Anyone starting brand drug, Enhertu?
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@sondraf Those UTIs are the worst. Ugh. There have been times I’ve been so prone to them. I started taking cranberry Azo pills and eating yogurt. My urologist said drink cranberry juice, but I just can’t do it. Pills are as close as I can get. I hope you can get rid of it quickly.
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sondraf,
What an ordeal! Has any doctor given you a reason for your repeat UTIs, other than women are more prone due to a short urethra? I started having more UTIs after menopause and topical estrogen at the opening of the urethra helped by increasing the tone (i.e. tightness). Now since breast cancer and no estrogen, I tried a different approach - I stopped wearing pajamas and only wear night gowns and I either shower or do pericare with Dial soap every night. Sounds silly, but I think it has helped. What about washing the peri area with Chlorhexidine liquid soap like they give to patients before surgery? It wouldn't take much. Not sure if there's a risk to long term use of Chlorhexidine, but I think surgeons use it daily.
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I made up a little spray bottle with some similar to chlorhexidine (maybe its the same actually) for times when need a bit more clean down there. I got hauled in to the critical assessment unit today and good news! no UTI. Chest tumor started bleeding though so that was fun, but my oncologist was on staff so she got to see it first hand. Radiotherapy appt Tuesday even though I am so so leery of letting those folks near me again with a beam after whatever the hell they did to my hip.
Im hoping as the leg lymphadema goes down itll be more comfortable to sit on the toilet itself and keep things clean - even if it wasnt a UTI this time, who is to say there wont be others?
Love cranberry juice, I like to have it slightly diluted on ice :)
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Well Im glad I read back to my notes in the thread from the first infusion because bang on schedule like last time my hip feels like its ready to separate from my body its so swollen or.. something. I dunno whats going on in there but I was having big problems this morning getting that pain under control and in moving the hip in certain directions is still difficult without additional help. I thought perhaps it was due to having lymph massage two days ago but no, I think this gets to be my lovely side effect. Here I was thinking I needed to email pain control again about upping meds and I see I said that last infusion too and I ended up having that call to find out ways to reduce my painkillers. Ok well good to know cause once that passed I was doing a lot better. (For future me, today is Day 10, leg started having muscle and bone pain on Monday, Day 6)
Ill talk to MO about possibly not having dex post infusion next time. I remember I had it post radiation in November and felt great then the pain came on similar to this. Its frustrating but if I know it passes in a day or two and can come up with some strategies for management then great. I wouldnt have thought four days of low dose (8mg) dex would cause steroid withdrawl symptoms but I dunno, kinda all fits with what Ive experienced the last few days.
My new sheepskin slippers arrived and I have it on my good foot as my legs are elevated. So comfy and not overly hot like socks! At least that was something nice to happen!
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I had my second infusion Thursday. I have had minor nausea, but the doc prescribed a higher dose of promethazine, 25mg instead of 12.5, and it’s doing the trick. I feel good on Day 3, just waking up. I slept great too. I hope it continues. I did get a reduced dose to 80%. I’m going to get a port, have been scheduled for an echo, as doc in Georgia said she won’t do the next infusion without one, and I’m also scheduling a mammogram on my left breast because after 11 years, I feel a lump. She said it feels about 2cm. The reason for the mammo is if it is something, she wants to make sure it has the same receptors. I will be shocked if it is. Lobular is so sneaky.
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I seem to be out the other side and am getting more comfortable by the day. Did a LOT more today than expected, a lot of fall cleaning and tossing junk, made that pumpkin bread, put stuff away, no, it was just a really productive day overall. Wish I could eat though, I don't have nausea just not much appetite and still can't seem to tolerate a lot of textures. Oh well, ice cream for dinner for a few days it is!
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@kbl - how have you been? I think we were at the last Wed's zoom meet-up together.
I'm on Day6 of 1st infusion, nausea and light-headedness have been kicking my ass since Day3. Keeping up with my scheduled intake of nausea meds. Am able to eat and keep things down, thank goodness, but dizziness hits the instant I get up and move around. Also having mild nose-bleeds, i'm keeping an eye on it.
