Anyone starting brand drug, Enhertu?
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Took at extra week off due to extreme fatigue (not the kind that a nap helps) and lack of motivation- unable to muster myself to do most things. Got so that it was only a day or two of feeling good before the next cycle (I am about to do #15). Feel better after an extra week and will do next cycle with a 20% decrease in dose.
Also getting more and more anemic -down to 9.2 (from 12.4) and lots of body pains and easily injured - Motrin helps a lot with this. not sure if this is the SE- "musculoskeletal pain"- they talk about or something else.
Senna most days.
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@nkb — have you tried taking a daily Claritin for skeletal pain? It’s helped me with various chemo treatments over the years? (I haven’t been on Enhertu due to black box warnings from previous pneumonitis)
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Hi Dodgersgirl- I take Zyrtec daily for allergies already- but, have heard Claritin used for this also.
I somehow think (my own thoughts) that enhertu does something to my cartilage or ligaments that makes them fragile. but, the side effects list a very vague musculoskeletal pain.
Hope you are well!
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nkb, sorry to hear about the side effects, but I'm impressed that you're on round 15! Good response. Glad you're taking a little break and will get a dose reduction. It's so hard when you're on something for a long time and you don't get any really good days, due to fatigue and pain. I used to find that the occasional oxycodone would stop the muscle aches and help me sleep. I didn't like to take it more that once or twice a week, though because it has its own side effects.
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Thanks nine twelve- PET in September. TMs going up so we shall see. LFTs starting to rise also- first time in all these treatments. all of these SE are listed.
what are you starting?
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I'm not on anything, since my last Doxil treatment in mid-June. My oncologist gave me another four weeks off and I'll see her in Mid September, after a scan. She mentioned Verzenio/Faslodex, Piqray, and Trodelvy. I don't know if I will go back on treatment. It's easy to say "no more" when my cancer is not very symptomatic. Might be a different thing if it starts impacting my existence. But then I think about the fact that I've had nine years of pretty decent quality of life at stage 4, and what if I go back on treatment and never feel good again? I don't have the answers yet.
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Ninetwelve- I am right there with you. this enhertu makes me tired and unmotivated- like I don't want to take any more toxic drugs. so far I am bone only and none of the trials really take bone only so once they are approved- those who are bone only have no data in which to make decisions. your experience with Doxil and the fact that anecdotally I don't know anyone who it has worked on and now hearing you lost all your hair and ended up in the hospital crosses it off my list. it Only works 15% of the time- probably less in bone only.
anyway- even though Elacestrant is not robust- I am looking forward to 3-4 months of feeling good- if it works longer- great- but, no excessive lab visits, leg cramps, GI stuff, anemia, severe fatigue, high bilirubin, hair loss, cardiac ultrasounds , IVs etc for 4 months. I would like to try Verzenio- but, not sure what estrogen blocker to take with it- so many have failed. my MO is not for it- I think it has a better chance of working than Doxil. I hope that Camizestrant gets approved soon. I will buy copies of Being Mortal for my kids-
You have been stage 4 a long time.
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My original cancer diagnosis went from 3C to 4 in a few weeks time, when they did a chest xray and found cancer in my lung. It's now in bones, liver and lung and I'm getting tired of the fight. I can see how it would be frustrating to not have soft tissue to biopsy, but on the other hand "bone only" sounds like it would be less likely to have sudden complications. There really is no good way to have advanced cancer, though, and that's the truth.
Since going off treatments I've started to feel normal. Haven't quite lost all my hair. Still have scalp coverage, but it keeps falling out, and I guess I may end up calling myself "Patches" again, like when I went on Taxol. Still, I care less about my hair than my energy levels. I can always wear a hat, but I can't always talk myself into getting out of bed when I'm weary.
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Ninetwelve- I am glad you are feeling normal now that you are off treatment, it is amazing to see what it is like to not be taking these drugs. I once had 2 months off after Ibrance and it was lovely. I hope you can do your favorite things while feeling good!
It is true that bone only is usually more indolent- but, I also have bone marrow mets. I did have marrow failure march 2020 after a virus, getting off Afinitor and starting tamoxifen- not sure which thing caused the problem - but, I needed blood transfusions every few days for 2 months until the Xeloda kicked in- it was pretty scary- so that possibility is always in the back of my mind- Is the weird lab from the drug, the cancer or the bone marrow struggling.
I do feel better with the 20% reduction so far-
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nkb, Sorry about my ignorance on bone marrow metastasis. Those two months of blood infusions must have been a scary development!
I'm glad the dose reduction on Enhertu has helped reduce the side effects, and Elacestrant sounds almost too good to be true. We don't ask a lot: just effective treatments that don't make us feel like death warmed over.
Yesterday a friend drove me out to the coast and we had a great day wandering over beaches and wharfs, eating and drinking whatever we wanted, and pretty much acting like healthy ordinary people. It was wonderful.
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Ninetwelve- that sounds lovely! The air by the sea is so invigorating.
I feel much better- still need the motrin - helps with muscle pains and "yuckiness" took a 2 mile walk and felt good.
Yes, my hemoglobin got down to 5.8 by the time I got the blood- death warmed over for sure- although I got used to it in a way. there was a blood shortage due to the pandemic- so a few nurses got a little annoyed- but, my MO warned me it would take weeks to months. My 75 year old DH got to find out that the Red Cross really likes his blood- it has some special antibodies! haha
Cheers to good days!
