Anyone starting brand drug, Enhertu?
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Moissy,
The nurses told me they have had trouble getting approval for HER2 low. As you described, they brought up the latest trial results and were able to get it done. I got a letter from my insurance yesterday and it said I am only approved until 7/17/22. Kind of crazy because that would only cover two cycles. I feel confident that we will be able to get that renewed but what a pain for my onc team!
Your team should be able to get you approved. I have a CIGNA PPO plan.
Hugs, Susan
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Today is the 1st that I did not throw up during the 2nd cycle, so it’s time for an update.
The 2nd cycle was massive improvement of the 1st, so much so that I need not entertain a dose reduction and may ease up on the anti nausea meds next time, with the hope that soon, I’ll no longer need them at all.
Here’s my notes of SE what/when, if anyone is interested.
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Thanks, Susan. My onc office is in the process of seeking approval. That is crazy that they only approved two cycles at a time.
Illimae - Holy cow, that's a lot of puking. Glad you are finally improving. What pre-meds and nausea meds are they giving you? I hope they can get your nausea under control! Thanks for posting your “symptom schedule."
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moissy, it is, lol but to be fair, I have some nerve damage that resulted in a paralyzed vocal cord and since then anything can trigger me physically to puke, coughs, hiccups and of course choking. The infusion includes dex, Pepcid and zolfran and they prescribed ondansetron and olanzapine (usually for depression) off label for nausea when my go to of Promethazine wasn’t cutting it.
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Currently my onc is trying to get me on Enhertu as a HER-2 low. He is on his third appeal with my insurance company. I will be eligible for Medicare in September. Maybe that will make a difference.
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ninetwelve,
I'm HER2-low. I was able to start Enhertu. However, when I tried to get my 2nd infusion, Cigna claimed that I can only get it every 4 weeks. Crazy! All you have to do is check the website. The recommended dosage is every 3 weeks. They finally let me take it after a 2-day delay but UCSF will have to apply for approval every month going forward. These companies not only waste our time but also their own time. Cigna originally told UCSF that it was being denied because they didn't want to pay for an infusion at UCSF, that I should go to a cheaper place or do it at home(!). There aren't any infusion centers in SF. Even if there were, I'd have to drive there with my port accessed since I do a blood draw, then see my MO before every infusion. Getting an infusion in a non-hospital setting can also be dangerous if you have a reaction.
CIGNA has never given me problems before. They are now trying to move away from hospital procedures. They even told me I should get my scans at a cheaper place. Probably won't be long before they force me to do it.
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I’ve had my 1st brain MRI since starting Enhertu in late May and the results are pretty good, better than my neuro rads onc expected. Two spots are stable and several others have shrunk (typically by 20-30%) including a previously treated spot that has been stable since 2018. Nothing new was seen either, so definitely continuing treatment and no gamma knife in my future, yay 😀
I have noticed hair shedding but not enough that anyone can tell and I’m getting a handle on the nausea and vomiting, which helps.0 -
susaninsf, Insurance is a scam, alright. What is their purpose in making everyone get a new approval for each dose of an ongoing treatment?
illimae, congratulations on the great results! I really hope I get a chance to try this new wonder drug.
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Hi All: I had no idea Enhertu would be so awful as far as SE's are concerned. Isn't it a relative of Herceptin? Is it the chemo part that is causing all the puking? I really hate nausea.
I am sorry you ladies have to be fighting all the time with insurance companies. As if you don't already have enough issues on you plate.
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Elderberry, I think I’m particularly susceptible to the vomiting due to previous nerve damage that paralyzed my vocal cord and the many months spent gagging and choking until I could finally eat solid food again. Since then even a hard cough or a hiccup while drinking can get me puking. But it has been a more difficult treatment, fortunately each time has gotten easier.
Here’s a description of how it works, I found it interesting.
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Illimae,
Great news! So happy for you and hope Enhertu works for a long time.
Elderberry,
I haven't had any nausea on any treatment. I think it's because I take 15mgs of Mirtazapine every day to help me sleep. It has the beneficial side effects of anti-nausea as well as improved appetite.
My first cycle of Enhertu, I was constipated for 5 days. So before my second infusion I took some Miralax, Senna and Dulcolax. Now I have diarrhea! I will try to find the right balance.
Hugs, Susan
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I hope Enhertu delivers what it promises.
