Anyone starting brand drug, Enhertu?
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@going2beatthis It sounds like you have found the right regime, with regards to premed steroids for you. I am going to ask the Pharmacist what she suggests my next move should be, as she is aware I would like to come off Steroids altogether.
@onlywhenitrains please let us know how you got on with the eye doctor.
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@stirfry so good to hear from you. I have been wondering about you. I would love to stop taking the steroids too! I hate those things. I have only decreased the steroids by one pill on the last night because I need to sleep! I also wonder if no sleep is worse than the benefits of the steroids. Something to ask next week during my 6th infusion. @illimae what does your MO say about not taking the steroids? I also have had some waves of nausea this time well after the infusion but have only taken two zofran as a result. It really wasn't bad and I do wonder if it was due to enhertu or something else. As for my mixed results, since the Enhertu has significantly helped my liver the MO decided it was a good idea to stay the course for now since the liver is pretty important. The bone mets progressed only slightly. This is my last option before traditional chemo and then that's it unless I find a trial.
@goingtobeathis so you don't take steroids for three days after ? Hmmm…. I wonder if we truly need them.
@chocomousse due to vacations and the MO's schedule, my last two infusions were four weeks apart. I was wondering the same thing about having the infusions four weeks apart all the time.
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@dulcea - I do not take steroids in pill form at any time around my enhertu infusion. Only the day of my treatment, 30 minutes before the enhertu is started. I was told that the dose will last for 3-4 days but that was when I started at 12mg. Now that it has been dropped to 8mg, I will check that out.
Good luck.
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@illimae Thanks for the information. Can I ask over what period you take the antihistamine? Do you use it as a premed? Not sure if I can access it here in the UK. I have been looking into an old antihistamine called Periactin (Cyproheptadine Hydrochloride). Sometimes the old drugs work the best. The Pharmacist had to look it up, and was surprised it was still available in the UK. She did not have a problem with me taking it. I wonder if it will be an alternative to taking Steroids?
I think my next move will be to cut down the Steroids by one day, will have to discuss with the Pharmacist. I also take one Benadryl on infusion day.
I am keeping very well, thank you for asking. I must be asymptomatic 🤣🤣🤣.Will let you know what the results of MRI Brain scan are once I know in a few weeks.
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@goingtobeatthis @illimae so why the heck am I taking those damn steroids? I think I'll talk to them about not taking them. I do get a steroid infuiosion on treatment day too, but I sleep all day anyway due to the nausea meds that they tell me lasts a few days (Zyprexa and Emend). I may regret it but I"m going to try.
@goingtobeatthis good luck with your brain MRI. I hope all goes well.
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@dulcea. I skipped my sixth Dex pill last cycle without asking my ONC because I, too, want to stop the steroids but I don't want to go further until I get permission. My instinct is that I don't need the steroids or anti-nausea meds, but my rule follower mentality always beats my rebel mentality.
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So, my new PET-CT scan results are in. My mBC had spread to my lungs and adrenal gland. Since my CEA results went from 16 to 1.8, I thought maybe I had reached complete remission. The hilar lymphadenopathy and 1 of the lung tumors has completely disappeared. The 2nd lung tumor has shrunken by 70% but the 1.3 cm adrenal gland tumor has not changed in size although the SUV went from 13 to 11. Don't know why that bugger is being so stubborn.
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@chocomousse Good results! I take it you are going to stay on Enhertu. As far as a bugger being stubborn, my last CT showed my liver tumors are merely stable. I'll take it! I don't have go change treatments. What is CEA and SUV?
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@onlywhenitrains that's exactly what I did last time too because I just wanted to SLEEP! I am a rule follower too.
@chocomousse that's great news! I hope you continue with great success!
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@dulcea I saw the eye doctor. My blurriness is due to a cataract in my left eye. I will have surgery soon. When I last saw the eye doctor in April (a few weeks after I started Enhertu), my cataract was too small to warrant surgery. Now, not so much! He acknowledged that Dexamethasone could have been the cause of the change, but he did not recommend stopping the steroid, as surgery would render the problem moot. I don't have other problems with Dex (like your sleep issues) but I am still going to ask my ONC about lowering the dose.