I'm looking forward to better days ahead!!
I hope you are feeling well🙏
EL
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@vajra13 Hi. Can you give me your first name so I can remember. I usually go mostly to the Monday meetings. I’m realizing that Day 4 and 5 are pretty tough. I did the same thing as last month and slept most of the day in Day 4. I’m having some bloating and constipation, so I’m trying to keep on top of that. How are you feeling today? Any better? I am at 80% dose, and I think it will be better.
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@kbl I go by "EL" on the zoom meet-ups, my first name is Laureen. I asked Winnie (Wed moderator) about you and she said "kbl is Chris from monday group. We had Chris Hill join last Wed, I assumed that was you! lol.
Today is my Day7 and my first day to wake up without dizziness and nausea, woohoo! I was able to go to a medical appointment and do grocery shopping without much side effects. Still a bit weak and forgetful (i.e. I was trying to lock my car until I realized I haven't turned the engine off, hehe)
dZofran and Compazine constipate me, so I take Senna which helps get things moving. I am taking it one day at a time, studying how my body responds with this treatment. I initially planned on returning to work supposedly this week, but due to changes in my treatment plan, it will have to be pushed back.
You might have discussed it prior but what is the reason you are on 80% dosing?
I hope you are feeling well after your 2nd infusion, despite the bloating and constipation.. I'm glad we are messaging. It helps to have treatment buddies!!
Sending you wishes of wellness🙏
EL
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@vajra13 Ah, no, I’m Kris B. I do attend some Wednesdays but not many because it’s during dinner time for me. I’m so glad you’re feeling better and got to get out, even if it was to the doctor and grocery store. Oops on not shutting the car off. I have never been on any infusion chemotherapy, and even though Enhertu is partial chemotherapy, I felt like 100% would be too much. I honestly feel about the same as the first infusion this time so far, except much more bloated.
I hope to be able to meet maybe at a Monday meeting. I’ll keep you posted and you keep me posted. I’m hoping I feel better on Day 7 too.
Do your legs ever feel weak? Mine are kind of mushy right now.
Hope you keep feeling well too.
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Im heading out shortly to a rads onc consult, but I have been having really strange intestinal cramping and oh lord the gas pains! And I just wasn't right in the head (mega mood swings) yesterday or the day before. Im on I think Day 15 of this cycle and was having more issues with low appetite again the last few days but I think that may be passing. Eating protein (scrambled eggs and a few sausages) for one meal helped quite a bit. Going to try low dosing Metamucil, although I do love an apple in the evening too.
Frankly I think a lot of my issues right now are driven somewhat by a low blood sodium number. I just don't 'feel right' at all, especially with the lymph and compression situation. Something isnt right there and Im at 128-130 mmol/L for sodium usually which is like 7-10 points below normal. My blood pressure is fine but I start walking and my heart rate shoots up. Shall try and eat a bit more salt over the weekend and electrolyte sachets (I think thats why the eggs and sausages help too!) and speak to MO about this on Monday. They tried giving me a bag of solution/fluids once and it didnt move the dial at all, although I see that can take some time to raise the sodium level. I just really dont want it dropping further and everyone is so focused on my potassium level I worry this has been passed over.
BTW Im really hoping these are positive signs Im starting to see - I noticed I was putting more weight through my bad leg the other day, that we seem to have progressed through a real bad sore glute phase (that thing hasnt been functioning fully in years!) and just in general I dunno, maybe. Hard to tell between this and the lymphedema but I want to get up and move and walk and do stuff I just have no stamina. Time to get out my rollator, The Steed, for a wheel about the village - there is a flat area I can walk and measure in the square across the street that would be good.
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@sondraf What you’re going through does not sound pleasant at all. I almost felt like throwing in the towel yesterday but feel a little better this morning so far. We have a lady in our group that has low sodium levels and was told to eat a small bag of potato chips every day, and it has helped her. I hope you can get it situated. I hope you can get some of your stamina back so you can walk.
