Hi guys- today I am about to have my 2nd cycle of Enhertu and praying this works to slow the ascites…. Meanwhile I am Having to take off 4 litres of fluid every 2weeks with paracentesis.
Please if anyone can chime in on if they have had to manage with ascites and what they did? Or what to expect with Enhertu… I barely thought of any good chemo questions because I’m consumed with the discomfort of ascites..
but has anyone had Enhertu work really well for the and what did that look like? How many cycles before you felt relief or knew it was working?
We are going to Nz in one month for 6 weeks… so I will have to pay $10k/ cycle for Enhertu while in Nz…worth it to go back to see my old friends and in light of worsening health my daughter fiancé and his twin 8 year olds will join us to celebrate their wedding… I just have to hope this 2nd cycle of Enhertu will make me feel better.
Written by
Bettybuckets
To view profiles and participate in discussions please or .
i can't help woth your current concerns so i apologize and I hope your trip is lovely.
For me the toxicity - especially stomach acid became cumulatively unbearable even with pepcid and naprozole (not sure spelling). I didn't get a "recovery week". The numbers for my liver got worse and my CA15 was stable. Hope that helps or gives you some questions for the doc.
I have no experience with this, but I do hope you get relief and a good response to the drug. You are brave to take on a such a long trip! Hoping all goes well. Please keep us informed!
So far Enhertu and predugs have not been too bad. Today ( New Year’s Eve) I had my chemo appt at 12:30PM and I just got home (12:30 am!)from a very fun NYE dinner party with a dozen friends…. Pretty uncomfortable with the ascites but I would be uncomfortable staying at home too… so I just went for it! So glad I did
I love your attitude! I’ve convinced myself once or twice to go somewhere even when it would have been easier to stay home - so far I haven’t regretted it! This year, I’m going to do it more. I hope your trip to NZ is fantastic.
I’m so sorry that you’re having to deal with what sounds like some quite significant ascites at that volume. So uncomfortable. Not been on enhertu so can’t help on that score. Can they work out what bits of peritoneum or liver are creating most of the fluid and zap them or cauterise with laser knife (precise) type radiation? Only a thought as have no idea and it might make it worse. Or Are there portable pumps that can discharge the fluid constantly rather than needles? I might look that up as most of my family with cancer (ie all bar one) have had ascites. Best wishes and I’m sure the enhertu will kick in so your trip to NZ will be both magical and memorable for all the right reasons.
Bikebabe- oncologist says it is like salt and paper in all my lymph nodes so I have been getting clear scans… only when they grow to 1/2 cm can we see them. They are gumming up the water works and so we just have to pray chemo will work. I am always hopeful!
I hope the Enhertu works for you and that you will find relief from the ascites. Wishing you a lovely time in New Zealand celebrating with your family. You have always been a positive, inspirational woman. Please stay strong and know that I am sending you many hugs and prayers.
Hi, I would talk to your oncologist about this. Very often they can either make adjustments to dose or frequency to help or can give you something to ease the side effects.
I’ve not had this treatment myself (my BC is HER2 neg) but ADC is my professional area. Enhertu and Kadcycla use the same antibody (Trastuzumab aka Herceptin) but with different drugs attached. Both suffer from similar side effects, including fluid retention issues as well as liver & kidney function issues. It’s because HER2 isn’t just expressed on the cancer cells.
I would definitely have a chat with your oncologist to see if there is anything they can do to make you more comfortable.
Crazy hound lady- the ADCs are amazing Rogan horses to get the payload in there. I am so pleased to be on it with its high RR (60%) this gives me hope. I didn’t know about the liver and renal issues but I did have the half belly of ascites before first treatment and both treatments so far have accelerated that to what I call my 7month water baby in the few days after getting it. But with my feet up and then later swimming I am managing and trying to cope with 2 weeks beteeen tapping.
The first time I got so uncomfortable rights after that first chemo that I had paracentesis 2 days after.
Question that only you may be able to answer…. With half like of the drug and knowing I want to get all the goodness killing cancer that it can give, should I not tap my belly so close after the chemo?