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@onlywhenitrains Wow! Good catch on the cataract. No wonder your vision was still an issue with your contacts. Hopefully the surgery helps with that. Thanks for letting us know that the steroids could do this too!
I just had my yearly exam with my eye doctor and she said that she was surprised I had no sign of cataracts at my age (61), but I will keep this side effect in mind if my eyes get worse.
I had my 6th infusion yesterday and asked to stop the evening steroid so I could sleep and not have such bad constipation during those 3-4 days. The doctor explained that the steroids work WITH the Emend (aprepitant) over a few days to suppress any nausea I might have. She considered a sleeping pill but I didn't want to add anymore meds to my list. She mulled it all over but agreed that stopping the evening dose is worth a shot.
It seems the steroids they give us are worse than the chemotherapy!
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@dulcea Let us know how you do with skipping your evening dose. I'm seeing my oncologist next week before my 10th (!) infusion. I have not had any issues with nausea. Of course, that could be from the steroids, etc., but my gut tells me I don't need so much to curb any nausea.
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Are you guys taking the Enhertu with Perheta or alone?
I met with my oncologist and he says I'm doing really well and qualify as an early responder per the Destiny Breast09 trial eventhough the adrenal tumor is still there. He thinks it's safe for me to lower my Enhertu dose from 5.4 to 4.4. My dose reduction options are 4.4 mg every 3 weeks or 5.4 mg every 4 weeks. I agreed to the 4.4 every 3 weeks but now I'm getting cold feet and feel like I should stick to the 5.4 mg as I don't want my cancer to rebound or develop a resistance. My lungs and heart looked good on the PET-CT scan so no damage from Enhertu so far. I read that ILD tends to happen at around the 5th dose. I've had 1 THP dose and 4 E/P doses so far.
I would welcome a lower dose to mitigate my nausea and stomach pain but not at the expense of the cancer progressing.. My oncologist was optimistic and thought that the 4.4 mg dose would be just as effective. Ugh. I don't know what to do.
Regarding the persistent adrenal gland tumor, I read that the adrenal gland contains fewer blood vessels so it's harder for cancer drugs to reach it. They tend to shrink slower than tumors in the lungs and liver.
@onlywhenitrains - CEA is a tumor marker blood test that they take right before each infusion. The lower that number, the better. SUV measures how active a tumor is. High SUV means super aggressive, rapid cell division indicative of cancer so the lower that number, the better.
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@onlywhenitrains the steroid experiment went well. I get them during the infusion along with a slew of other meds that make me sleep on infusion day (day 1) right until the next morning. I did have a little trouble sleeping night 2, but not after that. Yay! Other benefits of only taking the steroids once in the morning: no red face and neck, no puffiness, much less constipation, less stomach pain, less thirsty, and MUCH less lower blood sugar (from 300 to 189!).
I had a few waves of mild nausea that lasted about 4 minutes and took a zofran once, but I'd say it was worth it to me.
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@dulcea That's great news, especially about the blood sugar. You must be so relieved to see a reduction in all of those side effects.
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So I started on the 4.4 mg of Enhertu on Monday. Was also started on different nausea pre-meds, Palonosetron and Focvinex (instead of Varubi) this time and on day 3, I don't feel bad. Hopefully, my next lab test will show continued regression.
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@chocomousse. I'm impressed that you know the anti-nauseal pre-meds you are getting. Whenever the infusion nurse calls for a "check" and then she reads off the meds, I hear gibberish. Maybe because I don't have nausea issues. As I've mentioned, I want to step down from pre-meds and post-infusion steroids. Infusion No. 10 tomorrow. I'll ask my oncologist what she thinks about cutting down. From what I can gather, a tiny cataract MAY have gotten large in a very short time due to the steroid (Dex). I understand you had a hard time figuring out whether it was worth it to cut your dose in order to alleviate SEs. I'm only looking to cut down my meds because I don't want drugs I don't need. I should probably have cut down my Xgeva more before I developed osteonecrosis! I appreciate your struggle and I hope it all goes well for you.
