Anyone starting brand drug, Enhertu?
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Thanks, Daywalker;
I was on Kadcyla for, I think, 2 years. Good drug. Yes, researchers continue to create ADC’s like Kadcyla, that pair a payload chemo with Herceptin (ADC’s).
Enhertu is great for those of us who eventually find that Kadcyla stops working. But we are seeing that, since it is still so new, a lot of patients struggle with its side effects due to Docs not yet knowing what pre meds are going to be necessary.
If you find that you need to consider Enhertu for your next line of treatment, the Facebook site for Enhertu is a huge help as we collectively report our side effects & what seems to help mitigate them.My best to you,
Miriam
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I don't usually post much but I have been on MANY treatments for the past 10 years. I just stopped Enhurtu in June after I think 6 TXs. I was either in the ER and/or admitted to the hospital in 5 out of the 6 txs. Not fun BUT, it does work-- it dropped my tumor marker incredibly low. I had to take a break from everything given how bad the response is and am now on just Herceptin and exemestane. But my tumor marker continues to drop so, if you can tolerate it, is seems to work. Q
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Hi,
Just curious, how are you all doing on Enhertu ?
Approval is expected in Europe soon; and this product has been available on the US market for almost a year, so I'm interested to hear about your experience.
Thanks,
Stay safe,
Meja
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Hi Meja, I have been on Enhertu since October for HER2-low. The side effects are pretty harsh but I was in a major crisis situation when I started and Enhertu has worked. The first few cycles my tumor markers and liver enzymes skyrocketed higher than ever but have been consistently dripping ever since. I just had a PET scan recently and the liver tumors have shrunk considerably and are nearly metabolically inactive.
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Hi JFL,
Glad to hear that you are having an effective response to Enhertu, with shrinking of mets. But concerned to learn that you are experiencing harsh side effects; I hope treatment will be easier as you move forward.0 -
I started Enhertu in September and the nausea was so brutal that I lost 23 pounds in 5 weeks, weight that I couldn't really afford to lose. After the first infusion my hemoglobin dropped into normal range for the first time since last February, which I took as a good sign it was working so I was trying to tough it out (I have polycythemia from bone marrow involvement). After two infusions I ended up moving to another state when my husband got a job offer that was too good to pass up. Had to miss 2.5 months of treatment while waiting for my new insurance to kick in (long story there). A scan before restarting showed moderate progression, could have been due to missing treatment but we never have been able to stop my cancer from growing, only slow it down. Just started up again (2nd infusion last Friday) and keeping my fingers crossed, but my hemoglobin is still dangerously high so we're hoping it's because my body is adjusting to altitude and not because I became resistant during that break. The good news is that my new care team has my nausea under control with a complicated regimen of 4 anti-nausea drugs. Still too early to tell if this one is going to work for me.
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Hi. This thread seems like it has been quiet for quite a while... but thought I would post and see if anyone is looking
. I also posted in the Trodelvy thread.Does anyone have experience with both Trodelvy and Enhertu? I was on Trodelvy June 2020-Jan 2021. I was on a 50% dose the entire time, and I had a really spectacular response, but unfortunately had progression in January. I tried Abraxane, but just learned that didn't work. I am considering Enhertu next. Curious if anyone has any experience with both drugs?
I am heavily pre-treated and the Phase I trial world seems quiet right now....
Thanks for any thoughts
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thrivingmama - I was on the DESTINY04 trial of Enhertu for HER2 low breast cancer from 4/30/20 to 3/1/21. During that time I was mostly stable, but then my liver mets and some lymph nodes increased in size. I just started Trodelvy off-trial since I am ER+/PR+ HER2 low and am too heavily pretreated to qualify for the TROPICS2 Trial. I was fortunate that my insurance approved it. I have had 2 infusions, so I don't know whether or not it is working. There is a very active facebook page on Enhertu with lots of information on coping with side effects. Nausea was my main side effect with Enhertu. I'm finding Trodelvy to be a little tougher in terms of side effects than Enhertu, with the excelption of nausea which is better on Trodelvy.
Best! Theresa
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Theresa - that's for responding to my post. Glad to you hear you got a good run on Enhertu with HER2 low. I have had both ER+ and TNBC biopsies, but my more recent was ER+. I had a really incredible response to Trodelvy (at a 50% dose), so I'm hoping that it does great things for you too.
Thanks for the heads-up about side effects and about the Enhertu Facebook group. I had joined it a while back when I thought I was going on the DESTINY04 trial, but then didn't, so I haven't looked at that Facebook page in a while.
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Thrivingmama - Thanks for sharing your encouraging results with Trodelvy. My oncologist started me on the full dose, so it's nice to know that a lower dose can be effective. I had problems with neutrophils on Abraxane and had to follow each weekly infusion with 3 days of neulasta shots. So, I may not be able to tolerate full dose Trodelvy.
