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Starting Nerlynx in May, 2019

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  • DawnS1962
    DawnS1962 Member Posts: 198
    edited June 2019
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    Thank you!🤗🤗🤗

  • Cascadians
    Cascadians Member Posts: 72
    edited June 2019
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    Beesy The Other One, thank you very much for posting pix of those 4 pages from the book about how whole organic soy blocks estrogen and leads to better prevention, eradication, survival and less recurrence.

  • PJ_Seattle
    PJ_Seattle Member Posts: 34
    edited June 2019
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    Hello all! I haven't had a chance to check this for several days, but wanted to send an update

    I have been taking 5 pills per day for a couple of weeks, and things have definitely been better. No D at all, even though I thought my food choices a couple of times would mean trouble! I stopped taking Imodium earlier this week, but still carry it and a lomotil with me everywhere. I am also still being very careful about what I eat, knowing that it can have consequences. I also have some zofran with me at all times, because I have been still experiencing nausea.

    The fatigue is still a huge problem though. I had been experiencing it before I started on this medication, but it has definitely been worse since I started taking Nerlynx. Every day is planned based on what the calendar holds. I feel like an old cell phone battery . . . as soon as I get up in the morning, every thing I do is a drain on my energy. If I do too much early in the day, my battery is drained and I am done. I'm trying to be as active as possible, but I have to pace myself to make it through the day. I hope this starts to ease as time goes on, people just don't understand that fatigue is not just being really tired.

  • PJ_Seattle
    PJ_Seattle Member Posts: 34
    edited June 2019
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    I am wondering if anyone else has been experiencing bloating or a distended abdomen as a side effect? There have been a couple of instances where I have felt that recently. Since I normally don't have that issue I looked up the side effects again . . . sure enough, that is listed as one of them. It's not been a constant thing, but it is uncomfortable.

  • hapa
    hapa Member Posts: 613
    edited June 2019
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    PJ - I think I may have had some bloating when I had my one episode of diarrhea, but not much more than that. Sorry I can't be of more help.

    I'm going to be four weeks in as of tomorrow and still feeling fatigue. My appetite is improving, but I will say that I'm just not all that interested in food still. I haven't had any more D but have had a couple loose BMs with no urgency and still am not taking any loperamide or any other anti-diarrheals. Overall, I think this medication is going quite well for me. I hope the fatigue eases with my increased workout schedule.

    How is everyone else doing?

  • missouricatlady
    missouricatlady Member Posts: 894
    edited June 2019
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    Hello everyone, been reading the posts this morning, after MO mentioned the possibility of neratanib at my appointment yesterday. I am still on HP through November, but asked him what might be next for me. He says the research is not there on this drug, but I am a good candidate (the only candidate to pass through his doors), and he would not be opposed to my trying it if I wanted to. I told him I would look it up on these wonderful community boards. Just know how much your information is appreciated, and I do not recall who said "soupbutt," but I will be smiling about that all day. Laughing Gull, thank you for your invaluable experience, and please continue to keep us posted. It is good to know about the BRAT diet. Best wishes to everyone, have a nice weekend! Lisa

  • PJ_Seattle
    PJ_Seattle Member Posts: 34
    edited June 2019
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    Hapa, thanks for your post. I talked to my MO about it at my most recent appointment and he said it probably is most likely related to the D, which I am sorry to say has come back recently. I didn't have any from the time I was taken off and for the first few weeks of taking the reduced dose, so it was very disappointing to say the least!

    I stopped taking the immodium when I got to the 8 week mark. But now that the D is back my MO wants me to take the immodium every day again for a couple of weeks and taper off after that. I'm also still battling the fatigue and nausea. I have been losing weight, but it is the second-worst diet after the 20-week chemo diet that I did to start my treatment!

  • lilych
    lilych Member Posts: 176
    edited June 2019
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    MissoriCatLady:

    I am curious to know why you are a good candidate for neratanib per your MO. It sounded like you had gotten PCR, correct?

    The article (https://www.ascopost.com/issues/december-10-2018/management-of-her2-positive-breast-cancer/) says "...Neratinib may be 'considered' in high-risk patients, after trastuzumab-based treatment, for patients who did not receive pertuzumab, but there are no data to support its use after trastuzumab/pertuzumab-based treatment..."

  • laughinggull
    laughinggull Member Posts: 516
    edited July 2019
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    Hi ladies -and gentleman,

    I have been away on vacation for like 10 days so I though I would send a quick update.

    Tomorrow I will start my 4th month on Nerlynx. Time goes fast!

