Anyone starting brand drug, Enhertu?

@going2beatthis thanks for the support.

Three days ago I had Gamma Knife surgery, it went well. It can cause tiredness, oh well. So I am determined to fight this from all angles. Now need to be patient, been told three to six months will show improvement. Next Enhurtu treatment on Tuesday.

I posted here almost exactly a year ago to say hello since I knew Enhertu would be my next stop as second line therapy when my first line (THP) protocol failed, and here I am!

On my June scans a slightly enlarged paratracheal lymph node they had been monitoring looked to have increased in size so I had a biopsy and no big surprise to find "scattered groups" of malignant cells. I had a good run on Phesgo (Herceptin + Perjeta) and Ibrance…..44 months, NEAD for about 38 months.

Continuing Ibrance & anastrazole since all other areas, including past lesions, are inactive except this one lymph node. Because of the heterogeneous nature of breast cancer, I and my oncologist agree that I have cancer that is largely responsive to hormonally based targeted therapies, as well as Her2 targeted therapies. I am Her2+, but I also have a very high ER+ percentage of my cancer cells…almost so high as to be just as much ER+ as Her2+.

Started Enhertu in June and I'm a week out from my second infusion.

To give a different perspective than most on here, I have noticed zero hair loss. Not even increased shedding. I noticed that many who post in this thread have experienced that, but so far I have not. I figure if I make it another 2 weeks to my 3rd treatment without hair loss or shedding, then I likely am not going to have that as a side effect. Before starting, I asked my NP if any of my docs patients on Enhertu had experienced hair loss and she said that if they had, she hadn't noticed, so she didn't think so. I think they have several who have been on it for a while before me. I

I WILL say, however, that the severity of the nausea has been quite unexpected. I have been on some intense chemotherapy in my lifetime, and this takes the nausea and GI upset cake. Could also be amplified b/c the Ibrance messes with my GI system already, but nonetheless, it has been intense and a bit of a surprise. I have tolerated all of my treatments extremely well in the past, so the nausea that wasn't being controlled well with Ondansetron and Compazine has come out of left field for me.

I had a consult with my care team about it this week, and we've got a game plan. What worked this time to get me back on track (unfortunately after the fact) was Olanzapine and IV fluids, which I came in for twice this week. I had horrendous diarrhea and went on a long walk in the Southern heat and got myself pretty dehydrated. I work out a lot, so I was probably already a bit dehydrated coming into treatment my treatment days even though I drink a metric crap ton of water on the regular.

Olanzapine + fluids has snapped me right out of it, though. I was like a wilted, barfy feeling flower that perked up after a good shot of water. Ha! My sodium was quite low, too.

Going forward, on my upcoming 3rd treatment I will have 1 bag of fluids at time of treatment along with my premeds, I will take Olanzipine days 1-4 post-treatment, and I will come in on Day 2 or 3 for prophylactic fluids again.

Infusion nurses spoke at length about how Enhertu is considered "highly emetogenic" and is harsher in that department than many traditional chemotherapies. That made me feel better as I was beginning to feel like a real wuss.

Anyway, long post. I'll get scanned again in about 6 weeks to see if that lymph node has shrunk, and if not then I'll have it radiated as it could be an isolated "rogue" spot since everything else in my body is quiet and has been for nearly four years now.

I'll update how my prophylactic regimen worked after my next treatment in a couple of weeks….and if my hair does indeed start falling out between dose 2 and 3.

@onlywhenitrains it’s interesting to hear that your hair has started to grow back. I live in hope, but am just about to start my fifth infusion. I still have bald spots. I wonder if the hair gets used to the ⚡️ in 🕰️. I was so grey when I had a number 2 cut, the hair I did not loose (and is still growing very slowly) I dyed with Henna. It’s now bright orange. I have been wearing a wig.

I was told by the Vascular Interventional Radiologist who did my kyphoplasty last week, that I am going to need radiation treatment to T12 to completely destroy any cells that the ablation did not take care of. When I mentioned it to my MO, she said that she would want that to only happen on a week before an Enhertu infusion. That would mean either the week of 8/4, but since I can't get an Thoracic and Lumbar MRI done before 8/1, that is not going to work. That means waiting till the week of 8/25, in which case I am wondering if I should wait till after my infusion on 8/12 to do the MRIs.

Has anyone on Enhertu needing radiation ever heard of that restriction from their MO?