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Illimae - So very happy to hear good news on your scans and that you're feeling better!
Susan - Ugh on the added stress of approvals.
NineTwelve - Hope you will be approved soon! If not, you may be able to qualify for drug through the manufacturer.
Medicare approved me as Her2Low and had my first infusion a little over a week ago. It's been pretty manageable so far. My pre-med is Kytril, which I've had for all my other chemos. I also have zofran pills on hand.
Days 1-3 No side effects
Day 4 One brief incident of nausea after eating something a little spicy. Took zofran and resolved
Day 5 Nothing
Day 6 Very mild morning nausea. Resolved by eating. One incident of mild pm nausea. Resolved w Zofran.
Day 7 Very mild morning nausea. Resolved by eating.
Day 8 Very mild morning nausea. Resolved by eating. Mild pm nausea resolved w Tums.
Day 9 Ate too much, too late; took preemptive Zofran
Day 10 Appetite fully returned to normal, so of course I ate too much and had to use Tums - LOL
So really only had three times so far that I felt I needed a Zofran, and I can probably control that better next time by adjusting my eating a bit. I did notice more burping than normal, but not excessive. These drugs impact us all so differently, and I hope each cycle gets easier for all! Sending best wishes to everyone!
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I am getting my fourth Enhertu infusion next Monday. The first cycle was rough, but it has been getting better. Susan in SF- it constipates me too the first week. The first cycle was really bad, but it has gotten better. I can still tell the change in bowel movements though. 2-3 times each cycle I have straight up vomiting, Not even time to take a zofran! Fatigue is the only thing that is not letting up.Latest scan says it’s doing something though so I’ll take it!
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kikomoon,
Congratulations on the good scans!!!
That sucks about the vomiting. Maybe you could take something mild daily to preempt that. I take MIrtazapine but some people take Compazine every day.
Today is Day 5 of Cycle 2 and I'm very fatigued. Still did my yoga and dance classes and walked the dog up the hills in my neighborhood but now I really need a nap.
Hugs, Susan
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Susan- I also take Mirtazapine, initially for appetite and now just because. I think it helps me sleep? I may take a zofran on the days I expect to vomit.
You sure did quite a bit for being fatigued.I can barely cook dinner on day 5!
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Still following along with this thread, because I become eligible in a couple of months for Medicare, and I think I will eventually go on this regimen. Moissy, thanks for the thought, but my oncologist told me the drug manufacturers can't make a drug available to uninsured patients if the right FDA approvals are not in place. I'm still a little confused, but it appears that Enhertu is approved for breast cancer patients as a second line of treatment, after they have already had a prior HER-2 targeting treatment. I could be totally wrong on this, because it's all new and the explanations were verbal and not written so I can't go back and check and my notes indicate that I never understood what they were saying, even though it seemed to make sense at the time.
Had a CT scan yesterday and tomorrow I go in for my consultation with a new oncologist, so I'm not doing nothing, but it feels terrible to not be on any treatment while my cancer is visibly growing.
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ninetwelve,
I believe the original FDA approval was for HER2+ patients who have been on at least one HER2+ treatment. The lastest DESTINY clinical trial results reported at ASCO showed that it worked for HER2-low so that is likely to be approved soon. Usually, once a drug is FDA approved, it can be given off-label. I have taken Keytruda, Enhertu and Trodelvy off-label. Don't know if Medicare is stricter.
Hugs, Susan
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I read an article yesterday in which they asked doctors their biggest issues that caused burnout- and they said fighting insurance companies for prior authorizations!!
I also heard a talk on the Breast Cancer Update podcast with Dr Neil Love on Enhertu. It is interesting. can get it on apple podcasts for free.
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Quick update on SE’s
I just had cycle 4 on Monday and had no issues until day 5 & 6, morning vomiting, (which has been typical for me) is just water this time, instead of bile, likely due to taking an acid reducer at night. Nausea was another big problem early on but I’ve been able to get great control of that with lemon ginger tea, instead of anti nausea medications.
Hopefully improvement continues.
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Hello. I am on day 6 of my first Enhertu treatment that I received Monday.
