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Anyone starting brand drug, Enhertu?

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Comments

  • denny10
    denny10 Member Posts: 421
    edited February 2023

    pmw , I was surprised how unwell I felt for over a week, walking was an effort. Sorry I cannot give you any advice I hope you feel better soon.x

  • ninaca
    ninaca Member Posts: 232
    edited February 2023

    PMW- hope you are better now. I was warned about day 4,5,6 and made sure to continue zofran if I felt nauseaus. I'm better by the middle of the second week, almost normal, just need to eat toast when I wake up in the morning.

  • nopink2019
    nopink2019 Member Posts: 384
    edited February 2023

    Re: eating blamd food early morning. I have a very small appetite and can't eat much at a time. In the afternoons I frequently drink a vanilla Premier Protein as a boost. I have started drinking about half of one in the middle of the night when I wake up to go to the bathroom. Doesn't matter if it's refrigerated, just tastes like milk. But it keeps me from being woozy in the morning, as it's a long time between dinner and breakfast.

  • nkb
    nkb Member Posts: 1,561
    edited February 2023

    Hi,

    I just had # 8 and am doing well, constipation an issue and I decreased some of my zofran to 4 mg - may decrease it some more or skip a dose. I agree- vague GI symptoms come and go - some reflux-

    My previous TM went down, I haven't seen them for this month yet- they seem to fluctuate though- not sure when my next PET will be. Someone told me their TMs went up for a year before coming down.

    Hair has stopped shedding, little length is left, it did start re-growing at about #4 filling In the crown and continues to grow- using the Paxman cold cap- not sure if it helping - have heard so many different experiences with hair on this drug.

  • denny10
    denny10 Member Posts: 421
    edited February 2023

    I have just had round 3 . No hair loss {not cold capping] . No sickness, I am taking lanzoprazole [sp?] this week which has helped prevent the gastro pain I felt from my throat to my bottom before . No constipation or explosive D , which I had on the 2 previous rounds. I do feel feeble and have moderate fatigue; if I do something then have to sit and rest. Last round I felt 'normal' enough to drive and go out and about on my own in the last week. I was considering asking for a dose reduction , but as the side effects have lessened or medical staff are suggesting how to prevent them, I have changed my mind for now . I am hoping its working for me and you .x

  • bsandra
    bsandra Member Posts: 1,030
    edited February 2023

    It is so great that we recently see here so many HER2-(low) people who benefit from initially HER2 therapy. Amazing!

    Saulius

  • illimae
    illimae Member Posts: 5,739
    edited February 2023

    I haven’t heard that but definitely understand needing or wanting a break. Very interesting

  • anotherone
    anotherone Member Posts: 555
    edited February 2023

    since Friday it is too short to see the difference. Most likely you will feel it well before the scans. Wait for a week or two.

  • pnw
    pnw Member Posts: 36
    edited February 2023

    I had my 2nd Enheru infusion today; scheduled one every three weeks.

    I walked out of the chemo straight away, we went to the supermarket, I made dinner at home. Last time I went into a coma on the couch for 4 days so this is certainly an improvement.

    Also met with my MO today who is attentive, she reduced today's Enhertu dose by 30% from last time. Every MBC med I've taken so far has been reduced on subsequent visits, they're just too strong for me.

    This is my fourth drug in 12 months, a year - Lynparza failed, Xeloda failed, Vinoralbine failed. And while that was failing so was I.

    I am cautiously optimistic. My worst complication from all of this breast cancer has been the peritoneal fluid swelling which can be unbearable when not in control. Enhertu is supposed to specifically address that symptom and I sure hope it does.

    Three weeks from now, do it again. Fingers crossed for all of us that this stuff is as good as they think it is.


  • jron
    jron Member Posts: 8
    edited February 2023

    After 8 rounds, I had near complete resolution of bone mets and vastly decreased mets and decreased size in my liver.

    I have been managing side effects really well. Bloodwork has been great. ca 2729 down to 56 from over 800.

