Anyone starting brand drug, Enhertu?
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The last day or two of explosive D and general feeling gross seem to have passed and I just powered through a baked potato with two huge heaps of full fat cottage cheese and didn't feel like stopping at all, so I am hoping things are on the up. UTI appears to be clearing - I never got the burning urination need, just a low fever and a sense of things not being 'right', also not quite making it to the bathroom in the middle of the night in time once or twice. That seems to have passed too.
Just dropping by to suggest bone broth as an idea for queasy times. I was on the couch last night thinking of what else we had in the house that sounded appealing when I remembered I had some cartons of bone broth in the cupboard. What a win! I wanted something hot/warm but brothy, you cant get much better than that. Added bonus it should help my a) low sodium levels and b) gut rebuilding and protection. A mug was very comforting and I felt better after.
Finally, it seems all my pain has been due to the lymphadema. Glad we found that out and I can hopefully get off the opiates merry go round.
Day 13 here, lets hope Im on to the sunny highlands of week 3. Fatigue levels fine, just wish I could sleep better, sleep is currently a mess. My fingernails are exceptional though- growing fast and strong. No idea what that is about but Ill take it.
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sondraf,
I know everyone is different, but I've had good results with low dose melatonin. I get it from Amazon: Life Extension Melatonin IR/XR 1.5 mg (Immediate and Extended Release). I was told not to use more than 5 days in a row, then take 2 days off. I use it primarily if I've not slept well the night before or if I've got something special planned for the next day. I get up every night to urinate, sometimes more than once, and do not feel woosy. Professor Roger Seheult MD has a YouTube lecture about resetting your circadian clock with early morning sunlight exposure - "Sunlight: Optimize Health and Immunity (Light Therapy and Melatonin)". I found it interesting and the only cost is a few minutes in the sun in the morning.
https://www.youtube.com/watch?v=5YV_iKnzDRg&t=1751s
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@sondraf I’m so glad the D stopped and you’re feeling better from the UTI. I don’t know why, but now I’m craving a baked potato. I made an egg sandwich for dinner, and it’s not sitting right.
My coffee in the morning has been tasting so bad. My husband said it doesn’t taste any different. I’m hoping my taste is not going to be affected. I am already so picky. The egg sandwich wasn’t appealing either. I only ate half. I could live on chips, though. Lol
I’m in a cycle of eat, get nausea, food digest, feel like I’m starving, and then start all over.
@weninwi I tried melatonin one time, and I had the most vivid dreams. I couldn’t do it.
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I'll try that melatonin, parents will have to bring it over but no big deal. Its certainly darker later in thr mornings now here and I don't get enough daylight sun as it is. Hoping that will start to change as I move more.
I was able to do a few short exercise videos today so energy levels definitely on the up. Ravioli sounded good for dinner, but I have to have a high calorie protein smoothie instead. Bread and anything artificial have long been no goes. Coffee too, it just tasted gross and I miss my morning cup.
Nausea seems to have passed but I'm back to constipation :/
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Appetite seems to be coming back, we are making chili this weekend and I was drooling looking at recipes and then doing the online grocery shopping. Got stuff for sundaes and new high protein smoothie recipes. Had chicken dippers nugget things, baked potato and cottage cheese, and a milkshake for dinner like a five year old. Got a week before next infusion so hoping I can pack on a bit here and at least stay level weight hopefully. Also had a scan of chest as MO wanted to check lungs. Overall feeling pretty good just a bit tired from activity today, I think my right glute is functioning for the first time in 18 months!
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@sondraf So glad you’re getting some energy and appetite. I am appreciative that you said so.
I’m on day 10. For the most part, it hasn’t been too bad, and I drove my car over eight hours to our mountain property so we could have both cars for the next few months. I have no idea what I did wrong once we got here. I started having burning from my throat down after eating a bowl of cereal for dinner. That’s all I wanted. I tried to throw up but only was able to get some acid up. I took an omeprazole this morning. Hopefully that won’t happen again. I have a massive headache too this morning. I am making sure to stay hydrated.