I fear that removing the fluid in the belly 2 days out may have sucked out some of the effectiveness? This time I am going to try to suffer for longer maybe 5 days after chemo… to make sure it is circulating in blood and not pouring out when they take the next 4 litre out of my belly?
I haven’t seen any studies looking at the effect of fluid removal on circulating antibody concentrations so I can’t be definitive but I do know that only a small percentage of the ADCs actually interact with the cancer (can be as low as 2%). Specifically for the Herceptin based treatments, HER2 is quite widespread in normal tissues so a lot is wasted on what are on target but off cancer interactions.
I would say that your team would rather you were comfortable and not having to put up with the discomfort of all that fluid. They will be monitoring your responses to the treatment so if there is any concern that the treatment efficacy is reduced then they will see that really quickly.
All treatments are a balancing act between treating the cancer and the patient having a quality of life. I was having that very conversation with my oncology nurse yesterday regarding fatigue with my treatment.
Sorry didn’t mean to confuse. My BC is ER/PR+ HER2- so I’m on Ibrance which has been causing fatigue to the point where I’m struggling to get through the day without taking naps (not always possible). We were discussing dropping my dose to help with that.
I was on ibrance for 18 month before switch to verzenio gave me more time on the CDK4-6 inhibitors… was very tired in afternoon and liked a lie down but never a sleep. I don’t know how people hold down jobs… I had dropped to I took social security disability at 62.
That is interesting, I have been trying to push through but it’s all caught-up with me recently. I’ve been given an extra rest week before I start the next cycle to hopefully let me recover but we have also discussed dropping the dose after my next 2 cycles if I don’t feel better.
I had a cry with my nurse, who is really lovely, and she said that I need to be kinder to myself and take the breaks/naps I need rather that trying to soldier on.
sending you Happy New Year wishes and prayers for a wonderful trip! I think it’s wonderful that you’re going on your trip! I’ve been on Enhertu for about 9 months. My primary side effects were diarrhea and hair loss. I had the 2 best PET scans in 4 years. Cancer was shrinking and no new growths. I have bone and liver Mets. Then 3 months ago I developed a horrible side effect. My muscles and bones are stiff and I ache all over. Tylenol helps a lot. This has really diminished my quality of life but Enhertu was working so well. We’ll see after next scan later this month. Have a wonderful trip, it sounds like you’re taking care of your fluid retention issues
But I am sorry for rh stiffness. Ask you Gp or inc if you can try Celebrex and you can take Tylenol with it. It’s just once a day a better NSAID that doesn’t hurt your tummy as much as the older drugs
Dear Shafight----Just a word of caution that has been told to me by medicals: Tylenol may damage the liver. It has been removed from my go to pain reliever and replaced by Ibuprofen. Please ask your doctor or nurse about it in case I have heard that wrongly.
i rarely post, but wanted to share my experience with Enhertu. I have been on it almost two years now with very good response. My Mets are in my liver and bones and all my scans these last two years have shown shrinking tumors or resolved areas. I did drop to an 80% dosage after my fourth treatment to help with nausea side effects. Recently I also dropped the steroids given with treatment as they were causing me to retain fluids. I receive my treatment by IV every three weeks and do not have a port (although I am considering that as I did not think I would be on this treatment so long).
I hope to give you some encouragement in regards to the Enhertu. There is an amazing Facebook group you can request to join as well if you would choose.
I wish you all the best and hope you find some relief in the coming weeks!
I have been on Enhertu for a year and a half .I get my infusion every three weeks.I did have constipation but Senakot helped.I have had no progression in my bone or liver mets on this treatment. I do seem to be retaining water as my weight keeps increasing 😫 Perhaps it could be my lack of activity,as I do nap a lot.Other than that I have been quite pleased with Enhertu.
Very interested in the fluid as I have ascites and another woman who commented here said the had to drop the steroids given with Enhertu as it caused her to retain fluid. I will talk to my dr about that! Very hopeful message thank you!
I don’t have a port either and I’m hoping I never need one. I’m almost 10 years and they can only use my left arm, but I’m still trying to find a decent vein each time. It’s getting harder, but some doctors and nurses say they can use my right arm even though my lymph nodes were removed. I don’t like things attached to my body, I know that would not sit well with me. I hope you find a good decision for you!