I hope that Enhertu or whichever other treatment you decide on will be effective! Enhertu was gentler on my blood counts than other treatments. Again, nausea was the main side effect which I learned to manage with meds. I wish we had solid data on whether Enhertu will work after Trodelvy or vice-versa... Best wishes in your treatment decision!
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My experience with ENHERTU has been extraordinary. All my blood work since beginning the treatment in September 2020 has been at NORMAL non-cancer levels. My CA-3 cancer marker test is at 9 as of last Thursday 4/22/2021. The February PET CT scan showed that I have had a complete response to this treatment. There is no cancer, where the PET CT scan in Sept 2020 showed it. My heart and lungs show no negative side effects and the fractures in my bones and spine have all completely healed with no signs of fracture or cancer. I will remain on the treatment for now to keep the cancer from coming back and have another PET scan in SEPT 2021.
I am still the only patient at St Joseph Cancer Prevention and Treatment Center in Orange CA on this drug. This may change as word gets around about my success.
So sorry for the delay in replying I have not been on the website for a while.
AngelsGal
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amazing , AngelsGal
Congratulations seem like an understatement in this situation.
LoriCa , how are you ?
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AngelsGal - Congratulations on your amazing response to Enhertu! I know =others who have had amazing responses to Enhertu and their responses have been long lasting! It really has been a game changer for many patients! Thanks for sharing your awesome news! Theresa
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I've been over on the Facebook Enhertu site most of my time while on this great drug, Enhertu.
So, I haven't posted here in a while. But I've been doing really well on Enhertu! CT scans look like everything in stable.
Let me know if anyone has questions; in the meantime, check out the Facebook page if you want. There's a great group on there, sharing experiences & "fixes" for this drug;s SE's.
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AngelsGal - congratulations!
LoriCA, really, how are you?
Saulius
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Hello my ENHERTU friends,
I am still doing well on this drug regime. I am wondering if since it is a targeted therapy and there is no cancer at present to target if it leaves my system quicker that if it is attacking cancer cells that are present. I seem to have 4 varying rough days with varying symptoms and then the remainder of the additional 2 weeks its just the fatigue and lack of appetite as well as hair loss.
I dont mind the hair loss anymore because I found an awesome wig salon and have purchased 2 wigs from them. I will change my picture and show you. Most people think its just a haircut and have no idea its a wig. I love that. I never have a bad hair day and even purchased a fancy wil for my son's up coming wedding on August 7th.
keep pressing on my friends,
God bless you and your families.
Angelsgal57
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My experience with ENHERTU has been extraordinary. All my blood work since beginning the treatment in September 2020 has been at NORMAL non-cancer levels. My CA-3 cancer marker test is at 9 as of last Thursday 4/22/2021. The February PET CT scan showed that I have had a complete response to this treatment. There is no cancer, where the PET CT scan in Sept 2020 showed it. My heart and lungs show no negative side effects and the fractures in my bones and spine have all completely healed with no signs of fracture or cancer. I will remain on the treatment for now to keep the cancer from coming back and have another PET scan in SEPT 2021.
I am still the only patient at St Joseph Cancer Prevention and Treatment Center in Orange CA on this drug. This may change as word gets around about my success
This was my original post from April giving an update on first round of treatment on ENHERTU. This ENHERTU chain wasnt up then and I am glad to see everyone posting here. I was the only one for a while as this treatment was relatively new then.
Still have low cancer marker numbers and all of my blood work WBC and RBC at normal levels. the only thing that is low is my platelets.
Keep posting everyone. This treatment is a game changer!
AngelsGal
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great to know that you're doing so well on this drug! As a fellow HER2 plus-er, this one could also be in my future. Nice to see you're having fun with wigs, also, I love my wigs ❤️ Wish you continued success.
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Dear AngelsGal57, this is so inspiring. I wonder how long have you been on Herceptin/Perjeta, why did you not take T-DM1 and started T-DXd right away? Your signature has a lot of details but could you elaborate a bit on the time-line of your treatments and responses? Thank you so much - this will be very interesting and important to us.
Saulius
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I find the Personal Bio portion of this site frustrating as it isnt very accurately keeping track of my treatment plan. The beginning portion is accurate where I was diagnosed in March of 2017.
Started treatment in May of 2017 with standard chemo, Perjeta, and Herceptin which I did for a year ending in May of 2018. Surgery was in Oct of 2017 with clean margins and no lymph involvment and Radiation was in Nov-Dec of 2017.
Started various Hormone treatment after Herceptin was completed and had difficulties with most of them 7/4/2018 Arimidex (anastrozole), Aromasin (exemestane), Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone) to name a few.
