Anyone starting brand drug, Enhertu?
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Hello,
Is anyone on Enhertu together with an endocrine (anastrozole, letrozole, fultvestrant, exemestance, etc)?
Thanks,
Nguyen
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I will be starting Enhertu on June 1st. I know very little about it because Her2+ is a super recent mutation for me (after 15 years Her2-!). Glad to find this thread, especially since there was almost nobody on the boards on my most recently failed regimen (Gem + Carbo) and it has been a bit lonely!
I have recent progression to my liver with innumerable lesions and a suddenly-high Ki67 score, so stuff is getting scarier.
Any words of advice, I'm all ears.
- Lulubee
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Dear Lulubee, wow, you switched from her2- to her2+... that is pretty rare, and that is what causes the aggressive disease. TDXd is the most advanced/effective her2+ drug ever, so I hope it works very well for you. It'd be interesting to know, once you start it, what SEs you experience, what is your general opinion and what your results are? If you don't mind, I'd ask you to tell us here every time as you have some news - that would be important, as there are not so many people in these threads who take TDXd.
Hugs, Saulius
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my wife was on Enhertu + Keytruda trial for Her2 -low for 14 months with no side effects. She has bone ,lung and liver mets.
She just progressed in liver.
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Lulubee,
I just started Enhertu on May 19 due to brain Mets progression. I got super nauseous and vomited Saturday night. All weekend I have had extreme fatigue. Yesterday and today I woke up with very sore legs. Ibuprofen is helping with that. I hope it all levels out soon
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I will be starting this line of treatment next week. I am HR+/HER2-low and this will be my 7th line of treatment in 5 years. I was Mets only to liver for 4 years and had progression to bones about 8 months ago. I’m looking for any and all information regarding onset of SE’s, severity of SE’s and what has helped mitigate SE’s for anyone who has my subtype. I’m really anxious as I believe most with HR+\HER2 low have only been able to receive this line of treatment through a clinical trial? I’m curious if that’s the case.
Kikomoon-thank you for posting. How are you feeling? I hope much better.
-Kc
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Hi all, I had my first infusion on May 26th. I found days 4-9 pretty hard with lots of nausea and vomiting, however, I was in a sad state to begin with having been in the ER with pain, which also makes me puke. That is under control now with meds and hopefully it’ll be better next time when I’m more fit for it.
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the Ibuprofen worked for day 3 only on my sore legs and that’s it. I went to the dr. And got a tramadol prescription which I took 1 on days 7-9 but then the pain went away. also had double vision days 3 - 6 - Not sure if that was side effects or brain Mets but it is gone now. I had not eaten much fiber and got the most constipated I have been in my life and did a suppository on day 10. I don’t ever want to be that constipated again so immediately put myself on a high fiber diet. I’m on week three and feeling much better. I’d say my worst days were 3-10 because of double vision, achy legs, and finally, day 10’s relief of constipation. Not sure how much was side effects or brain Mets symptoms or what. We will see this Friday at my second infusion. I had a some nausea in the beginning, vomited twice, and took zofran before cooking or whenever I thought I might need it the first week and a half
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kikomoon, sounds like we had different issues but a very similar timeframe. I’m happy we’re both feeling better and have the same type of plans to prevent the worst of it. I wish you excellent luck on the next brain MRI 😁
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Hi all, exciting news out of ASCO we thought you might be interested in:
A New Standard of Care? Enhertu Improves Survival in People With Metastatic HER2-Low Breast Cancer
June 6, 2022
Compared with doctors' choice of chemotherapy, Enhertu (chemical name: fam-trastuzumab-deruxtecan-nxki) improved both progression-free survival and overall survival in people diagnosed with previously treated metastatic HER2-low breast cancer. Read more...0 -
Der Moderators, thank you - these are really exciting news. Enhertu is a game changer in many cancers. Saulius
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Thank you to all for sharing your experiences with Enhertu. It really helps me, and others, with planning ahead and trying to mitigate SE’s. I’m definitely planning on being home/taking it easy day 3-9 post infusion. Thanks again and I wish you all a joyful day! ❤️
-KC
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Hi Kc my wife was on Enhertu and keytruda clinical trail for Her2 -low. She was tried during the day 3-6 for the first 2 cycles. Starting 3 or 4th cycle she had no side effects.
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Werone- thank for posting about your wife’s experience with Enhertu. I’ve failed my last two lines of treatment so I really hope I get some longevity out of this one!
Take care-Kc
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My oncologist is really high on enhertu, especially after the information release at ASCO last week. She thinks it will be a game changer.
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And so it goes -- my oncologist is verifying today that I will have this drug covered, but looks like I'm going to enhertu.
Here's hoping for everyone that they will do well on the drug, especially with all of the good press that it's gotten.
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Bevjen - are you HER2 low? Or did you have a receptor flip?
Very curious to hear how you get on if you are the former as I have that as well.
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I just started on this drug mid may, 2 treatments so far, 1st one was bad, this one not so bad, learning how to deal with SE. I just hope it works, I am taking it because I am her 2 2+ but Fish neg. on last tissue biopsy. this is my 5th line in 3 years. ER+ PR+ her2 low.