I have received two different pieces of advice for pain relief. Tylenol from the doctor and Motrin from the NP. My platelets are fine so I can take the Motrin. The NP suggested not taking the Tylenol due to LFTs (stable but still a little high). Red cells a little low but nothing concerning. What advice has everyone else received?

My hair is definitely growing back. I just returned from a family reunion. The reunion was wonderful, but the travel was horrible. Delays, cancellations. We didn't get back to Louisville until two days after our original schedule. My sister commented that my stamina was as per usual. True! There was a lot of stress and I didn't have a dip in energy. On a funny note, when my husband picked me up at the airport, he forgot that I had no hair and when a woman came out of the doors with a headscarf, he didn't realize it was me! I've been bald for five months. He's special like that.

@dulcea just had treatment #5 day 10. Had Gamma Knife treatment the week before, it turns out no washout period required. I need to change my Oncologist. Leading up to treatment day I was on Steroids for six days, so already lack of sleep. Treatment day was a bit of a nightmare, they said my bloods were one day out of date. It delayed treatment while they did another blood test. Took 6mg steroids on day 1 then 4mg for 3 days. Now sleeping better. Yesterday I came over extremely fatigued and realised it is the start of the Nadir period. I am wondering how low my white blood cells are. Does anyone worry about being immunocompromised around this time?

My blood sugar increases for the first six days. The Oncologist says the steroids will do that. I am also pre diabetic. I am also awaiting a referral, but in my case I need to lose weight fast. I have a fatty liver, and it would be affected if I had to move on to a different treatment.

My hair seems to be growing back, at different rates, but like you I also lost more hair in different spots.

I have a busy August to look forward to. We are taking two of our Granddaughters on vacation the day after the sixth infusion. Holidays are a great way of escaping, don’t you think?

@dulcea. I asked my PCP on Mychart if I could have my statin prescription upped to three months instead of one. They said I needed come in. I was all, no, look at my results. I have blood tests every three months, echocardiograms every three and CTs and bones scans. If you want to add a lipids panel to my usual tests, please do so. Otherwise, I do not need to see you. Their response was to up to prescription to every three months. Thank you. I would say we do not need to go in on a yearly basis unless there is something non-cancer related that we are dealing with. Who needs more appointments? My osteonecrosis is being managed by my periodontist. My anemia? Doesn't seem like there is much to be done and I'm okay with that because I don't feel it. Like I said above, my stamina is normal. As in the days of Ibrance and prior to my diagnosis.

@dulcea the steroids were post Gamma as a precautionary measure, in case of Endema flair. Next time I will not have that complication.

@mkestrel My most recent Signatera results just came in. I went from 124 to 7!

Hi All!

I have completed 2 rounds of Enhertu and will have my 3rd tomorrow. I lost most of my hair (definately patchy) so we shaved my head. The hairloss thing is really hard this time…I think fearing I'll be bald the rest of my life is daunting. I have also gone in for IV fluids and Olanzapine which has really helped with my nausea. I pray my treatment tomorrow will also go well. I fractured my hip from sitting on a chaise lounge on my patio because the fabric tore. I didn't fall thru, I just tweaked my hip and it fractured my lesser trochanter. Fortunately no surgery is necessary and now after 6 weeks it seems to be slowly getting better. This is a crazy life for sure but praying it gets easier with each treatment!

@onlywhenitrains is it coming back like little white down feathers? That's how mine came back after my first chemo 8 years ago. I have to tell you how encouraging that it!!! I can't imagine being bald the rest of my life.

My tumor markers dropped from 107.9 to 74.4 this time which is very encouraging since that was only after 2 treatments. My MO was also very encouraging! Thank you for your response!!!

@onlywhenitrains I did have that same thing when I finished treatment last time…did you take any supplements for hair growth? I have been trying to do some research I just don't know if they would work from hair loss from while still taking the treatment! Do you have any other side effects from treatment?

@thairpist My dermatologist recommended Nizoral (ketocanazole-for dandruff) to prevent hair fall. I also found a study with "caffeine stimulating scalp treatment" (amazon - the inkey list) which the study found was helpful for thinning hair, but again, neither were specifically for people on treatments.

I use the dandruff shampoo now and used the scalp treatment when I was on Verzenio and Faslodex but I can't say it helped. Good luck finding something and if you do, let me know!

@more_cowbell Great news about your hair and your improved reaction. My fatigue is gone, but I do still have mild C after each treatment. Lasts about 2-3 days. I want to limit my pill intervention for such minor issues and it's manageble. My scans were good. Best wishes that your scans will be good, too, and you can stay on this regimen!