Anyone starting brand drug, Enhertu?
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Hi Illimae , congratulations on being a stable mabel. happy dancing for you.
I have CT and MRI scans next week . Just in time as I have a return of a rash that I have had on 2 previous occasions when I have stopped responding to medication. Scanxiety is a real thing for me at the moment as I am heavily pretreated having had MBC for almost 10 years. I dont know what will happen next if I have run out of time on Enhertu.
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Wishing everyone well on this regimen. After seven months on Enhertu, my scan last week shows everything stable except for two new 1 cm spots on my liver. I'll be switching to something else. My onc wants to give me Piqray/Faslodex, but I'm worried about the side effects. I don't think I can manage diabetes and cancer at the same time. I have no home support and I don't cook. I've already had Xeloda (also didn't work on my liver) and Taxol (worked on liver, but not on local recurrence, which was taken care of by radiation.) My doctor also mentioned Aromasin, but I don't know anything about that one.
Feeling low, and disappointed, as I do whenever I have to change a medication. Even the ones I didn't like.
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ninetwelve, It is scary when we have to change treatments, fear of the unknown is horrid. I hope you get to see your oncologist soon and she/he can offer you some hope with a new to you medication. Hugs if you need them and my best wishes . Keep us/me posted.
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Illimae~ So happy to hear you are stable and thrilled to hear you have now been on this tx for a full year. Long may it continue!
Ninetwelve~ Sorry to hear you are moving on to a new tx as that is always a stressful and discouraging development. It sounds like this drug has been difficult for you, and I hope you will find the change to Fas/Piqray to be an improvement. I did that combo for over a year and found it fairly tolerable. My glucose went up on Piqray, but never to the point of needing meds, so hoping you will be lucky like me. And keep in mind that se goes away when you stop taking Piqray, so no need to worry about long term diabeties. If you haven't had Fas in the past, you will want to do some reading on that thread to make the shots go easier. I was on Fas for years, so feel free to pm me if you would like to hear my tips. Best wishes to you my friend!
Denny10~ Wishing you good results on your scans next week. Fingers crossed that rash is nothing and you can continue on this tx. I am in my 9th year with mbc, so I can relate to the worry/fear of just what the next line of treatment might be.
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Thank you, Denny and Jobur. I'm currently on my 9th year of MBC as well. It was easier in the beginning.
Here's a question about Piqray, if it's not too off topic: From what I could tell, those who did okay on it were people who also followed keto or low carb diets. Any suggestions on a particular book, website, or program that would help me to eat like that (so different from my current high carb meals.)
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denny10, I share your scanxiety. I have so little energy, no appetite &my breathing has gotten more difficult as my lungs fill up more often. Gives me little hope that this drug is working for me. My next scan is in a month. Good luck with yours next week.
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Thanks for the good wishes.
Ninetwelve, I was on faslodex for a few years, painless injections and no noticeable side effects. If you do transfer to that ,I too am happy to answer any PMs.
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Good luck, Denny with those scans!
After reading the entire Alpelisib thread, I'm leaning towards going for my onc's other suggestion, Aromasin, which I haven't had yet. I have done Faslodex, combined with Ibrance, and progressed on that. One thing that gives me pause is that I have the FGFR1 amplified, and there was an alpelisib study done that concluded "Among evaluable tumors, those with FGFR1… did not receive clinical benefit."
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I had my first infusion of Enhertu and it was much rougher than I thought it would be. I haven’t done IV chemo since my original diagnosis in 2014. This is my 2nd line because iBrance/faslodex didn’t work. The terrible nausea, diarrhea and unwell feeling got better after about 8 days and 3 rounds of IV fluids. I saw my oncologist yesterday and she encouraged me a lot saying we could tweak a lot of things. Has anyone had any success with IV fluids and IV zofran a few days later? She also prescribed olanzapine? I was just crushed that my side effects were so bad for so many days. It’s day 10 and I’m feeling much better but not back to normal what ever that is lol. My son came home from college for Mother’s Day and I was sick in bed all day, all weekend really. I’m hoping this gets better. Does Olanzapine have any side effects? I think illimae I read you had success with it? I appreciate any suggestions. Sorry you have to change treatments ninetwelve. Praying for good scans for those of you having them soon!