    Life is good. I am surprised I don't have any fatigue when so many of you are reporting it. I only had one bout of D during the last month, and one Immodium pill took care of it. PJ, you may not need daily Immodium to take care of your D bout, I am finding that as time goes by I need less and less. If I take one Immodium pill on Monday I dont get any D that week, even eating cherries, the Nerlynx arch-enemy in my experience.

    Hapa how is it going?

  • hapa
    hapa Member Posts: 613
    edited July 2019
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    LG - Its going fine, thanks for asking! I hope you had a great vacation, and hoping you have smooth sailing for the next 9 months until you're done! I saw cherries at Sprouts on Sunday and thought of you, lol!

    Still no real D problems, still tired. I am not sleeping very well for some reason. Kicked DH and the dog out of the bedroom last night and I feel ok today, but boy am I dragging most days. I am over a month myself, and pleased with how easy it has been. The pharmacist said 99% of people have D and it's just a matter of how much. He was surprised at how well I was doing with it, and this is with no changes to my diet. I'm hoping the sleep thing works itself out and takes care of the fatigue. I feel like the sleep problems are just a renewed sensitivity to the AI because I've also been having more hot flashes than usual, but who knows. I went out for Indian food over the weekend and my stomach was again making mild threats the next day but nothing came of it, which is good because we were hiking outside Flagstaff on a fairly busy trail with no bathrooms for miles.

  • laughinggull
    laughinggull Member Posts: 516
    edited July 2019
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    "hiking outside Flagstaff on a fairly busy trail with no bathrooms for miles"...LOL...brave!

    I went for a 1.5h run on Saturday to a place with no bathrooms whatsoever -up until now I was sticking to places where I could do a bathroom stop.

  • PJ_Seattle
    PJ_Seattle Member Posts: 34
    edited July 2019
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    LG, that is my hope! I'm only taking 2 immodiums a day now, one in the morning and one before or during lunch. It seems to be working, no D since Friday and I had a grain bowl with lots of raw veggies for lunch today and am okay hours later. When I eat cherries, I just have to limit how many . . . it is so hard to do though!

    Tomorrow is my last dose of my second 30-day supply. Two down, ten to go!


  • Homemadesalsa
    Homemadesalsa Member Posts: 138
    edited July 2019
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    imageHi all-

    We just got back from a week-long river trip on the Selway River in Central Idaho. Amazing trip, technical whitewater and very remote. On my bucket list for sure. I will admit that I stopped the Nerlynx for the week I was on the river. In a wetsuit and on a boat all day= not time to have bathroom issues, haha. But I will start back tomorrow.

    image

  • laughinggull
    laughinggull Member Posts: 516
    edited July 2019
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    Hi homemadesalsa, you look strong and happy in those pics! Thanks for sharing

  • Homemadesalsa
    Homemadesalsa Member Posts: 138
    edited July 2019
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    Back at 4 a day, even fewer problems than first go-round. So I bought some cherries. So far so good, haha.

  • hapa
    hapa Member Posts: 613
    edited July 2019
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    Wow homemadesalsa, I'm envious! My one misguided attempt at whitewater in a hardshell resulted in more swimming than paddling. My husband was astoundingly unhelpful, thank god for the other kind people on the river that day. Glad the restart is going well for you.

    I'm still doing ok over here, having C instead of D. It defies explanation.

  • laughinggull
    laughinggull Member Posts: 516
    edited July 2019
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    Hi ladies,

    I am one week into my fourth month of Nerlynx. Normal diet (lots of veggies and fruit),no Immodium and...C all the time!

    Weird

  • hapa
    hapa Member Posts: 613
    edited July 2019
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    Well at least I'm not the only one. Sorry LG. Maybe get yourself a bag of cherries?

  • hapa
    hapa Member Posts: 613
    edited July 2019
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    I'm on my seventh week now on Nerlynx. I hope I don't jinx myself by posting this, but I have been relatively regular for about a week now. I did buy some cherries last week, maybe that helped. :)

  • missouricatlady
    missouricatlady Member Posts: 894
    edited July 2019
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    LilyCh - Sorry, I just now read your post, came back for another look after my MO appointment today. I guess I am not sure why my MO recommended this drug, I would have to ask him. He visited with me about it again today at my HP infusion, we are just in the talking and thinking about it phase. He did tell me today that if my lymph node would have been cancerous at surgery, I would have been a candidate for Kadcyla, but since it was not, that is not for me. I will go back and look at everyone's diagnosis and see if I get a clue, or I will ask him in 3 weeks at my next infusion.