    After 11 rounds I just had a repeat scan...now I show progression and new areas of bone, liver and lymphnodes.

    Has anyone experienced this? I am perplexed (and of course heart broken and distraught all over again) because my bloodwork and numbers look good, tumor marker good and I feel like I have managed the drug well.

    I have not discussed in detail with oncologist on next steps but I of someone who was still kept on this treatment even with progression. My fear is that I have failed so many lines of drugs prior to this. I am frustrated and feel crushed all over again after letting my hopes up that 'this is the one'.

    Please give me in info you may know of as far as data and tracking that is current? Thanks.

  • nopink2019
    nopink2019 Member Posts: 384
    edited February 2023

    I had 3rd infusion of Enhertu. Only significant SE is fatigue, which has really gotten me down. Liver bloodwork showed slight improvement. Still use oxygen for SOB & coughing while sleeping and lots during the day when I'm home. I purchased POC (portable oxy concentrator) and use that for my 3hr drive to MO. Medicare wouldn't cover portable one for months & months, so DH found refurbished one on internet. Very happy to have it. MO prescribed cough syrup w/codeine to take before bed. Seems to reduce coughing when lying down & rolling over. I'm trying to add more activity to my days & see if I can regain some energy. MO decided to do next scans before 5th scheduled imfusion instead of 4th to give drug more time to work. I've been having thoracentisis every 2 weeks, which would be tomorrow. Don't feel the need yet, so good news there. Overall, slightly more optimistic.

  • pirate_girl
    pirate_girl Member Posts: 31
    edited February 2023

    Hi jron -- very sorry to hear about your progression on Enhertu. I have been through several lines of treatment, too, so I definitely understand how disappointing this is. I hope your MO has some good ideas about next steps. Please keep us posted on what's next for you.

  • denny10
    denny10 Member Posts: 421
    edited March 2023

    I had my 4th round of enhertu last week. I asked for a lower dosage as I was just beginning to get some energy back and then it was time for the next infusion. lethargy and fatigue was really effecting my q.o.l. Apart from that my hair is still growing, i am not getting sick , lanzoprazole is controlling my gerd, a couple of incidences of diarrhea controlled with loperamide ,so all bearable side effects. I do get grumpy and short tempered in the first week after the injection. Strangely, I had to stop driving as my speed perception was altered, I felt as if i was speeding and i was only doing 25 miles per hour., anyone else noticed this? I am hoping I 'recover ' quicker this time around. Wishing everyone a good week .

  • denny10
    denny10 Member Posts: 421
    edited March 2023

    I forgot to say I am having recurrent urinary tract infections , three times out of 4 infusions . It adds another layer of doctors appointments. I am convinced that they are related to the Enhertu, but the oncology pharmacist is newly qualified and has not got a lot of experience so keeps referring me back to th GP. Any suggestions, as it's getting me down.

  • illimae
    illimae Member Posts: 5,739
    edited March 2023

    Denny, I have no experience with UTI’s but I’m sorry you’re going through so much. I wish you relief and quick

  • weninwi
    weninwi Member Posts: 785
    edited March 2023

    denny10,

    If your UTIs are due to the medication, I don't have any experience or suggestions. But if due to other reasons, this what I've done with good results:

    As I got older and menopausal I started having more UTIs. So I made some easy changes and haven't had a repeat UTI in years (I'm 74). I stopped wearing pajamas...now only wear nightgowns (no panties). Every night before bed (if I don't take a shower) I do "peri-care" - I wash up at the sink using a wash cloth, soap and warm water. Also I drink plenty of water during the day to keep the urethra flushed.


  • ninaca
    ninaca Member Posts: 232
    edited March 2023

    PNW- I get my 3rd infusion tomorrow. Two weeks after my first infusion my symptoms from bowel and peritoneal mets seemed to disappear! By the third week, my markers went down 1000. I'm so relieved with the results of this drug so far. Scans will hopefully confirm the progress end of April. Is your peritoneal fluid symptomatic of your mets? Where did you read that this drug is for these kind of symptoms? I too am cautiously optimistic. Do you have Lobular BC?

