The nystatin cleared that up quickly. It is a common side effect. For me, it has been tolerable. I hope you get few side effects too. It's always hard changing treatments.

@going2beatthis thanks for the brain info. I hadn't come across that before. When I started taking Xeloda, I had the the same issue but it seemed to pass. I hope this does the same thing!

@trhairpst. Going in for my 6th Enhertu infusion tomorrow. No fatigue after Treatment No 5. Looking forward to a family reunion on Lake Champlaign at the end of July. I feel confident that I can handle the plane trip and car travel and enjoy all of the water activities. I will protect my scalp of course. From what I can tell, it's not a done deal that hair loss will happen in this treatment.

Even though I've been Stage IV for over 5 years, Enhertu is my first experience with being on the chemo floor. I'm at the Univerisity of Louisville and the floor is large with many pods of four in chairs. Every pod of four has been so different. (Six infusions so far). I can't help but listen in on conversations the patients have with the nurses and those that the nurses have the other nurses. A lot of patients spend all of their time on phones or devices These overheard conversations are more riveting than anything I could find on my phone.

@dulcea I have just had my 4th infusion yesterday at a reduced dose to 80%, because of fatigue. My Oncologist believes it works just as well. I was given the final decision. That was scary being given the choice, as I have just been told Enhurtu is doing its job. I have been offered Gamma knife because of shrinking of Brain Mets. I would have to have a washout period of Enhurtu first, then return to treatment after Gamma knife. Will discuss with Neursurgeon further next Monday. So lots to think about.

I have finally cut my hair (no2 cut as advised). What was left was totally Grey, so I applied Henna as I am expecting the rest will fall out anyway. The hair that’s left is now bright orange 🤪🤪🤪. Hats don’t suit, so I now have 2 different wigs that I’m trying to adjust to. Been out three times now in Public with one on.

Will report back about fatigue this time round. Bloods were fine by the way, except one abnormal finding on my liver function. 4th infusion still went ahead. Sorry to hear you are now suffering from fatigue. I was suffering fatigue even on the steroids.

@going2beatthis the washout period is to lesson the chance of necrosis risk after Gamma knife treatment. Apparently can occur six months or more down the line. I will find out more on Monday. Apparently the wash out period leaves me at risk, as no protection in the rest of the body.

Does anyone know how long the official wash out period of Enhurtu is, before Gamma knife treatment commences. I have not been able to find out the official answer?

Have been focused on hair loss and extreme fatigue, so failed to mention mild sickness sets in on day seven and lasts three days. Also get constipation because of steroids and sickness tablets. I guess I’m still adjusting? I am hoping for long term response on Enhurtu, as I think we all are.

@onlywhenitrains - I have only had 1 treatment. Started Xgeva in April of this year after my new MO suggested it due to more bone progression.

@dulcea how are you doing with the fatigue? I don’t appear to get extra energy whilst on the Steroids. They just disrupt my sleep, I only get about six hours, and need at least eight. I am definitely getting Chemo brain fog. I am finding a slow downward drain on my energy for the first 10 days or so. Not picking back up until the last week before the next infusion.
Five days into forth infusion, with reduced dose. Will let you know how things go.

@stirfry the fatigue lifted the day after I complained about it, so day 10 I was back to “normal”. I will keep the reduced dose in mind though. It is very frustrating to be laying in bed so much. I stopped taking the Zofran during the 3 days afterwards because I don’ get the nausea but I don’t want the added fatigue either. I do take one at night to counter-act the steroid and help me sleep. Does it make you tired? That might be an option for you at night. I am DONE with this brain fog! It’s embarrassing! I’d say it’s worse than losing my hair! I am repeating stories, trying to find words and forgetting peoples’ names! I was considering subbing in the fall but with this mush for brains, I would hate to have a second grader school me at math! In the meantime, I am reading and doing crossword puzzles with hopes that something helps.

@thairpist I hated to write above that I don’t get nausea on Enhertu after reading your difficulties. Did you have neutropenic fever and get Neupogen or did they just give you hydration? Maybe you can discuss a reduced dose with your onc too. I hope you continue to get better as the days go on.

@thairpist coincidentally, I also had my third-ever UTI shortly after my first Enhertu infusion. Interesting.

I would say hydration is a good start. I'm sure they load you up while you are there as well. I get IV hydration, IV nausea meds and finally, in the last half hour, is when I get the Enhertu. I hope you continue to feel better.

@stirfry - so glad to read that you are responding well to treatment. 👋💗