    Edited: I found this link: https://nerlynx.com/pdf/fact-sheet.pdf

    NERLYNX is the first HER2-targeted medication approved by the U.S. Food and Drug Administration

    (FDA) as extended adjuvant treatment for early-stage HER2-positive (HER2+) breast cancer, which

    means that it's designed to be taken by patients who have previously been treated with the medicine

    Herceptin ®

    following surgery (i.e., adjuvant trastuzumab-based therapy).

    Who is eligible to take NERLYNX?

    In the United States, physicians can prescribe NERLYNX for patients with early-stage HER2+ breast

    cancer who have received prior trastuzumab-based treatment (adjuvant therapy).
  • beesy_the_other_one
    beesy_the_other_one Member Posts: 170
    edited July 2019
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    Missouri,

    My suspicion is that your doctor may be wanting you to take Nerlynx because of your tumor being PR-. If he doesn't specify why he's wanting you to take it, I'd ask directly if the progesterone negative status is what's making him suggest you try it. I finish Herceptin in September and then plan to start Nerlynx . . . and hope I can do as well as most of the ladies on this thread!

    ~Beesy

  • missouricatlady
    missouricatlady Member Posts: 894
    edited July 2019
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    Beesy, I think you may be right. I had asked him what PR- meant, and he told me this: " If a patient is ER + but PR - their prognosis is slightly worse than if ER + and PR +. But in today's world with current therapies, from a therapy standpoint it does not change things. If ER positive then a ER blocking agent. If her2 positive then her2 blocking agents. Hope that helps!" Thank you for your thoughts on that. I hope you do well on Nerlynx, and please keep us posted. I finished radiation on Friday and have more thoughts now about what is next. Live each day to the fullest is my thought.

  • lilych
    lilych Member Posts: 176
    edited July 2019
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    MissouriCatLady and Bessy_The_Other_One: Thanks very much for the info and best of luck for taking Nerlynx. My wife had the last HP two weeks ago and the MO suggested to not think about the possibility of having Nerlynx until we see her next time in late September.

  • hapa
    hapa Member Posts: 613
    edited July 2019
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    Hi all, just checking in to report another normal week on Nerlynx. Hopefully I'm through the shitty induction period (pun intended) and it's all smooth sailing from here!

  • laughinggull
    laughinggull Member Posts: 516
    edited July 2019
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    Hi ladies,

    Just checking in. Almost finished with my 4th Nerlynx cycle. Life is totally normal. Tummy issues under control. I was in Mexico for work almost an entire week, eating all sorts of spicy-greasy-heavy stuff and had no issues, other than gaining weight Happy

    A couple of weeks ago, I had muscle cramps at night, for like a couple of weeks, very painful. I was working out regularly (but I also used to do that pre-cancer, was never too careful about stretching and never had night cramps); they seemed to have subsided by stretching more. Is this a Nerlynx thing? Or does it sound like an AI thing?

    Best to all,

    LaughingGull


  • hapa
    hapa Member Posts: 613
    edited July 2019
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    LG - I think that's an AI thing. I get them occasionally too, usually in my feet or calves. Wearing athletic compression socks seems to help. I'm glad to hear you're also doing well!

  • PJ_Seattle
    PJ_Seattle Member Posts: 34
    edited July 2019
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    LG - I had incredibly painful leg/feet cramps for the first month or two after I started taking Tamoxifen. I had leg cramps in places where I never thought they were possible! I hope yours are short-lived.

    Hapa - congrats on your normal week! I hope they continue.

    I am about to finish up my third 30-day supply. I'm still taking 5/day, and for the most part am feeling pretty good with the exception of the continuing fatigue. I have nausea on occasion, so am still carrying around the zofran with my immodium, which I only take every few days or so now. I'm learning that I need to eat a couple of times in the 4 hours or so after I take the medication. I tend to get the nausea if I don't do this, so I am trying to make it a habit. Hopefully things will continue to improve and I will have a normal week soon too!

  • laughinggull
    laughinggull Member Posts: 516
    edited July 2019
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    ThumbsUp

    Doing well PJ, here is to a normal week soon soon soon

  • Homemadesalsa
    Homemadesalsa Member Posts: 138
    edited July 2019
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    image

    No news is good news, eh? Big mountain bike race coming up Saturday, woo hoo!

  • laughinggull
    laughinggull Member Posts: 516
    edited July 2019
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    Great to hear from you, homemadesalsa! I have a swim race on Saturday. Lets post pix on Sunday!