Hello my friends- I feel like I finally have time to write as I am finally comfortable and in the hospital. My wonderful 80 year old onc was trying to figure out why 50% of my heart beats were PVCs( little light squeezes) and sent me to cardio onc specialists… with holter monitors etc they determined I needed a heart ablation to fix it before I could start back on IV chemo( doxil) so chemo has been on hold since Sept 24th so of course I went off the rails! I had to wait for a cancellation to get the ablation finally this week. They made me stay awake while they threaded the thing through my groin up to my heart… and still wide awake when they started exciting different parts of my heart to find the bad part that needed zapping! I was so happy they found it, put me to sleep and zapped me… it all appeared successful but I was already full of ascites in my belly and the IV fluid from the procedure seemed to add to my woes… so it became unbearable and here I am in the hospital.. lat night they took 6 litres of fluid off me( 12lbs!) and I feel so much better. They are keeping me perhaps for infection. My wonderful elderly onc has been in touch through out.. even texting me this morning to have the ER doctor call him this morning.
My next challenge is to get back onto chemo as soon as possible. Dr come explained that my belly(?retroperiteneum)?is seeded with salt and pepper size cancer that is gumming up my lymphatic so I need to change chemo… he suggests Enhertu… told me he is working on it… with insurance etc… I think I will have to pay $8k in deductible for Dec and again another deductible for 2025 in jan… still hope to go to Nz for Feb and march ( god willing) and the price for Enhertu in Nz is $175k year… about $10k each.. ouch! That money would have been more happily spent on my daughter’s June wedding or getting me over to see my new grand baby expected in Feb in Switzerland… but it will all work out out in the end. For now I am just happy to be comfy in the hospital and not feeling like I might explode. Anyone want to chime in mostly positive experience with tolerating Enhertu… but as always feel free to keep it real! Big hugs to any of you out there who are still suffering… I wish it was always this easy to just stick a needle in your belly snd drain away all that misery until we feel better!
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Bettybuckets
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Hi Beth. I sorry to hear that you are in the hospital. You sure have been through a lot and am happy you are feeling better and being taken care of. Hopefully the drug situation will work out. You sure have a lot to look forward to. A wedding and a new grand baby. ❤️. Praying that you can get to New Zealand and that the new drug will work❤️
I have been on Enhertu for about 14months.I am having no progression so far and even a bit of improvement .Also the only side effect I have noticed is constipation but taking Senakot takes care of that.
So happy to hear you are feeling better. I hope all works out well with Enhertu and you see significant improvement!!! God bless you with peace and healing!!!
Best wishes for a great recovery from here on out. Fingers crossed Enhertu is just the right treatment for you. Hoping you will get to do everything you had planned.
Bettybuckets And I was complaining about waiting a month in September for my new treatment. That's a bit shocking you had to wait so long to get the ablation! But I am glad it's done and you feel so much better now you are drained. I bet you are ready to move on now!
I just had my 4th Enhertu last week and doing very well on it so far. The first round I was very tired the first week, and the worst constipation ever! So be prepared for both possibilities. Now I know to start Colace the morning of, and one on the evening, eat fibrous, light meals and all is good. Another thing, add a 1/2 - 1 cup of coconut water to your daily hydration, especially that first week, and snacking on protein keeps any hint of nauseau away for me.
It took me until bloodwork of this 4th time to see my TM clearly drop, before that they were still slightly elevating. Others have claimed the same experience. I don't usually do this on FB but I joined the FB Enhertu group - it is great imo to be aware of all the very varied experiences! It's a supportive group too. My hair is shedding more than usual so I got it cut shorter (it was quite long), but no sign of losing it yet!
I get scans in a couple of weeks, hoping my liver is showing positive signs because I showed some ascites for the first time in my late August scans. Until 2 days ago (out of the blue pain flare, maybe from being jumped on hard by a ball-of-muscle dog?! My Thanksgiving treat lol) I've been feeling so good that I've been working with more clients than for quite a while! I hope you have the same lack of fatigue as me, it's such a relief
Will you be getting a heart echo done before you start? Or maybe you don't need it after the ablation?
I am so happy to hear of your pos experience and can’t wait to get going and potentially feel better! I am still in the hospital day 3 after the paracentesis….and will join that FB Enhertu group you mentioned… thank you for being so supportive!
I'm also confused why you would have to pay a large deductible at this time of the year? I see my hospital is charging about 15k for each enhertu dose in NJ (oh, and I'm only getting 80% because I had requested starting at a lower dose, and then they kept me there due to my neutrophil count).