  • denny10
    denny10 Member Posts: 421
    edited March 2023

    Thanks for your practical suggestions. I have spoken to my GP. He thinks it is the chemo. I am going to have a urine test, then he has suggested I may need to have some low dose antibiotics used prophylactally, one tablet a day for 3 months, then test again . I will take anything which releases me from the need to be close to a bathroom all the time and I can get some uninterupted sleep. Cancer and it's treatment, it just keeps on giving, aaargh!!

  • woodlands
    woodlands Member Posts: 72
    edited March 2023

    I am Francie from the Monday virtual MBC group. Known for my positive attitude (effervescence) and hand modeling of Udderly with 20% Urea.

    I had my first round of Enhertu a week ago. My MO gave me infusions of medicine prior to Enhertu to prevent vomiting. They just give you preventative medicine up front at my hospital, so that is helpful.

    I am taking stool softener and Metamucil because I was very uncomfortable not having my daily bowel movement. This is helping.

    My problem that I would appreciate input on: I can do one activity - focused work or walking 3/4 of a mile, and then an hour later, I MUST nap for 3 hours or so. I am hoping this won't continue forever because my MO said I could stay on Enhertu for 2 years with an infusion every 3 weeks.

    I lasted on Xeloda for one year, but the foot/toe pain became too severe. What bothers me the most is that I took a Medication Vacation so we could travel and my feet could heal. My tumor markers jumped in just 2 months of no Xeloda. Even though I felt like a "non-cancer" patient during my Medication Vacation, this showed me that I am only as good as my next medicine.

    Enhertu is my 5th line of treatment. I found the tumor in my breast on 1/1/20. I am de novo and went through Ibrance, Verzinio in 10 months each, had internal bleeding with Affinator, and lasted one year on Xeloda - full dose.

    I am HER2 LOW. My CA 27-29 tumor markers are only at 150, but still, on Xeloda they were down to 50. My MO said that 150 will be my new baseline, and that my markers should start to go down in a few months. She said not to worry.

    I guess what is bothering me emotionally is that I am only as good as my next MBC treatment. It really struck me that I have a terminal disease, and yes, I am grateful for new medicine, but maybe I won't live 15-20 more years. What a bummer! I love my retired life.

    I have six bone mets, none (knock on wood) in my organs.

    Can you give me some advice about the fatigue? Will I start to get used to Enhertu, or is this going to be how I feel?

  • illimae
    illimae Member Posts: 5,739
    edited March 2023

    Hi Francine! Mae here. Sounds like you’re right in the middle of the worst part of the cycle. Many of us have issues in the day 3-10 timeframe. My first infusion was miserable but I felt normal the last week before the next one. Over time SE’s were addressed with meds and also seemed to lighten up on their own. I ended up getting a dose reduction due to the fatigue, which was harder to deal with. Give yourself more time, you’ll find your rhythm.

    FYI, the dose reduction from 5.4 to 4.4 has changed everything for the better and that’s always an option, if things don’t get better soon enough.

  • nopink2019
    nopink2019 Member Posts: 384
    edited March 2023

    woodlands- tough to tell with first dose. I had my fourth last week.MO reduced steroids before chemo infusion. I could certainly tell I was much more tired the next day, on the positive side also less constipated. I took Phillips pills, found them gentle but effective. I too have a difficult time with activities, especially walking uphill or for longer than a half mile. I find a nap in the afternoon necessary, but I also find it is annoying to wake up and feel so out of it. I don't have the magic formula yet. Will have my first scan since taking this drug in a couple of weeks.