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mommacj, my worst days were 3-10. Early on I used Promethazine and lemon ginger tea for nausea and olanzapine to prevent vomiting, which I suffered with for about two weeks per cycle. I’ve noticed no SE’s from the olanzapine at all. Fortunately, the nausea faded away and an acid reducer and olanzapine are now only needed for one week. The fatigue was severe to me and persisted until February when I requested a dose reduction to 80%. That is now fully resolved and I can’t recall the last nap I needed. Enhertu SE’s have been tricky to figure out but hang in there and keep trying, things should improve.
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Thank you illimae, I’m glad to hear that Olanzapine should help. I’m going to try IV fluids and anti nausea IV a few days later to see if that helps too. My oncologist started at me 4.4 so I’m going to try and figure out how to make this work better. I read in a FB group that side effects start to diminish over time. I just have to figure out how to get to that point.
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I wish you an easy treatment and great luck 😁
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Hi Mommacj,
Sorry to hear your first treatment was so dreadful. Mine was pretty bad, with days 4-9 getting progressively worse,with day 9 being the worst day. I didn’t need IV fluids. Surprisingly after the worst of it was over, I actually felt very good. No fatigue and more energy than I have had in arguably a few years. I need to update my treatments, but I’ve been on Tamoxifen for 2 months, Xeloda 1 Year, Kisqali/Letrozole/Zoladex 3.5 years, Faslodex 11 months, and oral Cyclophosphamide with Methotrexate 3 months. Enhertu is my 6th line treatment. I was diagnosed in May 2017.
I just had my second infusion on Tuesday and the difference from the first is significant. I’m feeling pretty good. Very mild nausea, but so far that’s it. I started taking 2.5mg Olanzapine before bed on Day 2 and have continued. I might discontinue that tonight or tomorrow. I was also prescribed Pantoprazole (acid reducer) My oncologist feels that stomach acid may have been the culprit for day 9 being so bad last cycle. I was also prescribed Odansetron, but I haven’t needed it. My dose was also lowered slightly. The clinic had the wrong weight for me for the first infusion. They were off by 9lbs. Weird, but at least I noticed it.
I hope you can find a pre/post med protocol that a) is effective and b) allows for a good quality of life.Thanks to everyone else who is sharing their experiences. It’s been very helpful. And also great to hear about the stable scans. I have very high hopes for this drug and hearing success stories is so encouraging.
I have also started to lose quite a bit hair. It started coming out on handfuls exactly three weeks after my first infusion.
Hope everyone is able to enjoy the weekend.
Anna
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Thank you Anna I’m so happy to hear the second infusion is going better. It gives me hope. I had a similar experience to you… after day 9 I felt better and today I felt better than I have since before I was rediagnosed. I am praying this treatment really works (for all of us) because I blew through Ibrance and Faslodex so quickly. Praying your side effects stayed mild. My onc gave me a prescription of 5mg Olanzapine… I think I’d rather start with 2.5. I tend to be a lightweight on most drugs. Hope everyone was able to enjoy their weekend. :)
Blessings,
Caroline
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I will be leaving this thread, scans have shown it's not working on my liver mets. I will be getting a liver biopsy and while waiting for the results I will be given weekly Epirubicin infusions for 8 weeks.
I found Enhertu one of the hardest treatments I have had, although some of the side effects diminished with each round fatigue; mental and physical did not, despite lowering the dose.
I know it is working well for some people and wish anyone continuing with Enhertu a long and successful time on this drug.
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Denny10- I'm sorry to hear of your liver progression. I hope that the liver biopsy gives you some clues as to next treatments. Have you heard of the Travera test- supposed to help predict which treatments may work for your tumor. You need a big chunk of tissue I have heard, but, liver biopsy works well. More info is in the clinical trials thread. I hope that the epirubicin shuts that progression down. how long did Enhertu work for you? When did you take the Trodelvy and how long did that work?
wishing you luck
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nkb, I am in the UK, so no Travera testing as far as I know. I was only on Enhertu for 5 months . Trodlevy worked for me for a year. Epirubicin is a stop gap, until the results from the biopsy come in and the oncologists find the appropriate treatment for me.