Hi that is just like with me! But I am only 4.5 years in. But no port yet and they can only use the left side and it hurts when they poke me. But I have also heard you can go to the other side when no more access. But I may get a port as I had one long time sgo
I also didn’t have a pet until 4 weeks ago ago. I was always changing meds so it seemed to be a waste of it was getting more and more difficult for them to find a vein for my infusions. So at several peoples recommendations I got a port for the last 2 infusions. It’s heavenly! Makes things so easy!
Bettybuckets, right now constipation sounds good. I do have a prescription for diarrhea which helps during rough times. I also stopped the steroids and feel much better.
You are the epitome of brave, Beth. I hope you and your family have an incredibly rich and memorable time in NZ.After 10 cycles of Xeloda, followed by 10 cycles of Doxil, I started Enhurtu q 3 wks. My experience thus far includes N/V a few times, but totally debilitating exhaustion hit me Christmas week. Cancer in my liver has not grown but bone, adenopathy throughout my chest and gut, and markers have zoomed up.
Due to pulmonary edema identified by CT in November I was prescribed Lasix , which has reduced mild ascites in my belly and swollen feet. I wonder if a small dose would help just a bit? My case is very minor compared with yours.
You inspire me. Keep visualizing yourself in gorgeous NZ with your daughter and her new family.
Oh wow we are so similar! I had 18 months of clods and then started doxil in may 24…. Had so many disruptions for covid… then 3 months off for heart work up… so cancer came back fast.. and so I started the Enhertu just Dec and praying it works with no issues.
My 2nd Enhurtu tx is Jan 10. I'll be following how today's goes for you. Too early to give up and I have no idea what is next. We have had similar paths but I've had fewer complications
I am glad to hear you can restart after the pneumonitis was it just rest or did they treat it somehow. I’m sailing thru this 2nd one… had it yesterday went to the New Year’s Eve party then out to lunch with friends.. but I think have been warned its day three when all the pre drugs where off thst gets you! I have GP appt when hair cut etc… might just wish I was home chilling!
They give me olinzapinr/ zyprexa an old anti psychotic drug one at night for 5 days… man that helps me sleep!
Enjoyed reading the genesis of your 'handle' in a recent post.I was diagnosed with pulmonary edema , not pneumonitis, in Nov by CT. Only treatment is Lasix bid but actually I only take it once because it results in peeing 5+ during the night.
I'm told the pulmonary edema is unrelated to CA tx.
I noted the first 3 days after enhurtu were fine, then I was flat on the couch for 5 days. I hope your coming 5 days are minimally bothersome. 🤞
Debilitating fatigue. Unable to move for 4-5 days after the 3 day honeymoon period. Luckily Luke, my son was here most of the time to prep food and walk the 🐕. Not a great holiday. Fortunately, I have very little of the N/V I hear so much about and more reflux than N/V.
The ascites you experience scares me. I too may ask the onc to withdraw the steroid dexamethazone if it looks like I'm headed in that direction. Did you ask your onc about Lasix?
Lasix won’t help as it is in belly cavity.. don’t worry it is not common with MBC… mostly pts with ovarian get it… but lucky me. I had 5.1 litres taken on me today.. I lostv10 lbs from the fluid! Then I did vomit my lunches not having a good day. But gives me time to over on a children’s books about the adventures of these two identical twins thst my daughter is helping to raise with her partner.
Just wanted to wish you the best of luck! My very good friend has been on Enhertu for about a year and we all refer to it as a miracle drug. She was very sick about a year and a half ago. After about 3 years into her HR+/HER2- mbc dx (and after 3 lines of therapy), the cancer spread to her liver suddenly, which started to fail. After hospitalization and chemo, the liver started to recover, but after she switched to Enhertu she really started to thrive. It seems to be more effective and better tolerated than traditional chemo. The ascites had already subsided when she started Enhertu. But it hasn't been a problem since. I hope in time you get terrific results!
