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Starting Nerlynx in May, 2019

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  • leftfootforward
    leftfootforward Member Posts: 1,396
    edited February 2020
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    Shetland- that is a thing to do. I apologize. I hope they let you lower the dose. I’m only in 4/day as I take it with TDM1 and that is how the trial doses the drugs together.

    The drug has done wonders for me in just 6 weeks in terms of my brain Mets so o

    I hope you find a dose that allows you to reap the rewards and to be able to live your life.,


    thinkibg of you.

  • ShetlandPony
    ShetlandPony Member Posts: 3,063
    edited February 2020
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    Apologies Left foot? No need! If you detect that I’m getting mad, yes I’m getting mad at the trial people who seem to care about their protocol more than they care about me.

  • beesy_the_other_one
    beesy_the_other_one Member Posts: 170
    edited February 2020
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    We are all angry with you, Shetland. You are so right that they care more about their protocol than they care about you. They don't even respond when you explain you're not able to eat?

  • frmthahart
    frmthahart Member Posts: 59
    edited February 2020
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    I am not MBC nor am I in a trial for my Nerlynx - So, I don't presume to tell anyone what to do. However, I can tell you what has been working for me and making life ok again. When I started, on 3 pills- instead of the 4 my MO wanted -because the specialty pharmacist and the Puma RN told me not to even start till I had at least 2 options for the D, the D arrived quickly and was relentless. I had to take a break. When I started again, I had colestipol, loperamide and lomotil to use. I also use a digestive enzyme and take my nerlynx with a serving of Greek yogurt (probiotic). It has made all the difference in being able to actually do something other than live on the toilet and I DO have an appetite. There is a careful balance of when to take all the pills during the day.... for example, I take my colestipol at 2 pm and my Nerlynx around 6:30 with at least the yogurt. I am up to 5 pills now and will be moving to 6 soon. I also take the zofran. I can't stand nausea!

    I hope the trial folks give you options that will enable you to find a balance with the SE's and pills!

  • leftfootforward
    leftfootforward Member Posts: 1,396
    edited February 2020
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    no I’m right in line with you Shetland angry with the trial people. I try to remember they have protocols but it sure doesn’t feel grate. i likened it to being a mouse in a maze- no choices and being watched.


    I’m sorry you feel bad and they aren’t responding to your concerns. I hope it turns around soon.


    hug

  • PJ_Seattle
    PJ_Seattle Member Posts: 34
    edited February 2020
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    Shetland - I'm so sorry that you are miserable. I remember my first miserable month. It's impossible to tell what exactly is making you feel sick when you are taking so much and so many different things. Lomotil worked better for me, and cholestipol has helped a lot since I started taking it. I know that a lot of women in the FB group have had success with it as well.

    If you weren't in a trial and having that much D, your MO would have put you on a break and/or reduced your dose by now. So, you have every right to be angry!

  • ShetlandPony
    ShetlandPony Member Posts: 3,063
    edited February 2020
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    Thank you, friends, for the sympathy and advice. I do have choices, and my first duty is to take care of myself. I told the nurse today I will not take any neratinib today. I looked up the guidelines on the Nerlynx web site. My diarrhea is at least grade 2, maybe grade 3. At 5 or more days of grade two the neratinib is supposed to be interrupted, and not resumed until it goes to grade 0-1. If that takes less than a week, resume at same dose. If that takes more than a week, reduce the dose. So I should already have been taken off it. I think they should have been checking on me every day, even if the study protocol only said the first three days. I am telling you, I will not resume at the same dose. How many days can a person go without eating? Today I have managed half a cracker, half a banana, and some electrolyte drink. And I threw up. Ok, done venting.

    No, not quite done. Why do I have to talk to the trial nurse and then she talks to my onc?

  • BevJen
    BevJen Member Posts: 2,341
    edited February 2020
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    SP,

    I have been reading your posts regarding the trial. I am so sorry that you are going through this. Good for you for refusing to take the drug yesterday. Can you bypass the nurse and get your onc to talk to you on the phone at least? perhaps if she realizes that you cannot take the full dose, she will step in.

    Hope today is a bit better and that you might be able to eat something and feel a bit better.


  • hapa
    hapa Member Posts: 613
    edited February 2020
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    Shetland - sorry, your situation really sucks. I second BevJen, time to get your MO involved.

  • ShetlandPony
    ShetlandPony Member Posts: 3,063
    edited February 2020
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    I sent her an email saying we need to talk.