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Ive had some throat burning as well post food/some beverages, but nothing bad enough that I wanted to vomit it back up. Are you on regular omeprazole or just in case? I was wondering if it was indigestion but it does seem to go away eventually in my case. Its not comfortable for sure, all that from a bowl of cereal! Was it a sweetish cereal? Ive had issues with sugar causing discomfort so I dont eat it/want it (most of the cycle) - I finally got some Rice Krispies the other week because that sounded like the most benign, low sugar cereal possible compared to the open Bran Flakes, Crunchy Nut, and Life boxes.
I feel like I read somewhere on another forum about Enhertu causing significant headaches so maybe recheck the list of side effects.
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Hello all! I'm joining this thread as I am scheduled to switch over to Enhertu treatments by mid-September. I have been on Truqap for 3 months with disease progression from most recent scan.
I'm working on finding balance amidst ambivalence - hopeful this would help us gain better control of my metastases but also bracing myself for the upcoming new set of side effects.
I hope everyone is doing well!
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@sondraf Don’t laugh when I tell you the cereal. It’s like eating cardboard, but I like it. It was Shredded Wheat. Lol. I slept a ton yesterday. I woke up this morning not feeling too bad, but the nausea has kicked back in. I’m trying so hard to stay off meds for it. I just started back on a regular daily Omeprazole. The Pepcid isn’t working. It looks like the a Omeprazole isn’t either. I don’t have the burning anymore, but I was hoping the nausea would stay away. I’m on Day 11. The bad nausea didn’t start until Day 9. I hope it simmers down soon. I am going to ask for a dose reduction.
@vajra13 I’m sorry you’ll be joining. I hope you don’t have too many side effects. Please keep me posted.
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@kbl I seem to swing yet, even this late, between 'feeling lightly off, lets take a cyclizine just in case' and 'oh yo, where is the just in case barf bag and my ondestron'. I see reflux is a side effect so you may need to do some adjustment there. I managed a full buttery cinnamon roll this morning, was so proud!
Welcome @vajra13 - you can join us newcomers who are just an infusion ahead of you. I wouldnt say this is the worst drug Ive been on - maybe middle top of the league table. I doubt anything is gonna top my beloved Lynparza :) but this hasnt been too bad if you stay on top of the side effects and I started at full dose.
That being said I think Im running a low grade fever/elevated temperature again - I only had 5 days antibiotics for the 'UTI' (I never had urinary burning or pain???) and I typically need 7 to 10. I have a call with onc on Monday, see what she says. I of course returned the co-ax anti-b she originally prescribed to the pharmacy, whoops. So tired of these low grade fevers, they are either an infection or the cancer/inflammation, and I really think the cancer is pissy at the moment due to more movement and the drugs working. But it sticks in the back of your mind. I keep an eye on heart rate, O2 sat and temp, though, and its always elevated when Im due pain drugs like usual (at night). And I feel relatively cheery. Even got my needlework out for the first time in a really long time because I want to work on it while Im stuck wearing these stupid lymph wraps like a mummy.
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sondraf - Has your oncologist ruled-out pneumonitis/interstitial lung disease (IDL) as a possible cause of your low grade fever? A woman who posts on the Enhertu facebook page developed pneumonitis (IDL) after a few cycles and her symptom was low grade fever. Same or similar occured for another woman who I've gotten to know - symptom was low grade fever.
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@wenninwi - yes, Im clear in the lungs, just had a CT last week to confirm. Im hoping she will be paying more attention this time as low grade fever is what I had when I was developing significant lung inflammation on Everolimus. The fevers seem to have stopped so who knows, but that is a great reminder, I had forgotten about that.
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Hi everyone,
My 65-year-old mom has stage 4 metastatic breast cancer (ER+, PR-, HER2 3+) and just finished her 10th cycle of Enhertu treatment. They recently found inflammation in her lungs, which is at grade 1, and she’s currently on steroids for a month. Although her speech is clear, she sometimes has trouble remembering things and gets frustrated and wouldn't take her medications. Do you think these memory issues will improve once she weans off the steroids? She means the whole world to me and I have no one else to talk to.