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Denny10- I am not so sure Travera testing is so readily available in the US either - I guess that you are Her 2 low? I have been wondering how well Enhertu following Trodelvy is or vice versa since SusanSF said the was told that the Her 2 gets depleted by the first one you use. (in Her2 low). Next treatment does seem to be a toss of the dice unless Travera can shed some reliable light on best choices. -(down the line for most of us)
Wishing you good results!
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Sorry Denny it has stopped working. So far it's been very good for me. I"m on infusion #6. Excellent results and I'm mostly having to adjust and balance Day 4,5,6, 7 for constipation vs. Diarrhea vs. nausea for each cycle. My first PET this month after Enhertu showed interval resolution, no avid uptake in the bowel area which had been riddled with uptake 3 months before and disappearance of small volume ascites. Markers have dropped 2000 points. I realize this is all temporary until the bad guys catch up. I'm keeping my eyes open for what's in development now but enjoying myself now, just finished my trip to Maui that was cancelled when I came down with Covid. Take Care…
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nkb, I will be having a liver biopsy next Tuesday, hopefully that will give the oncologist some help with what to do in the future. Here in the UK your results are discussed by a panel of specialists, so it's not one oncologists decision.
ninaca, so pleased you were able to enjoy your holiday in Maui, long may your positive results continue on Enhertu.
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denny10- that is excellent that a panel of experts discusses your case!
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NKB I had travera testing done and I flipped almost 2 years ago from ER+ PR- HER2- to Triple Neg…and my number one things to work were Vinorlbine, Affinor (which didn't work for me when I was ER+) and a drug similar to Enhertu (they didn't have enhertu at the time to test) came up 68%) I start Enhertu tomorrow…. I didn't see SusanSF say that it only really works for 1 infusion then stops…I believe it though… They said since I have not been surpressing ER+ for the past almost 2 years that it starts to grow again (for lack of a better word)…and thats why now I am coming up that HER2 stuff might work… however…I think my cancer ALWAYS initially responds for 1 or 2 treatments and then figures out a way around things…so even if its gonna respond to Enhertu it will for 1 treatment and stop just like with everything else. Denny you have to have a GOOD IR on board and your oncologist to order the Travera Testing kit and I would recommend if they do order it to have it sent to you…directly and you bring it to the IR when you have them do the biopsy.
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What happened to being able to EDIT a comment??? I cannot find that… Anyway I should have mentioned to NKB I came up HER2 low +1….
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Nicole, top right of your post should be those 3 little dots, edit and delete are there.
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Nicolerod-i hope it works well for you. glad to see you posting.
I wanted to clarify what SusanSF said- not that it only worked for one infusion- she said if you are Her2 low (vs Her 2 positive) you could deplete your Her2 on Enhertu or Trodelvy and then when it stopped working and switched to the other one it wouldn't work as well (for example take Trodelvy until it stopped working and then switch to Enhertu second or vice versa) it wouldn't work as well- I don't know if she read this somewhere or Hope Rugo told her this.
Someone told me today that she read it worked better for Her2 zero- I have been told that the pathologists have a hard time deciphering 1+ vs 2+.
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Goldie HI!!! I don't have those dots???
NKB…. yea… as I mentioned I went from orginially ER+ HER2- to mTNBC to now still mTNBC but HER2 low +1…I don't have high hopes.. I did Trodelvy,…last year.
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nicolerod best wishes that enhertu works for you.
I am in the UK , I do not know what an IR is . As far as I know Travera is not available here.
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Denny you need to email Travera but its too late now bc you had your biopsy today. and IR is an Interventional Radiologist they do the liver procedures and biopsies
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Nicole, circled in blue, top right is where you will find delete/edit.
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