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Starting Nerlynx in May, 2019

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  • yesiamadragon
    yesiamadragon Member Posts: 343
    edited December 2020
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    For those of you who started Neratinib after Kadcyla (FNPMom and Morrigan -- and anyone else?):

    How did your discussion with your oncologist go?

    Did you take any break between finishing Kadcyla and starting the Neratinib?

    Anything you wish you had known, or that was the deciding factor for you in choosing to go on the Neratinib?

    I have my last infusion (hopefully ever) of the Kadcyla on the 31st. I have had a bit of a rough go of it AND hope to be able to get the COVID vaccine 3 weeks later (giving a wash-out period for my counts to rebound and side-effects to lessen) so I am thinking of taking a break until I can get the second vaccine. If all goes well, I will be able to get the Moderna vaccine. If it weren't for the chemo I could possibly get it as early as this coming Tuesday! I am so stinking happy there are finally vaccines!

    I have already given my onc a head's up that I will want to talk about Neratinib on the 31st. I would be interested in hearing about people's experiences beyond the diarrhea, as well. I have to admit, I know it is bad, but I have been SO backed up since starting TCHP (yeah, I have to be different) that having something that actually cleans me out sounds good right now!

  • morrigan2575
    morrigan2575 Member Posts: 801
    edited December 2020
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    I'm just getting Cycle 9 of Kadcyla on Monday. I won't be ready for Nerlynx until April. I have seen people in my Kadcyla group that took an 8 week break between Kadcyla and Nerlynx.

    Question on the Vaccine. Why can't you get it now? You mentioned the Chemo will they not give you the vaccine while in active treatment? I'm in NJ and, it looks like I will be in the 1C group which they plan for February-March. Do I have to wait until April or May after I finish Kadcyla?


  • yesiamadragon
    yesiamadragon Member Posts: 343
    edited December 2020
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    It was my choice to wait. I work in Health Care, so would be first round, but I want my counts to bounce back (to be sure i get full benefit of the vaccine) and also since I have been having a harder time with Kadcyla than most people and now is an especially bad time for me to need more time off of work.

    Has your oncologist already told you (or agreed with you) that you will start Nerlynx after Kadcyla?

  • morrigan2575
    morrigan2575 Member Posts: 801
    edited December 2020
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    Nope. When I mentioned it I. February (at start of Chemo) he said we'll talk about it when we get there. I haven't brought it back up since I have 4 months left. I figure I'll bring it up when I get closer (February/March). I don't think he'll try to prevent me getting it if I want it.

    I think the question for me is more do I go straight from Kadcyla to Nerlynx or take a little break?

  • FNPMom
    FNPMom Member Posts: 43
    edited December 2020
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    hello - I was converted from tamoxifen to anastrozole - was on anastrozole for 4 weeks before I started nerlynx - I wanted it - I wasn’t PCR but I had negative nodes negative lymphovascular bed, he was convinced 14 doses of kadcyla was enough but I don’t want any chances that this will be the new standard and I didn’t do it - I have a friend - 11 years NED now - this was prior to neoadjuvant treatment - she had a tumor a little over 2 cm - her onc only wanted to give her 4 cycles of chemo - she fired him and had 6 cycles with the new MO - and now that’s the standard of care - anyway, I’m back on tamoxifen with Lupron - I had a period after 3 months on anastrozole- on 4 tablets of nerlynx- there is diarrhea managed by colestipol- I hope this helps- happy holidays 😊

  • yesiamadragon
    yesiamadragon Member Posts: 343
    edited January 2021
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    Thanks FNP! I finished Kadcyla yesterday (good way to kick 2020 in the backside!) but my onc was on vacation so I didn't get to see her to talk about the Neratinib. Am set up for a video visit with her in a few weeks. Will probably want a couple months off to recover from Kadcyla and get both COVID shots. I delayed my first one until my counts can bounce back some to get maximum benefit, but was assured one will be waiting for me. Then will start Neratinib, I hope. I do not think onc will object. And I know the diarrhea is no joke, but honestly I am so backed up and the usual methods are just not quite enough...

  • FNPMom
    FNPMom Member Posts: 43
    edited January 2021
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    hi guys - do you get really tired on the nerlynx? I did have my Covid 19 vaccine 2 weeks ago but I have just been really fatigued - almost post chemo tired - I didn’t even feel this tired while on kadcyla - I’ll probably increase fluids today and tom, see if it improves how I feel - thank yo

  • hapa
    hapa Member Posts: 613
    edited January 2021
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    I was pretty tired on Nerlynx. I'm still a little tired, which I attribute to AIs, anxiety-induced sleeplessness (which I also attribute to AIs), and getting old. As treatment wore on the exhaustion improved, but I do remember feeling pretty spent at the beginning. IIRC it was not unusual.

  • FNPMom
    FNPMom Member Posts: 43
    edited January 2021
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    thank you Hapa- I called my onc and he had me hold my nerlynx since Friday- I’m seeing him Monday- I also did have blood in my stool and have been having nose bleeding- the nose bleeding is listed as a side effect- I really want to stay on this- we’ll draw labs on Monday is what I’m tol

  • MichalH
    MichalH Member Posts: 1
    edited October 2021
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    Hello everyone, I apologize for interrupting the discussion here, but I dont know where else to go. My mum was diagnosed with lung cancer more 5 years ago and she has had several lines of treatment. At the moment there are not many options left for her. She has exon18 EGFR mutation and there has been a new trial with Nerlynx showing it to be a potentially great drug for my mum. I discussed it with our oncologist and for patients with her mutation there was 100% disease control rate in the trial. Unfortunately, the trial does not have location in our country so we cant get access to the drug. We would like to apply for compassionate use, but I suppose this could be slow process with uncertain outcome. So I would like to ask whether by any chance there are any people with Nerlynx leftover pills (even expired) which they are not going to use and which they could share. Please send me a private message. Thanks a lot in advance !

    On a side note - I am the founder and admin of the Exon 18 support group (can be found on Facebook) . I am quite active on Inspire.com forums where I share my mums full treatment history. I wanted to share the links to the group and to our Inspire profile, but it is not allowed - can share them in a private message. My mum has already been on Afatinib which is a TKI with very similar side effects to Neratinib, so we know very well how to handle them.

  • moderators
    moderators Posts: 8,185
    edited October 2021
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    Dear MichalH,

    We sincerely hope that your mum can get the treatment that is best for her, and that she deserves. Compassionate care is an excellent idea, and we hope that works. These drugs are very regulated, and we strongly doubt that others will be able to - or should-- send you medications as they should be taken under the doctor's watch. We are happy to try to find additional information on the drug /availability.

    Just let us know!

    The Mods