Look forward to hearing from everyone,
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@monicasiv Hi. I’m sorry your mom is having the inflammation. Can you say where her mets are located. Did the memory issues just start when she was put on the steroids or before? Two thoughts. If yes to my question, I don’t know if steroids cause memory issues, as I haven’t had issues like that with steroids. I do know that chemo can cause fogginess and chemo brain, and this drug is partial chemo. The other thing is, if she has had the memory issues before the steroids, has she had a brain MRI to make sure there aren’t any mets to her brain? Please keep me posted on how she’s doing.
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Hi @kbl My mom had her 10th cycle of Enhertu and began Zoledronic Acid for bone strengthening on Tuesday, August 20th. The following Monday, August 26th, she started experiencing severe symptoms, including shivering, vomiting, diarrhea at least seven times a day, and her blood pressure dropped below normal. I took her to the ER that night where she was admitted until Monday, September 3rd. The CT and bone scans revealed that the cancer has spread to her skull. They didn’t do an MRI scan, but I’m wondering if that would have been more better. They also found inflammation in her lungs and started Prednisone on Friday. Since then, she’s been very itchy and confused from Saturday, August 31st. I’m unsure what to do next. She was doing well before starting this latest round of treatment. I'm at a loss. Please help.
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@monicasiv I can’t even imagine how scary that is. I’m wondering if maybe she has a problem with both medicines together. The first infusion of Zometa, the Zoledronic acid, can be rough. After my first infusion, I felt like my bones were going to break for three days. It was very rough. I’m just wondering if your mom had a reaction to it that it would take a week. It usually happens within a day or two. I had chills, a fever, and horrid bone pain. I also have skull mets. Did she have both infusions on the same day? I’m wondering if that’s too much for her system at once. She was handling the Enhertu okay before that? Please understand I’m not a doctor. I’ve also just started and only had one session of Enhertu.
There is an Enhertu Facebook group. Can you join and ask if anyone else has had this problem.
I’m so sorry she’s going through this.
Also, do you think she could possibly be allergic to something, maybe the steroid or the Zometa? The itchy sounds like an allergic reaction. I would call doc and ask if she could be allergic. Did they not address the itchiness when she was in the hospital?
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Hi @kbl Yes, she received both infusions on the same day. The issues started three days later and worsened over the weekend. Given her frailty, it probably intensified the symptoms.
I’ll be meeting with the oncologist next Tuesday and will ask about the scan. I’ll also talk to the pharmacist to see if the drug combination might cause an allergic reaction that day. I took her to the ER last night. They don't know the cause of the itchiness, but recommended antihistamines. She also becomes easily irritated by noise now. Could there be a reason for this?
Also, can you tell me about the Facebook group? Is it called the Enhertu Group? I’m feeling quite helpless right now, so please keep my mom in your thoughts and prayers.
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@monicasiv I can’t even imagine how frightening and frustrating it is. I think an antihistamine might help the itching. I’m sorry, I don’t know what could be causing her to be irritated by noise, but if she’s confused, it may have to do with what’s causing that? I hope that once she’s off the steroids, the confusion goes away.
Here is the Facebook page link. I don’t think you can just click on it, so hover over it and copy and paste it into a browser. That should work. I hope you can get some responses there as well. Please keep me posted.
https://www.facebook.com/share/g/qDX2S9rNT9KdPaRa/?mibextid=K35XfP
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@monicasiv I found this from Mayo Clinic on Zometa. Some of the side effects are listed that you’re describing. Again, I’m definitely not a doctor, so hopefully your mom’s doctor can find out what’s causing the things that she’s going through.
https://www.mayoclinic.org/drugs-supplements/zoledronic-acid-intravenous-route/side-effects/drg-20066951
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This is really helpful. Thank you so much for sharing this. It always helps to talk to other people. The nurse did mention that she might experience flu-like symptoms with the bone-strengthening treatment, but I didn't expect it to be this bad. I'm going to keep praying that it's just a temporary side effect of the treatment. I'll definitely keep you posted. Thank you again! ❤️
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@monicasiv I hope she starts feeling better soon. Some of the side effects of these meds are pretty scary. Thank you for keeping me posted.
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monicasiv,
So sorry about all the symptoms your mother is experiencing. It's always hard to figure out if symptoms are due to the cancer or the drugs, but I concur with kbl that getting both Zometa and Enhertu on the same day was probably too much for your mother. I always get my Zometa infusion on a separate day, even though it means an extra trip to the infusion center. I also encourage you to join the enhertu facebook group. It is very active. I hope your mother starts to feel better soon. I'll remember her in my prayers. Keep us posted.
