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Starting Nerlynx in May, 2019

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  • laughinggull
    laughinggull Member Posts: 517
    edited November 2019
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    hapa, I also follow closely your Nerlynx connundrums, very interesting

    I am here to announce that I DID AGAIN. Either Monday or Tuesday, I took a double dose, this time without any side effects whatsoever!

  • beesy_the_other_one
    beesy_the_other_one Member Posts: 170
    edited November 2019
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    LG, I am so impressed that you double dosed with no ramifications--so impressed.

    I signed on to report to you ladies that after suddenly starting to feel better after a mere SIXTEEN WEEKS, and I mean suddenly, now, days later I appear to be constipated. Yes, you read that right. I had diarrhea for sixteen weeks, taking up to eight Imodium daily. This week I suddenly started feeling myself (appetite back and just feel better) and days later, it appears everything has stopped. Mind you, I don't tend to be someone who feels like I have to share about my bowels, but I thought my Nerlynx friends would be able to laugh with me on this--and appreciate the irony. I haven't taken Magnesium in four months but I guess I'll have to take it tonight!


  • PJ_Seattle
    PJ_Seattle Member Posts: 34
    edited November 2019
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    LG and hapa, double-dosing! The thought gives me anxiety beyond belief!

    hapa - good luck with the insurance change! I'm really lucky in that my insurance covered it fully minus a $30/copay per month, until I reached my OOP max, since then no copay. I've been too chicken to even think about making a change during treatment, so I admire your ability to do so!

    Beesy - congrats on feeling better, but sorry to hear that you are now experiencing C. On your recommendation, I did end up joining the FB group. It's been illuminating to see how some of the random things that have been happening to me are also happening to others and I've wondered often, "what is this medication doing to us?" I've started doing a few things differently after learning about the need for an acidic stomach after taking and am also considering switching from taking it in the morning to taking it in the evening because that seems to help some of the group members. (Unrelated, I also working at an engineering firm - doing roadway design)

    I'm still dealing with regular D again these days, that I can't seem to tie to anything because what I eat doesn't seem to be a factor. I can eat a salad with no trouble, but then the next day I'm having issues after eating a bagel in the morning with my pills, even though I do that every day! I'm working with a pharmacist again, so hopefully that will help. I'm going out of town for a few days on Wednesday for the holiday, and I do not want to take these pills with me. I am thinking that I might benefit from a few days off at this point, and it would only be three doses.

    Informal poll to all: At what time of the day do you take Nerlynx?

  • beesy_the_other_one
    beesy_the_other_one Member Posts: 170
    edited November 2019
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    PJ,

    I saw my MO for the first time since starting Nerlynx this past Tuesday. He told me that had I been in the trial, they would have dropped me to three pills already because of the amount of diarrhea I was having. He convinced me to give my body a break and try to restart in December sometime, which comes at a good time since my daughter is getting married next Saturday. I took Nerlynx Tuesday and have been off since--I'd forgotten what "normal" felt like! His most convincing argument was that he's had many patients have equal amounts of trouble with Nerlynx take a break and when they re-start, they do better, for reasons that are unclear. That sold me. My appetite is back, vegetables sound great to me for the first time in four months and while it took a few days, no D!

    Regarding the FB group and interesting info, I've been having pain (and I am talking pain) in my thumbs for months. One lady posted asking if anyone had thumb/wrist pain, and I was shocked at the numbers of women who piped up and who had associated it with the Nerlynx. I was in disbelief, but guess what's gone? Yep, the pain in my thumbs. I know that story sounds ridiculous, but I'm not kidding.

    I take Nerlynx in the morning, to answer your question. PJ, the other thing my MO told me (again) is Nerlynx is cumulative. You won't lose ground taking a break. He also said taking some (lower doses) is better than taking none. I asked whether he thought I might have more HER2+ receptors in my intestines and he said it's possible--they just really don't know why it affects some so badly and others do fine as long as they don't overdo the cherries. Some heroines can even double their doses and not suffer! #lifegoals


  • hapa
    hapa Member Posts: 613
    edited November 2019
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    I also take Nerlynx in the morning, because I know myself and I know that if I don't take it then I won't remember to take it at all. So even if I haven't eaten any breakfast, I gulp down those pills. I do always drink some coffee with soy milk, so hopefully that gets some acid churning in there. Since I read that article about needing an acidic environment to dissolve, I bought some OJ, but I haven't been good about drinking it on days I don't eat anything. Baby steps, baby steps.