  • nkb
    nkb Member Posts: 1,561
    edited March 2023

    woodlands- I needed a major nap with the first infusion- better since then. the first few cycles presented various side effects- the one that hangs on the most for me is the GI- constipation, some reflux etc- I do take a walk every day-

    It is true that we are staying alive due to treatments- hopefully new and easier treatments will be available as time goes by- My Tumor markers have fluctuated a lot on this treatment - this was not true with past treatments- not sure what it means- PET was stable.

  • woodlands
    woodlands Member Posts: 72
    edited April 2023

    Thank you to all who replied. I was able to get Mr. Poopy working again with Metamucil and some stool softener pills.

    I now have a dry cough that I will get checked out on Monday. I plan on having my second Enhertu infusion on Tuesday.

    Today's topic: I am running my had through my naturally curly hair, and hair is coming out. Lots. Not like the time my head hurt on Day 17 after I had an infusion in Jan 2020 when I was misdiagnosed with regular breast cancer. Just hair coming out.

    I know I shouldn't be concerned, especially since after 3 weeks my tumor markers have dropped from 150 to 111! But, how much hair loss can I expect?

    It's always something....

    Feeling happy and blessed to be alive. I am 65 years old. I have definitely had a good run. Hoping for some more years of feeling like me.


  • nopink2019
    nopink2019 Member Posts: 384
    edited April 2023

    I'm sorry to tell you I read hair loss is about 50/50 chance.

  • nkb
    nkb Member Posts: 1,561
    edited April 2023

    Woodlands- my hair started shedding in week two of the second cycle and shedded for about 6 more cycles to really thin. but, oddly enough at cycle 5 it started growing in again. I am about to start cycle 10 and I still wear a hat (can't stand wigs) and by summer at this rate I would be ok with a short hairstyle I think.

    The original study showed 1/3 had grade 1 hair loss- but, as more people take it - it had jumped to at least 50%. I heard a lecture yesterday that said 10-15% had total hair loss. I would call mine grade 2- eyebrows and eyelashes not affected.

  • pnw
    pnw Member Posts: 36
    edited April 2023

    I've had three infusions of Enhertu, the fourth scheduled for this week.

    I'm experiencing noticeable hair loss. My ascites is has kicked back in; two paracentesis since February and I need another one asap, probably this week. At my last clinical appointment the Nurse practitioner suggested I get a blood transfusion as my red blood cell level is so low..I feel 100% terrible all the time.

    Had a CT scan a few days ago and it showed most conditions to be worse than they were in the January CT scan.

    So far, I would say that my condition has worsened overall since I started the Enhertu. May be that this cancer I have cannot be tamed.

    One day they are pumping chemicals into me and other times they are draining stuff out. It's all becoming more than I can handle.

  • nkb
    nkb Member Posts: 1,561
    edited April 2023

    Pnw- I am sorry to hear your news and I hope that it turns around-

    I will say that a blood transfusion will make you feel much better (I have had many ) and that would help with your overall well-being. keep us posted

  • nopink2019
    nopink2019 Member Posts: 384
    edited April 2023

    pnw, I have a scan on Thursday, my first since I began Enhertu. While I do have a very gurgly stomach from the liver mets, my biggest complaint is getting enough oxygen. I'm fine sitting still, but walking even a short distance really gets me. When I'm sitting at home I'm typically using oxygen. I too am nervous about this scan, don't think the drug is doing its magic on me. Let's hope that both of us find better news.

  • goldie0827
    goldie0827 Member Posts: 6,835
    edited April 2023

    Nopink, I have a VERY gurgly stomach, but no liver involvement. I assume it's just gastric.

    I belong to a FB group for Enhertu, and there has been talk lately about the drug (the bag) needing to be covered during infusion and also some kind of filter used and special tubing. Anyone here get this done? It explains on page 5 of the PDF, under administration.

    pp-us-enb-1094_enhertu-mbc-2l-infusion-guide.ashx (enhertuhcp.com)

  • nopink2019
    nopink2019 Member Posts: 384
    edited April 2023

    That bag and filter were applied at my last infusion.

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