Started Kadcyla in September of 2019 for 6 rounds and continued with 6 more rounds until September of 2020 when we found out through a annual PET scan, it had stopped working and cellular cancer activity showed up in lung nodules, spine fractures, femurs showed fractures and Dr recommended we try 6 rounds of Enhertu and radiation for bones.
(My Oncologist schedules 2 PET scans every year one in February and one in October to check the progress of each round of 6 treatments and I hear from some that not many do that.)
My PET scan in February 2021 Showed a complete response and there was no cancer present. My bones had completely healed and showed no signs of fracture, which my Radiologist was amazed by.
My doctor is so overwhelmingly impressed that he is giving me 6 weeks off treatment so that I can enjoy my son's upcoming wedding without any treatment issues and will resume on August 19th.
I hope that this answers your questions. I am very blessed and thankful.
Angelsgal57
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Dear Angelsgal57, uhh, thanks a lot, what an ordeal you had to go through - you are a real fighter. I see you took Enhertu as one of standard 3rd line treatments after its approval. It is great your doctor is so proactive. Getting NED on 3rd line treatment was almost unheard of some years ago but now it is a reality, and this gives us so much hope. Please enjoy your time, your son's wedding and let's hope this disease is gone forever! Saulius
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I've been on Enhertu for 15 months now. It's the first drug that has kept me stable. My care team in my new state has done a great job helping me manage the side effects. I know several people who had to quit after a couple months or reduce the dosage because of the side effects, but I think if you stick it out it gets easier. The worst are the nausea and fatigue. We have the nausea mostly managed, or I've just become used to it. I just started Ritalin last week to see if it helps with the fatigue. I'm still physically active and leading a fairly good life, even if it isn't what it used to be.
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Lori- so happy to see your post. I am thrilled that this drug is working for you! I have heard lots of wonderful news about this drug for many types of cancer. Yay!!
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Nkb how are you friend? Sorry I've been away for so long and haven't updated. Moving to a new state and having several acres of property to care for (while on chemo haha!) means I'm usually focused on what I need to accomplish each day. Haven't spent much time at all on social media.
If you can tolerate the side effects Enhertu is a great drug. So good that I hear they will probably make it SOC 2nd line ahead of Kadcyla (in the US). I know a few MBC friends who say it is the hardest chemo they've ever done as far as QoL, but if you can push through those first few months it really does become easier to tolerate. And if it's the 2nd line rather than 4th, 5th, etc., people will likely be in a better position to tolerate it.
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LoriCa, very happy to have read your message specially after you being away for so long following quite gloomy situation.
I just started enhertu as well - your friends who say it is the worst chemo they had must not have had taxotere adriamycin!
Some women from fb enhertu group have hardly any side effects of at all. Granted not majority- for me personally abraxane with HP was far worse.
I am in the UK and my oncologist said that it will be second line here as well ; I was moved to it because although I still continued to respond to kadcyla the response became far less and I was having neuropathy so we decided to hit it with what could be a better drug. Dreaming of getting good to NEAD and stopping all treatment altogether!
You are so disciplined, sown to earth and driven !
Again , I am so happy you managing well - long it may continue and become even better 😊
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Anotherone I'm sorry about the Kadcyla but I hope you have a good long run on Enhertu with minimal side effects! The drug has been so successful that they are even trying it on people who are HER2 low now.
Our reactions to these drugs can be so unpredictable. The first time I did Taxol (the other version of Abraxane) I was miserable. The second time I did it, it was like not even being on chemo at all.
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I just had my second Enhertu treatment this week. So far I’m feeling fine, especially the first couple days with the steroids. My shortness of breath in my lungs already seems better. But I have two different MBCs one is HER2+, the right side us HR+. My ONC took me off Verzenio when she started me on Enhertu and I’m concerned about that. Does anyone have any of the info on whether Enhertu works on cancer other than HER2?
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Elenas - if you look at what Bestbird posted just in the last few hours updating her MBC treatment document, the output from SABCs may answer your question. I was just reading through the link she includes in her post. Im keeping an eye on Enhertu for HER2 low as that is what I am and the results from the trials sounds like it is pushing new questions into overall HER2 expression across all cancer types, including TNBC even. There was a line about HR expression being somewhat important, so it could very well be a useful drug for you.
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SondraF:Thanks! I’ll look that up
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Dear Elenas, Deruxtecan, i.e. payload of Enhertu is proved to have a powerful bystander effect that enables the payload to kill nearby cells that are of whatever origin. Also, even HR tumors can have some HER2 expression (her2 low) and can be affected by Enhertu, so let's stay hopeful. Your decreasing shortness of breath sounds a good proof that Enhertu is working well. Actually, from one Japanese study (n=22), seems that Enhertu works very well on lungs.
Saulius
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