Days 1-3, I was pretty wired from the Dexamethasone steroid IV premed before the infusion and the dexamethasone pills I was also given for Tuesday and Wednesday. Thursday I started feeling just a little off and more tired and no longer wired with an occasional lump in my throat feeling (not quite nausea). It seems to subside if I eat something even if I don't feel hungry and is currently gone. Yesterday and today I have been a bit sleepy but I have been running around all week trying to get my son ready to leave for college next week. I am very thankful that I am mostly still at full steam but am worried some sort of crash is coming soon. Prior posts seemed to sound like people felt better the second week. I am hopeful but nervous.
Ps. I have been readying posts from many categories for 4 years now and so many of you have unknowingly been wonderful mentors since my de novo diagnosis Spring of 2018. Thank you. I thought it might help someone to hear about my first week on Enhertu and finally decided to share. Apologies if I totally goof up this first post.
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Illiemae,
I just started Cycle 3 and so far have had mainly diarrhea and fatigue. No nausea. Day 2 I've been constipated. Haven't figured out the rhythm of constipation vs. diarrhea yet. I think the premed Zofran causes constipation on Day 2 but I can't take anti-constipation drugs because the next day I have diarrhea.
Hugs, Susan
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Hello all. I’ve had two infusions of Enhertu, one in June and one in July. Unfortunately this medication hasn’t worked for me as I’ve had progression in liver and bone Mets. I thought that perhaps two infusions would not be enough time to see an impact but my MO refused to keep me on the medication. So, I’m moving on to Doxil. Good luck to you all on Enhertu! My most predominant SE’s on Enhertu were nausea, fatigue, lack of appetite, and constipation. I also developed bad nose bleeds during the second round, with long clots. Again, best wishes for you all on this treatment!
Take care of yourselves - Kc
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KC - I’m sorry to hear that Enhertu did not help you. That’s frustrating. Thanks for posting your experience with it. I hope Doxil is more effective. Sending you best wishes.
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My first scans since being on Enhertu came back and I had progression in my lungs and liver. Will also be moving to "Doxil lite", Epirubicin. I do believe that Enhertu worked for a short period, maybe 7 weeks because I was feeling great, oxygen saturation up to 100%, low TMs. Keep in mind that I have already been on Trodelvy (similar toxic payload) and ARX-788 (same HER2 antibody target) so that might explain my short response to Enhertu.
Best of luck to those of you on Enhertu now!
Hugs, Susan
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Susan-I'm sorry Enhertu did not last longer. Thanks for the info you posted about it. Wishing you the best on epirubicin
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Susan-I’m also sorry to hear you didn’t have more success with Enhertu. I only had two infusions of Enhertu and was pulled off due to progression in liver and bones. But I was feeling better on Enhertu, with less bone pain. It’s strange that the pain lessened but disease progressed. I started Doxil two weeks ago and it feels like all the back pain (from Mets) has returned. This disease is terrible and I hate it so much! But I find solace in the people who post here. You all arethe only ones who understand. Wishing you all a pain free weekend! ❤️
-Kc54321
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Hi Sisters,
My oncologist has switched my chemo to Enhertu. Starting Sept 2. My concern is they mix it with 5% dextrose. (170 calories) I don’t eat sugar, and I water fast for 5 days before my chemo, day of my chemo and until 24 hours after chemo and I have zero side effects. The few times I wasn’t able to water fast, I was very sick from my chemo. I am terrified if can’t water fast anymore. My Dr wants me on this drug for a full year. Getting sick for a week every 3 weeks sounds like something I might not want. Does anyone know if they can mix it with anything else. What if you are allergic to sugar? It specifically states to mix it with 5% dextrose.
I sure hope there is another option, this does seem like a great drug. But a year of no fasting with compromise my health for sure. My doctor did state he thinks because of my keto diet and fasting I have an excellent chance of staying in remission long term.
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carmstr835, I don’t know what, if anything could be substituted for the dextrose but the pharmacy/oncologist at your cancer center should be able to find out. As for being sick for a week during the cycle, it’s no fun but so far each cycle has been easier than the last and last week I was sick less days and without meds, I switched to lemon ginger tea for the nausea and vomiting. Good luck.
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I was able to get on the BDC-1001 trial at Stanford so I won't be getting on Epirubicin. Will save that for later.
Glad I had tee'd up this trial a month ago. Didn't expect that I would be on Enhertu for such a short period (3 cycles).
Best to those still able to take Enhertu!
Hugs, Susan
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