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@onlywhenitrains, thank you. The decadron and tylenol were taken off my treatment plan on Monday but I requested them as I was afraid to get the infusion without them. Maybe I'll try to go without them the next time with a lower dose of the Benadryl too.
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I saw my oncologist today prior to Infusion No, 10. I can cut down my Dex pills by half! I still have to take them twice a day for three days after Enhertu, but I can chop the pills in two. This may not prevent me from getting a cataract in my other eye, but at least there's less medicine going into my bloodstream. In other news, my port had to get drano-ed again. It's so cranky every time. Today, it refused to work and it needed the de-clogging big gun.
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Thought I would check in with everyone since I just realized I am no longer getting email notifications about the threads I want to follow. I'll have to look into that.
@chocomousse what was your final decision on lowering your Enhertu dose? Those decisions are always so hard to make.
@onlywhenitrains that is interesting that they still want you to take the decadron twice a day, just cut in half. Have your side effects from those been any better? I too didn't know what pretreatment meds I was getting on infusion day until a few cycles in. I finally tracked them down and looked them all up. It looks like all our doctors have different ideas on what will help us.
I have been working 4 1/2 hours a day for two weeks, then I take infusion week off. By Friday of the working weeks, I am ready to just go home and sleep for a long time, but keeping busy during the week is so helpful. I don't know what I would do without the drama at work LOL. For those who are interested, I think working with reduced hours on Enhertu is manageable.
I am dealing with ascites again which absolutely sucks. It's not as bad as last time when I accumulated the fluid quickly and had to be drained. Now it comes and goes. Sometimes I am 6 months pregnant and sometimes I am two months pregnant. Stretchy pants have been in the amazon cart a lot lately. I didn't realize that back in May when I first had it, I also developed an umbilical hernia from the pressure. Last month, I met with a surgeon to determine if it was dangerous and if/what we should do anything about it. He said that repairing the hernia is worse than leaving it due to the scarring that occurs. Either way, having holes in your abdomen and then developing a lot of pressure from the fluid can wreak havoc. Thankfully my hernia is small at this point. I am considering having a permanent drain put in my abdomen instead of just having it drained when needed. I hate feeling like a ticking time belly! I will also cross post this information on the liver mets thread as there is not a lot of information here on this topic. And in my case, nor do the doctors offer up any education on this topic besides " it will happen again".
My last scan in August showed that Enhertu had reduced the amount of liver lesions -yay! finally!- but I worry that since the ascites is accumulating again and it's no longer doing its job. I guess I'll find out in November unless something happens before then.
I hope everyone is doing well.
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@dulcea Ascites shows up from time to time on my CT results, but no one has mentioned it so far. I guess it's not enough to warrant treatment. I'm sorry it gives you trouble. Good to hear that you enjoy your work schedule, though.
I've been on the reduced Dex for a day and a half. So far, no difference!
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@dulcea I was given the lower 4.4 mg dose on 9/15, instead of the recommended 5.4 mg dose. So far, I'm tolerating this better with only one bad nausea day, although my sense of taste is off and I'm extremely fatigued.
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Hello! As promised, I thought I'd follow up here with the results from my first scan since starting Enhertu. I've had 4 treatments so far. Got my scans on Monday and I'm happy to report that I have had a complete response! I'm super happy, and my oncologist was extremely pleased with the result. I'm hoping this regimen will keep me NEAD again for a good, long while.
Noticed the recent comments re: steroids. I just dose reduced my pre-meds from 12mg to 8mg and have not ever taken oral steroids after. I still get the full dose of Enhertu at this time. I had been thinking that the steroids may have been making me feel as squirrely as the Enhertu. I have to say that I really didn't miss the steroids and I did feel much more like myself. Maybe very slightly more queasy day-of than normal, but not that noticeable and easily quashed with the Zofran. I also take Olanzapine nights 1-4 post-chemo and that is the stuff of life!