Dear Betty Buckets -----At some point, you must tell us all the significance of your name. Meanwhile, of course you are going on the trip, one way or another and we all which you well, loudly and sincerely! XXX OOO
Oh yes Bettybuckets comes from a handsome young football coach who shortly after misremembering my real maiden name (Beth Buckley) got struck by lightening and died on the football field in my home town. And since then I have evolved into BettyBucketList on social media which suits me very well!
I went on Enhertu in August after a really scary scan. My cancer had spread all over my liver and bones, as well as lymph nodes throughout my torso. In, my first scan since starting Enhertu (4 cycles?) I have only one spot in my liver remaining, and a few in my bones. everything else is cleared up. And am only on a partial dose.
More importantly, I have a full head of hair and living a totally normal life. As they say on TV, your results may vary..:but so far it has worked very well so I hope it does for you too!
Definitely join the Facebook Enhertu group as there are a lot of tips on how to handle side effects. And if I recall several women with acites that you could connect with (there’s a search function so you can find their posts). There are also a lot of very positive stories.
I’m so glad you’re going to New Zealand as I know it’s your happy place. Since starting Enhertu I’ve traveled to France and Britain and it was all fine.
Tim Tam I am so happy to hear from you… I was having some hard days since chemo pre meds wore off… vomitting and also go very full with ascites so had to be tapped ( paracentesis) just 1 week after the last one and that left me weak! But today I am better and really hopeful. My neck lymph node is so much smaller and finally my tummy is flat not taking on fluids. Long may this continue. If this is all due to Enhertu then I am very impressed!
Bettybuckets I have no information on Enhertu but read below that at the time of me writing you have had the 2nd dose. I also watched your Christmas YouTube video of your beautiful granddaughters to be. I saw your daughter and remember her so well from the billboard you did...I read from you somewhere that the network has decided not to pursue making a movie from the story(big loss on their part in my mind as it would have made a great movie) but nevertheless your daughter has found herself a wonderful man and will be adopting those two sweet girls so it all ended well and I'm sure eases your mind to see her married and well taken cared of.
I know how important NZ is to you and going with them and your supportive hubby will be good for your soul. Just make sure that your Enhertu can be given there and that you can make arrangements for your paracentesis. Being away for 6 weeks you might need it. I know you have dual healthcare coverage for the US and NZ and a wonderful oncologist in NZ to take care of you. Can you give her a heads up before you travel of any changes since your last trip there?
I will be rooting so strongly for you to be able to make this trip and be able to enjoy it. Take care and please keep us updated.
Awesome forever, thank you for writing and for following my life so closely by remembering my beautiful daughter … that is such a huge compliment!
As you saw from the little Xmas movie the girls will be joining us with Molly and chase in Nz for 2 weeks. In light of my newer health issues we just needed to encourage this trip sooner rather than putting it off by a year and have just put the finishing touches on a big party in a vineyard to celebrate with all of our NZ friends. This makes me so happy.
Enhertu on the 2nd cycle has been the roughest of my 5 lines so far . I discovered my very supportive husband is not good with sound of retching… who is? But everyone has their limits. Thank you for your very good advice about setting things in motion re Enhertu ( $175K/ year for pts in NZ) and the paracentesis. It seems to be working for me so luckily only there for 2 cycles not a whole year to pay for. And let me find a pic of the dresses I have given the girls for the party… I think you will love them. They are sweet.
Hi Beth....I think that's your name but if it's not please correct me and I will go back to Bettybuckets. So sorry that this second round of Enhertu has been so rough too. I think in general most men will not do well with the sound of continuous retching but truly it's a hard sound. Don't fault your husband on that, even though you really needed his support I know because it's hard for you as the patient.
Oh those dresses are so beautiful on your daughter and almost granddaughter. I hope despite everything you can celebrate the coming together of your family and your NZ friends like the special moment in your life it will be. You deserve it and I'm sure everyone here will be rooting for this trip to be a success just as strongly as I am. Best wishes to you.
Content on HealthUnlocked does not replace the relationship between you and doctors or other healthcare professionals nor the advice you receive from them.
Never delay seeking advice or dialling emergency services because of something that you have read on HealthUnlocked.
First scan after Enhertu
Enhertu
Enhertu 
enhertu