Insurance! Was reviewing the plan options for next year... my old plan has raised prices by about 25% and decided to add 20% co-insurance to ER if not ending up being admitted within 24hr, along with some other negative changes to the plan. Eek
it all seems bad for pts… we switched to this plan when my hubby turned 65 a few months ago.. so I haven’t had much toward the deductible which is $8k so thst is why Enhertu will cost that in 2024 and a month later in jan 2025 I have to pay another $8k… but still thankful that we have these meds
Hey there! My mom has been on Enhertu since August . So I think she has had maybe 5 treatments. She started out on the middle dose. And is now on the lowest dose. She has little to no side effects. Her hair has thinned but she has not lost it. She usually has about 2 days of being tired a few days after treatment . Her TM continue to fall with stable scans and some improvement on her most recent scan. Hope this encourages you❤️
Glad you are finally comfortable! What an awful feeling to feel you will explode! What more must one endure? The horrible effects of this disease never seem to cease. If you are looking forward to traveling and a wedding, that’s a good sign. You’re living with immense hope and that is all we have at this point. I hope you get released soon and can get back on treatment. It’s so important to try and stay ahead of this beast. Best wishes…
Hi Nocilla- I am hoping to get discharged by evening! I just have to be patient while waiting to get in chemo… but very hard when things growing in real time now.
Dear Beth, I’m so sorry that you had to go through all that discomfort and glad to hear that you’re moving on to your next therapy. I hope Enhertu works great for you and that you get a well deserved break from all side effects.
Wow!! I had no idea these treatments are so expensive. I don't know whether they are made available in Canada where we have Medicare. I wish you "Good Luck!" with all you are going through! 😍, Cindy
I am glad that you are having some relief on the ascites. Good luck on your new treatment. It is an eye opener on the cost of treatment. I was disappointed to hear that movie people decided to take a new direction. I was looking forward to it. Take care.
Im glad you’ve come through all of the recent horrors. The ascites must have been so so uncomfortable. Well done for pushing on through all of it - and your oncologist sounds amazing. hope you get on ok with the Enhertu. Best wishes xx
Hello, Beth: I'm so sorry to hear you've had such difficulties, but am glad to hear progress is being made. Praying God's peace will calm your soul. We all know because of our bioindividuality, people respond differently to any one med. Some may have bad reactions, some no trouble. I was on Enhertu for a year before it quit working. ( I am ER+PR-HER2Low). I hear true HER2positives get more mileage out of it, but I was expected to get only 8 months, so a year is good. It was absolutely THE EASIEST treatment I've been on!! I was never sick on it and had great energy, felt fabulous. Never fatigue or icky, no lung/heart side effects. It did gangbusters work until it decided to stop. That being said, I don't know if it was me and the Enhertu, or the other stuff I do on an integrative basis: I have a primarily Whole Food Plant based diet with wild salmon a few times a month, take a bunch of supplements, and do mistletoe injections. Also, I always did a 3day water only fast (can include herbal teas), around treatment. Did fasting around chemo such that I had lunch on Sat.,didn't eat again until Wed. morning after my Tuesday morning Enhertu treatment. That gave me about 72hrs fasting until Enhertu. Sometimes I had dinner on Sat. night, that still gave good fasting time prior to chemo. I also followed up Enhertu treatment with high-dose IV-C (50g) within 24 hrs of Enhertu. Praying you have a good run with Enhertu. Side Note: My Guardant360 test revealed a very high tumor burden. Newer research indicates while Keytruda immunotherapy is not necessarily good for all cancers, for some reason folks with high tumor burdens respond pretty well to Keytruda. So that is next in line for me. Prayers for a safe transition to your next chapter!!
the more I dip into this site the more thankful I am for the National Health Service here in the UK. I have stage 4 MBC, am 83 and have been on capecitibine (xeloda) for the past 33 months. I couldn’t deal with having sort out the finance for my medication as well. But of course when push came to shove I would😇
hi Beth! I am so sorry to hear that you were in the hospital and dealing with so much.
I don’t have much to add to what everyone has said , other than I have been on Enhertu since August and it has been quite an easy drug. In fact I’m just back from the UK seeing family, and was in France a month ago on a work trip with my husband
I kicked and screamed about going on it because I read so many stories about difficult side effects. On the other hand, on the Facebook group There are many incredibly positive stories. When it works it is very effective
I started on a low dose and it seems to be working. I don’t have side effects other than fatigue, still have my hair and most importantly My markers are dropping! I have a scan this weekend so we’ll see.
Let us know is how it goes. I hope and pray things get back to a more even keel for you soon. Xx.
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