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@more_cowbell Such great news! I'm not back to NEAD yet, but I have hopes especially since I am tolerating Enhertu very well (aside from the cataracts). I reduced my post-treatment steroid regimen by half after my last infusion. No difference. I'm thinking I can get off the orals altogether. I have my regular CT and nuclear bone scan scheduled prior to my next infusion. We'll see! I'll post after the results. Thanks for the update.
On another note, my freaking port! It's my second and it's still cranky. I'm tempted to go IV for Enhertu from now on.
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CT - liver still stable. Nuclear bone scan. Still NEAD. I'd like a reduction in the liver mets, please, but I'll take it. Infusion No. 11 on Thursday morning. I'm flying to LA that night for my nephew's wedding. After that, an old friend and I will meet and do the rides on Santa Monica Pier!
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@more_cowbell, that's great news! To have a CR after just 4 treatments is amazing. How many tumors did you have? What organs did the cancer spread to? How much longer will you need to stay on the Enhertu. Are you taking it alone or with Perjeta?
I started out with 4 tumors and am now down to 1 and a quarter after 4-5 infusions.
I had my 2nd dose of the Enhertu/Perjeta at 4.4 mgs on 10/6 and my tumor markers are still decreasing and in the normal range but the tumors are still there.
My Benadryl was reduced from 25 mgs to 12.5 but I still crashed when I got home. This Zofran/Focinvez and lower dose Enhertu has really helped to reduce my misery and weight loss.
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hi everyone
I’m not really sure if this topic fits in this part of the form, but maybe I’ll get to it soon.
I’ve been dealing with a lot lately, especially with my tumor markers — they’ve been giving me a hard time.
I honestly don’t know what my doctor’s decision will be in the next few days.
I caught a virus about six days ago. My fever kept spiking up to 39°C every four hours, and I’ve been taking Panadol regularly. It’s a little better now, but I’m still taking Panadol every six hours.
I’ve completely lost my appetite. Right before it’s time for the next dose, I get chills — like intense shivers — then a bad cough starts, and sometimes I even throw up.
What worries me isn’t the virus itself. My doctor said it’s a common one going around and didn’t prescribe anything special. So I’m just sticking with Panadol, fresh juice, and simple stuff.
But the cough — that’s what’s been bothering me. It actually started about two months ago. It happens whenever I smell anything — perfume, detergent, the kitchen, even clean clothes. As soon as I go outside or open my window, it disappears. But now, with this virus, it’s gotten so much worse.
My tumor markers have been rising for a year. When I first started Kisqali, they went down slightly — from 90 to 74 — but then they started climbing again, all the way up to 227 in my last test on Thursday (CA 15-3). That’s what’s worrying both me and my doctor.
I had an MRI for my spine — it looked fine. The PET scan didn’t show anything either. But my doctor still wants me to do a full-body MRI, just to be sure.
So my question is: how does coughing usually start in patients with metastatic breast cancer that has spread to the lungs?
Because my cough is dry and random — it just starts suddenly and stops just as suddenly.
If anyone has gone through something similar, I’d really appreciate hearing about it.
I am so scared and anxious because the doctor told me that the second line of treatment will be enhertu
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@more_cowbell great to hear that you had a complete response.
@onlywhenitrains good news you are still stable.
@chocomousse good to hear your tumors have reduced in number. I am also er- pr- her2+++. Where are your mets?
Just got my MRI results and reduction in number of brain mets and size. Bone mets still NEAD. On another note my hair is slowly growing back, still too short to go without a wig. Next infusion tomorrow. Still taking 8mg Dexamethasone day 1, then 4mg for 3 days. My Oncologist says I still need it as I get slight sickness on days 5 to 7. I take ondansetron (Zofran) for nausea as required.
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