  • ShetlandPony
    ShetlandPony Member Posts: 3,063
    edited February 2020
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    Many thanks to Leftfoot who pm’d me to say how concerned she was and encouraged me to go to the ER for fluids and electrolytes. Leftfoot, it was you who finally convinced me. I am there now.

  • leftfootforward
    leftfootforward Member Posts: 1,396
    edited February 2020
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    I hope they take care of you soon snd fluids and meds help you feel even a bit better. My ER husband is pulling for you as well.

    Take care my friend.

  • frmthahart
    frmthahart Member Posts: 59
    edited February 2020
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    Way to go LeftFoot! Thanks for being the voice Shetland needed!!!

    So glad to know you are getting the care you need Shetland!

  • ShetlandPony
    ShetlandPony Member Posts: 3,063
    edited February 2020
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    I feel much better having gotten the fluids. It perked me up immediately. I am eating a lot to make up for not eating for a week.

    Still waiting to hear from my onc; not sure what is going on there. Feeling like nobody has been properly looking out for me on this trial. Earlier in the day that I went to the ER, I talked to the trial nurse. She asked if I would resume Nerlynx that day. I told her no, not without talking to my onc. Can you believe she even asked that? And she still did not figure out how bad off I was. It was an urgent care nurse on the phone who did that, having my DH check my pulse and blood pressure lying, sitting, and standing.

    I want to walk away but I ought to give this drug combo another chance. I mean, LFF, you are taking four per day and it is working. (Thank goodness!) And there are PJ and Hart having success with different drugs for the SE. I would like to try the dose escalation method to get back on. Not sure if it is allowed.

  • leftfootforward
    leftfootforward Member Posts: 1,396
    edited February 2020
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    glad you are feeling better Shetland. I think there is a way for you to stay on this drug but I agree the trial team an you MO need to get on the same page as you. I know of several people who have made adjustments and done well. I hope they get back to you soon.

    Do you know of the FB support group. I can get that info to you as well.

  • beesy_the_other_one
    beesy_the_other_one Member Posts: 170
    edited February 2020
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    Shetland! Thank you for taking the time to update us. No, I cannot believe the nurse asked you if you would be continuing Nerlynx when you had been to the ER earlier in the day.

    I'm grateful for LFF encouraging you to go for fluids. As much as I've read and experienced with this drug, it's never gotten to that point, or even close, but I've never gotten to six pills, either, despite many tries. I just didn't put it together, but the next time I read of a woman barely eating a cracker, I'll know what to suggest. Lesson learned.

    We are rooting for you.


  • ShetlandPony
    ShetlandPony Member Posts: 3,063
    edited February 2020
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    Beesy, she, the trial nurse, asked me that some hours before I found out I needed to go to the ER, the day after I explained the guidelines to her that said my grade 2/3 diarrhea needed to resolve to 0-1 before I re-started. Yeah, I was too queasy to eat or drink enough. I learned things, and now I hope I will recognize what its happening much sooner if I start going that way again. Interesting to hear you never could get to six pills. I told my good nurse, my onc nurse, earlier today that I will not resume with six pills.

  • hapa
    hapa Member Posts: 613
    edited February 2020
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    Shetland - glad you are feeling better. I also did not realize that eating a cracker was a huge red flag, but then I have never gotten to that point. I'm glad one of our BCO sisters recognized it and you were able to get the help you needed. Are you going to see your onc about this still? Do you know if you will be allowed to continue with the trial if you don't go back to six pills?

  • PJ_Seattle
    PJ_Seattle Member Posts: 34
    edited February 2020
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    Shetland - I'm so glad you put yourself on a break, and got some fluids. I haven't had to receive them during Nerlynx, although there was one point early on when I probably should have. I did have to have hydration and an emergency phosphate infusion during chemo when I wasn't eating for days at a time or only managing a saltine or two. I also ended up with very low potassium levels.

    Have you been able to chat with your MO?

  • ShetlandPony
    ShetlandPony Member Posts: 3,063
    edited February 2020
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    I have an update, my friends. My onc called. She has been sick. She is moving me to a different trial nurse. And she says yes, I can go back on using a gradual dose escalation. She gave me to understand that the rules are not set in stone because the main thing is to show efficacy. So I guess they would rather adapt than have people quit, right? It seems my situation was not typical. But you know, I always tell them, I am a lightweight and if you give me a standard adult dose of anything there is good chance you will be overdosing me.

  • leftfootforward
    leftfootforward Member Posts: 1,396
    edited February 2020
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    that’s great news Shetland. Way to advocate for yourself. Glad things look to be getting set straight.