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Has anyone who is Her2 low been successful getting insurance approval or Medicare approval yet for Enhertu?
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I believe that the FDA approval covers HER2 low. I think that's +1 or +2.
So I had two docs recommend this. The one doc, at Memorial Sloan Kettering, said that one possibility is through compassionate use. My understanding of this is that insurance won't cover the cost with that. My regular oncologist at Hopkins today talked about off label and insisted that she had a patient on the drug already under this. I believe that then insurance will cover, but I'm not positive.
I show HER2 - 0 in my records. However, I have two Erbb2 mutations and that's how my doc is getting it, I believe. I have not flipped. The mutations were found on genomic testing. This makes sense to me because I am getting neratinib now based upon those mutations, and I get it for free from the company. This was all arranged through my doc's office at Hopkins.
One more thing: enhertu is an infusion drug. So long as it's approved (and it should be for low HER2 under the most recent approval, if I'm reading it correctly) it will be covered under Medicare Part B (not Part D) because it's an infusion given in a hospital or a doc's office. I was able to get keytruda that way.
Lesson here: talk this through with your doc. I'm not sure that all of my understandings are correct. I just kept harping on the fact that I needed to have the drug covered or I couldn't use it.
I'll post any other info that I get.
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Imagine,
Can you elaborate on your side effects? Clearly there is some interest here. Good to see you. I haven't seen you on the boards for some time.
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I can describe side effects - fatigue sickness hair loss constipation
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Oh, boy. Gotta love that constipation. What do you mean by "sickness" or is that "fatigue sickness"?
I am trying cooling caps to minimize hair loss. We'll see how it goes. My hospital uses Paxman, and although it's very expensive, there is a cap on the total costs. Supposedly I will start this week.
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bevjen,
I tracked SE’s early on after the first infusion (notes below, just FYI) day 5-9 we’re like day 4, bad but I rebounded after and learned some lessons. I’ll use the anti nausea meds better and quicker this time and I’ve got some Boost on hand, if eating becomes a big problem.
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Illimae— I appreciate your list. You takes notes like I would. Appreciate the shared/learned knowledge
Thank you
Hate that we have to live like this C sucks
While I am not on this newer med at this time, I believe it’s on a list of future treatments.
I hope you find what works for you to control as many SEs as possible
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thank you to:
Werone
KC54321
BevJean
Imagine
Lulubee
Kikomoon
For sharing your experiences with a newer treatment option.
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Hello,
Anyone experience skin color (hands in particular) change to a much darker shade during Enhertu?
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bev, sickness as in feeling queasy to the extent of not feeling like eating much or at all. Or feeling sick while being hungry. A lot of food just tastes bad and you do not fancy it. Drinking is a big struggle. I was cold capping as well but it is so miserable experience I managed just about half an hour before and half an hour after the infusion. Lost a lot of hair although still did not need the wig although who knows what would have happened if I continued on the drug(done 4 months on it , missed one infusion due to the new year trip we have done so I wanted to feel ok for it and delayed by a week one or two infusions so altogether I have done 6 or 7 of them). Then as the scan shown me stable ( and I hoped for decrease of lesions) and I struggled on that drug I have taken some time off treatment altogether. Do not get me wrong, I would have taken living like that over not living at all but as my QoL is affected far more by treatment than by cancer I have thought to myself that treatment is bound to harm me of it makes me feel so bad and cancer does not seem to at the moment so it was no brainer to stop Enhertu. I was disappointed in it - I hoped it will be a silver bullet that will eliminate the little remnants of cancer I had but it has done nothing for me. 4 months with no treatment I had similar results to what I had after 4 months of Enhertu with bloated stomach, thinned hair and lost will to live. Me stopping it made possible cycling trips and gaining weight to my pre diagnosis level (weight because of muscle mass - try cycling 10 hours of hilly terrain a day !). How did your first infusion go ?
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So happy to find this thread as I just started Enhertu yesterday after progressing on the ARX-788 trial. ARX-788 is an ADC targeting HER2 3+ or 2+ with an MMAF payload. Although I wasn't able to stay on the trial for long, I had a quick and miraculous response that gave me time to build my strength up. No SEs.
I was on Trodelvy for 12 months. No SEs. No tumor shrinkage but much-appreciated stability.
I read through this thread from the beginning and remember that someone else was taking Enhertu after Trodelvy. Would love to hear how that's going.
So far, no nausea. Some fatigue but I'm always fatigued so don't really consider it an SE of treatment.
I'm very hopeful reading some of the positive responses to Enhertu!
Hugs, Susan
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Susan - Do you know if your onc had any difficulty with insurance coverage since FDA has not yet approved Enhertu for Her2 low? I'm going to be starting itsoon and my onc said he thought they could get it through insurance now based on the article about Enhertu Destiny 4 trial that was published in New England Journal of Medicine following the ASCO meeting. But TBD.Wondered what your experience was with insurance coverage?
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