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@weninwi I see on the FB page your are asking about a port. My Georgia doctor has gotten one approved already, as I asked if we could talk about it on the 12th for my second infusion. Please keep me posted on what you decide. Also, she has approved dropping Enhertu to 80% as of my second infusion. I’m really happy about that.
@monicasiv How is your mom doing after a few more days?
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@kbl Thank you for checking in. She’s feeling much better now with no more itchiness or memory lapses, but she still has some occasional breathing difficulties. I think receiving both treatments on the same day was too much for her body which likely triggered symptoms like fever, shaking, fast heart rate, low blood pressure, confusion, vomiting, and diarrhea. I plan to talk to the oncologist about the possibility of spacing out these treatments. @kbl and @weninwi Do you normally receive them a week apart?
Also, my mom developed grade 1 lung inflammation due to this chemotherapy, so the plan is for her to finish her steroids (prednisone) and take a 6-week break before restarting Enhertu at a lower dose. I’m hopeful this break will help her. The last two weeks have been tough, but it’s a relief to see her gradually returning to her usual self.
Thank you all again for your prayers. 💗
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monicasiv,
I think one week separation should be enough. Every drug has to be metabolized and cleared from the body, usually through the liver or else the kidneys, so I think having these critical organs clear one drug at a time, if possible, is best along with always keeping well hydrated.
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kbl,
The 80% dose for me has been well tolerated. I swing between mild constipation and overly soft stools, some mild fatigue, but not much else. I haven't yet decided to go ahead with the port, but at least I've overcome some of my mental/emotional resistance and have decided it would be a reasonable choice. Now it is more of a timing decision.
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Had my second infusion Wednesday and feeling well so far, but I'm on a few days steroids after so I'm chalking it up to that. Using the pain free and appetite enhancement window to really get moving, get some strength back, and eat while I can lol. Only lost 2 lbs this last three week cycle, so I'm hoping continuing my high calorie smoothie regimen, my light weights for the body parts that work, and forcing myself to do more even when my leg is stiff will keep me level this next month.
I did also get two bags of blood as hemoglobin was low again, but potassium was finally normal! Now sodium is low ugh. But the chest lump is definitely softer and less, and while the hip is disguised by the lymphadema, if the swelling is down I think it may be supporting more weight. We'll see. And my resting heart rate and temp and everything are all perfect, so who knows what goes on in the human body.
I'm desperately wanting a port because I hate having to get the picc flushed weekly when I'm on a three weekly schedule and the whole showering thing. Intend to speak with MO about that next time. I think the surgery would be a bit close to the chest lump unless they put it on the other side.
Also think I should have a standing blood order at this point, ugh, they were chasing my mo to allow my infusion to go ahead with the low number and it delayed me by a few hours, then I had to come back thr next day and they forgot to tell me it was 2 bags and not one. Just dumb admin stuff, but I am moving back to my normal infusion day of Monday from Wednesday, which is when mo is around, so hopefully that helps.
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@monicasiv I’m so glad she’s doing better. To me that definitely points to the meds being on the same day. I actually don’t get Zometa any longer. I decided to get off after four years. I hope the break also helps her continue to get her strength back.
@weninwi Maybe we can compare notes if we both get a port. I have to research where to get it.
@sondraf I’m glad things are starting to get better with your infusion but sorry you have a low hemoglobin. That is great that your lump is shrinking. And there is nothing more frustrating than when staff screws up.
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Damn, think I may have another uti. Same feelings as last time and oh my the uh, flood last night was unreal. I was having such lovely dream about urinating in a fantastic toilet,, guess I didn't wake up in time even though I had just gone toilet an hour before. Duvet to the cleaners and other stuff in the wash. Tomorrow I'll go in for a urine sample as I've also had slight fever at night, pain in lower pelvis, and feeling generally flu-y. Make sure to drink your water and stay on top of constipation ladies!
Plus side my lymph guy said my mobility was quite improved in the last three weeks so here's hoping...
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