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Not an active site- but, am now off Enhertu. My PET is good, TMs declining but, bone marrow full of cancer and I have hemolysis again- my MO who is usually optimistic seemed more worried this time. hemolysis is rare
also have a fracture of L3 which is very painful and I can't really walk or stand.
getting a port, and Gemcitabine and if I pull out of it- Elacestrant.
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nkb,
I'll keep you in my thoughts and prayers. How long were you on Enhertu? Hope the Gencitabine works for you and you're able to transition to Elacestrant. That thread also is not active, but since I just started the drug I've been posting my experiences.
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Weniwi- i am really looking forward to changing to oral.
first I am having radiation for the fracture pain
I took 16 treatments of enhertu-
Thank you for thoughts and prayers- I will be following your journey on Elacestrant and hoping for great results! and few side effects of course.
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Hi lovies! Since the THP has now failed, I get to start Enhurtu on Thursday. Dr prescribed 3 days of dexamethasone to take day 2-4 after the treatment. Is that normal??
Not looking forward to this drug, but hoping it’ll clear up what’s in my chest!!
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nkb, sorry to hear about your fracture and the hemolysis. I've had my port for nine years now. It doesn't give me problems, and I'm grateful that I haven't had to get chemo through my arm veins. The surgical procedure was fast and the aftercare was easy.
weninwi, I hope to join you soon on the Elacestrant thread. I'm still waiting for the financial aid to come through. It's been ten weeks since I've been on any treatment now.
hi catfurr. I did not have dexamethazone with Enhertu, but I also had a lot of fatigue while on it. Maybe the steroids would have helped me. You should watch out for the side effects, but if those are minimal, then I can see some advantage to adding it to the regimen. And if the side effects are awful, then you can talk to your MO about eliminating it.
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Thanks, nine twelve! I hope you get the financial aid for the Elacestrant! I can't wait to join you. I think when the drug is first out they are generous, they want doctors to try it so don't want $ to limit the number of patients who take it.
Catfurr- I got 12mg of dexamethazone and 16 mg of Zofran orally as my pre- meds- I never changed that- I took zofran for a few days at home- but, not more steroids. after awhile no nausea and every cycle had a new surprise- good luck.
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catfurr, I only have dex (steroids) as premeds right before my infusion but I have heard of some others taking for several days. What I hear about the latter though, is mostly about difficulty sleeping.
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Illimae,
Is the dexamethasone that you take as pre treatment oral or IV? Thank you.
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Its IV. I get it regularly due to my history of severe reactions. I have for energy for a few days but can sleep without issues.
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Catfurr- for Enhertu I take 2 dexa (steroid) pills and one 8 mg.zofran (anti-nausea) pill at the clinic that they hand me, just before my infusion. I take other zofran as needed (I got 4 mg. pills to help reduce constipation side effect) which I usually take on different days for the next week. Everyone responds differently, I did as they suggested initially but worked it to fit what worked for my body.
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Hi there,
I started Enhertu just over a day ago, vomiting main issue, had appetite but nothing stayed down much, slept lots overnight. Upset stomach like gas cramps an issue right now, however I did have liver resection in May and just got over a bile duct blockage before starting this treatment so my stomach has been very wonky for a while. My hope is for some results as well as not too much fatigue or hair loss, this will direct my decision to continue. As mentioned by many, such different individual reactions! Bit of a roulette roll. Best to all.
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Not sure why this thread isn't more active. Here's a good summary article about Enhertu (Trastuzumab Deruxtecan) from Practice Updates, Oct 16, 2023.
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Maybe not too many on it? I was on it for a year, moving to Gezmar now. Not much here on that one either.
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goldie0827,
Thanks for responding. A year sounds good. How were your side effects? Did you lose your hair? Were you given any pre-infusion treatment(s).
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Hi All,
Just thought I would give a quick update, as the topic is not that active, as others have noted.
I just had my 9th cycle yesterday. To be honest, side effects are a bit all over the place. I usually feel OK days 1-3. Low level nausea shows up on day 4. For the most part I can manage it with an Olanzapine before bed. Usually take that for 3-4 days. I have a few occasions where I will have a really bad day happening somewhere between day 7-9. Brutal headache, significant nausea, can barely make it out of bed. Doesn’t happen every cycle. The last three cycles have actually been pretty good with no “really bad days) 🤞The fatigue can be significant, and I have lost quite a bit of hair. Not all, but for me, a lot.
I’ve had two scans since I started Enhurtu, and the concerning nodules in my lungs have shrunk. Next scan is November 22. Already starting to get a bit anxious.
Happy to answer any questions, if I can.
Anna
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Weninwi, my SE's were practically nil. My hair thinned alot, but I did not lose it all. Had premeds in the beginning, steroids and anti nausea. Eventually quit the steroids, they weren't doing anything except keeping me from sleeping. Never got sick either, not even nauseous.
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goldie0827,
Did you have a port? If not were the infusions hard on your veins? Thank you.
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Weninwi, I do have a port, but just got it last Dec. I've been in active treatment for 9 years, with only 1 arm available for IV's. I handled IV infusions just fine for a very long time. I will say, a port is just so much easier!
Sorry for the delayed response…..I went into the hospital Oct 20 and just got out!
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goldie0827,
Thanks for responding. That's a long stay in the hospital! I hope you stabilize and your new treatment gives you even more time!
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