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Has anyone gotten a yeast infection on this? I’m thinking that’s what’s going on right now. The itching is getting intense. My wonderful husband is traipsing to the store to hopefully get me some relief. Not feeling well on top of it, I’m having a rough time.
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So I’ve gotten my tumor markers all back, which I do know don’t work for everyone, but they’re hugely accurate for me. I literally have never had tumor flare on a medication, including Orserdu, and it’s very prevalent on that drug, but mine went down consistently for five months. Anyhow, my 125 went from 138 to 633 this month, and my 15-3 and 27-29 also went up 40 for one, 50 for the other. Anyone else have flare before they started coming down? That was after my first treatment.
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@kbl - how do you get tumor markers checked? i only do the quarterly pet ct scans. thanks! Sorry to hear about the flare ups. what did your MO say?
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kbl,
Sorry to hear about your tumor marker results. You're in my prayers with the hope that you just need more time on Enhertu to see better results.
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Started cycle 3 today. I was sitting in the chair and they said 90 minutes infusion time I was like Yo. Hold Up. Isnt 90 mins just for the first and if no reaction then 30? I did 30 last cycle. Cue a bunch of phone calls all over and voila! saved myself a hour :) I dont know where I read about the 90/30 thing - probably on here somewhere - so whomever posted that, THANK YOU.
Constipation is getting to be a real issue though, so Im going to be be pushing a ton of water and my new Laxido sachets until we get things on the move, on the regular. And I discussed my steroid crash with the oncologist and I am going to try taking half per day until I run out so I have a soft landing. If worse comes to worse I have the other anti-sickness pill in the form of Metroclopermide or whatever it is which goes through you quick and causes D, but needs must ladies.
kbl - Im trying to go by the size of my visible soft tissue mass (the chest buster which started literally spurting blood the other day like a horror film) and pain in my pelvis. I think its smaller, or at least not any larger/wider, but my pelvis isnt feeling so great the last few days. Today was not a good day for it and it hurts to stand on it completely. We dont do tumor markers every draw so Im not real sure where Im at with those, but she hasnt said anything so Im guessing they havent taken a big tumble like they did the first month on Everolimus. Id say mine are pretty indicative of the state of play, though. I did find that I was placing a TON of expectations based on reading all these other success stories, and it was causing a lot of stress so I've tried to cool it a bit - my body and the mutation hand Im stuck playing are what they are and I cant change that.
Alright, until I lose my appetite its time to see what goodies are laying about the house Ill wish I could be eating by this time next week. Start off with some of that chocolate pudding in the fridge, maybe move on to that pear tart on the sideboard, and see what else is in the bags of stuff mom and dad brought with them Ive forgotten about! I lost another 3lbs, and while I dont know if some of that is water coming out of my leg, its concerning.
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@sondraf That doesn’t sound pleasant at all. I’m glad you were able to get the infusion in 30 minutes. I hope you have a good third round three weeks and can enjoy your snacks.
After months of wavering back and forth, I have made the decision with my family’s support to stop all treatment. I am not willing to continue feeling this horrible on Enhertu and do not want to continue with any other medications. I won’t be entering hospice at this time, as I don’t think it’s necessary.
I wish you all great success with Enhertu. I will still come back and read how you’re doing.
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You're in our thoughts, @kbl!
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@moderators Thank you.
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Ah @kbl Im sorry to hear that but I completely understand. I know Ive started to wonder in that direction lately too, its so very tough to keep enduring. Best wishes for a wonderful 'retirement' from MBC and that when the time does come, hospice treats you right and you get a good ride into the sunset.
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kbl,
I'm so sad to hear of your decision. You've been such a good support, offering helpful information and encouragement for a long time. I hope and pray for your continued strength and peace of heart during this time with your family.
Wendy
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@weninwi Thank you so much, Wendy. I think I’m finally starting to come out the other side of Enhertu hell, and I have my appointment with oncologist on Thursday, the 3rd. I will be asking about setting up palliative care just in case I start to have pain. I am not having issues eating at this time, so that will be my main indicator in the future. I miss you at our meetings. Hugs. 💕
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