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Enhertu start

guin8
guin8 Member Posts: 9

Hi everyone, I'm starting a low dose of Enhertu today, been resisting for a while as I'm more than done with hair loss and any more reduction in quality of life. Side effects don't seem to be consistent with most patients I've observed from research, am very trepidatious. Any thoughts?


Thanks

Comments

  • moderators
    moderators Posts: 7,884

    Hi @guin8 ,

    You're sure to get some responses here, but also wanted to point you to the Enhertu for Stage IV thread, where others share their experiences.

    From what we hear from most folks on this medication, the side effects can be a little difficult at first (commonly nausea), but they seem to get better the longer you're on the regimen. Wishing you good luck as you get started!

    Please keep us all posted on how you're doing. We're here for you!

    —The Mods

  • guin8
    guin8 Member Posts: 9

    Great thanks so much

  • eulalia21
    eulalia21 Member Posts: 9

    Hello. My mom is beginning with Enhertu due to leptomeningeal finding. We will like to know which reactions should we expect at the beginning of the treatment. Any experiences, comments or suggestions are really appreciated.


    Thanks

  • julinha
    julinha Member Posts: 1

    Hello ladies and welcome….

    I have had 13 infusions of Enhertu now (and overall I am finding it easier to tolerate than previous therapies, including Capecitabine. My hair has thinned a lot but strangely enough even though I am still on the drug there are signs of re-growth. Weird !!

    Nausea is one thing that is not an issue with me but you need to be sure to drink at least 1.5 litres of water to keep well hydrated and I find it easier to drink it warm with slices of root ginger which is also anti nausea. Yes the first week I feel tired but this passes…..

    I also have peripheral neuropathy which is common with many treatments, blurred vision from time to time and tinnitus, but hey, I can live with that as it is having a positive response…

    Hope this helps…

  • judys4444
    judys4444 Member Posts: 1

    I start on Enhertu the New Year (have a happy one). Am nervous as I have failed 3 oral treatments (Verzenio, Ibrance & Xeloda. 1st & 3rd - terrible SEs, Ibrance after 23 mths. had progression. I already have neuropathy, tinnitus (terrible for years), and thinning hair. I am older, have a wonderful partner & he is older & helps me w/so much.

    We rescued our adorable 11 yo yorkie (my 7th yorkie) and she keeps us laughing, cleaning up (loves to dig in backyard), and more active. Any suggestions to make life easier. Does everyone have a port? My veins are shot bc back surgery in July (had to clean out some cancer in spinal column - T6 especially). still not fully recovered & in PT 2xwk.

    very nervous bc of age. do not want to lose any more weight.

  • pirate_girl
    pirate_girl Member Posts: 31

    Responding to judys4444 - I got a port when I switched to Enhertu (everything up to that point had been pills or injection) - my veins are fine, but using a port keeps them that way. I have seen too many folks at my MO's treatement room who waited too long to get a port. It was a relatively simple procedure, and I am glad I did it. Whatever treatments are down the road for me will likely need to use the port so I'm ready. I have had 19 infusions of Enhertu, but I am currently on a pause because of treatment-induced pneumonitis — waiting to see if it resolves so that I can resume or whether I need to move on to next option, whatever that may be. I have not had any significant issues w/ Enhertu (except now with the pneumonitis) — some fatigue, but had that already with other treatments; hair thinning but still have some hair, including some re-growth. No signigificant weight loss or gain — lost weight with an earlier treatment (everolimus? I think), but am fairly stable with Enhertu. As we all know, everyone responds differently to these treatments, but I have found Enhertu pretty manageable.

  • guin8
    guin8 Member Posts: 9

    Thanks for the helpful responses. I had my first infusion last October and had to stop for a while as I had an unrelated gallbladder issue that required immediate surgery and long recovery. Tried again yesterday, low dose, a little vomitting but did try a small piece of pizza and had a maybe too fruity (ie, acidic) smoothie. On a pill combo that should control vomiting, just hoping it's something that get better with time.