  • beesy_the_other_one
    beesy_the_other_one Member Posts: 170
    edited February 2020
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    Shetland, I have been checking for a post from you, so thank you for the update! You are NOT a lightweight and sadly, your situation is all too typical. Like most ladies on here, I took every drug and treatment prescribed and this one has been the most complicated.

    It sounds to me like you have been caught in a rules game (thou must take six) that will not happen with those in the future because even since I've been reading about Nerlynx they've realized that efficacy is not as firmly related to a 240 mg dose. There was no titration of dosing when I first starting reading about it when it was first approved by the FDA. I am not in a trial but am frequently contacted by the specialty pharmacy, as if I am in a trial. Sure, they know what's toxic, but they need to figure out what works and what you can LIVE with.

    So happy they are going to work with you going forward, and thrilled you are feeling better!

  • hapa
    hapa Member Posts: 613
    edited February 2020
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    Shetland - this is such a relief! I hope your restart goes better. When I started on Nerlynx, I was told that most people start having issues at 5 pills/day. I'm not sure what was meant by "issues" but I would guess they meant grade 3+ side effects. Just fyi. I have no idea why anyone would want to start a patient at six pills a day anymore. It seems unnecessary and harsh.

  • PJ_Seattle
    PJ_Seattle Member Posts: 34
    edited February 2020
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    Shetland - thanks for the update! I'm so glad they are going to start at a smaller dose and escalate up. Like hapa said, it just doesn't make sense to start at 6. When I started, there was no talk of doing anything other than starting at a full dose, even though both my MO and I didn't think I would get through this unscathed because of how treatment has gone for me. It was only months later that I saw somewhere that the manufacturer started recommending ramping up, and it seems to go better for the women that have started that way.

  • frmthahart
    frmthahart Member Posts: 59
    edited February 2020
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    Shetland - I am glad you can restart at a lower dose! I was super anxious about starting again after my 2 week break, but I found the restart was very smooth and the SE's seemed less severe. I have been able to move up from 3 to 5 without much issue. I hope you experience the same!!

  • Homemadesalsa
    Homemadesalsa Member Posts: 138
    edited March 2020
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    Hey ladies- just thought I'd drop in after filling my Nerlynx scrip via CVS online for the FINAL time! Woo hoo! I'm getting my knee replaced in April, and my MO doesn't see any reason to continue during and after that procedure since it will be close enough to my year.

    At this point I don't even think about it except in the morning when I take it and other meds. No side effects since maybe June or July. I eat what I want, salad included. Huge relief. I was almost NOT going to take it but with the advent of the Colestipol, the risks went down. But maybe now I'll have slightly less fatigue, less fear of cherries (thanks for that, Laughing Gull).

    Hope all your journeys are as smooth as this one turned out to be!

  • beesy_the_other_one
    beesy_the_other_one Member Posts: 170
    edited March 2020
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    Homemade, all I can say is congrats! You've been an encouragement to us all along the way--thank you.

    Eat cherries with abandon this summer, and enjoy every last one.

  • morrigan2575
    morrigan2575 Member Posts: 801
    edited March 2020
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    Congratulations Homemade!

  • caiti2067
    caiti2067 Member Posts: 10
    edited March 2020
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    I'm on day 20 of Nerlynx. I eat a very high fiber diet, tons of fruit, vegetables especially leafy greens, beans, lentils, and whole grains, so I was expecting big problems with diarrhea but so far I have hardly had any. I can't seem to take any imodium without getting immediately constipated- I tried to take it at the start because the doctor's office said to take 6 per day at first, but I would be solid waste matter by now if I had done that. I did get queasy on day 6 and 7, took a few anti nausea pills, and on days 7-8 I felt I had the flu, really miserable and achy all over including nausea and diarrhea. Now I'm back to just mild queasiness once in a while. I've had a couple of stomach aches. I've had some annoying mouth sores, and more overall fatigue although the fatigue could also be from the AI and life in general. I thought I was looking a little yellow for a few days, but it could have been my imagination. We'll see what the next blood test shows. So far overall, pretty manageable.

    Thanks to everyone who contributed to this and the other Nerlynx thread to have an idea of what to expect and make it less scary. Oh and I started at full dosage, 6 pills, but I am 150 lb / 5'11" - being large may have made it easier.

    Other things - they offered a copay assistance which brought copay from $120 to $20. They also included a voucher for a free 3 month supply of anti diarrheal in the intro package.

  • hapa
    hapa Member Posts: 613
    edited March 2020
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    Caiti - my experience was very similar to yours. Doing quite well with this stuff now. Maybe a little fatigue and insomnia, but I don't know if I can pin that on the Nerlynx.