    My guess on why some people can take a break and restart with fewer issues is that the terrible D when you start really thins out your gut flora and it never quite gets a chance to recover. The break stops the D long enough for your gut flora to regenerate itself. Once it has regenerated, it can help you digest your food, and then when you start taking the pills again you have help with digestion, so even though the Nerlynx is still stressing your intestinal cells, you have less D. I think if you are a person who normally eats things like salads and cherries and beans, the BRAT diet may not be helpful as it is not feeding the microbes that feed on the things you normally eat, so you starve them out and when you want to eat normally again, you can't. That is my completely made up, non-medical, uneducated guess; perhaps I will start a you tube channel and write a book about it (kidding).

  • PJ_Seattle
    PJ_Seattle Member Posts: 34
    edited November 2019
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    Beesy - agreed about the FB group! I have been getting muscle cramps in new and bizarre locations (mid-back & rib cage just below breast), and saw a post about getting cramps in weird places and women mentioning that they get them in the same exact spots. I'm glad you are on a break for your daughter's wedding and feeling so much better! I'm sure you will have a much better time not having to worry about SEs.

    hapa - I think you are on to something regarding the gut flora. I was doing pretty good taking probiotics after chemo when I knew that all my gut bacteria was gone, or mostly gone. I heard from the FB group that the manufacturer is now recommending probiotics while on this, but I've been hesitant to add them when I'm in a period of GI distress. Yogurt has not sounded good to me, but I did buy some "shots" from Whole Foods.

    I see my MO next in December, but have a follow-up phone call with the oncology pharmacist on Tuesday. I had been having D only about every two weeks or so, until mid-October, which is why I've been meeting with the pharmacist. I've had to take 4 lomotils so far today, and I know now for certain that I am going on a break this week. I want to be able to enjoy time with my family, and not be consumed with all this. I feel like too much of my day is taken up on dealing with this and how I feel because of it. But, I'm finishing up month 7 soon, and have every intention to finish my year.

  • hapa
    hapa Member Posts: 613
    edited December 2019
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    I almost don't want to post this for fear of jinxing myself, but the mouth sores seem to have stopped. I had one for a while that must have gotten into or pressed against my trigeminal nerve and OMFG that was miserable. But shortly after that one went away, I stopped getting them completely.

    I was put on Nerlynx break on Monday due to my fat grafting surgery tomorrow. I'm not sure why except that my PS talked to my MO and then a nurse called me super early on Monday morning to tell me to stop taking it, and restart 2-3 weeks after surgery. So far I feel no different.

  • laughinggull
    laughinggull Member Posts: 517
    edited December 2019
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    Hi hapa,

    Great news about the mouth sores since they are so annoying. You must be so excited about the surgery.

    I am finishing my ninth month on Nerlynx, and at this point I have zero side effects. No D, rather C most of the time -which I blame on the calcium supplements I am taking. No digestive issues of any kind, no fatigue, life is normal.

    Wishing everybody the best for the new year.

    LaughingGull

  • hapa
    hapa Member Posts: 613
    edited December 2019
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    My fat grafting surgery was a bust, no pun intended. They only harvested 30ccs of fat off of me. What the actual fuck? If i had known it would be that sparse I never would have bothered.

  • PJ_Seattle
    PJ_Seattle Member Posts: 34
    edited January 2020
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    Happy new year!

    hapa- that is great news about the mouth sores! They sound awful. Sorry about the graft surgery. How are you feeling now? I hope at least you have been able to get some SE relief on your break from Nerlynx.

    I am one month behind LG, finishing up month 8 in a few days. I ended up taking a four day break so I could travel for Thanksgiving, and felt so much better. When I started back on it, I started taking it at night. I also started taking cholestipol, which seems to be helping with the D. The fatigue is still pretty bad, and I still have nausea/appetite issues.

    I hadn't considered taking another break at Christmas, but I had several days of nausea the week before and decided to after my oncologist said that it would be okay. And, I'm glad I did! It was four days again, and I was able to go out for Chinese food on Christmas eve! And eat salads!

    So, I am using the memory of how much better I felt to keep me going until April. I'm almost 2/3 done!

  • laughinggull
    laughinggull Member Posts: 517
    edited January 2020
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    Hi pjseattle, happy new year to you, too. I am sorry to hear you still have side effects almost 9 months in. But you are almost there, dear.

    In my case I kind of turned a corner at the 5 or 6 months mark and I don´t even notice I am on this medication. I can take it with or without food, I have double-dosed a few times and never have any side effects anymore.

  • hapa
    hapa Member Posts: 613
    edited January 2020
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    I have noticed no difference being off of the Nerlynx for about a week and a half now. I wasn't having any issues before and I'm still not.

  • PJ_Seattle
    PJ_Seattle Member Posts: 34
    edited January 2020
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    LG- thanks. I keep having to remind myself that I am getting closer and closer to being finished. I definitely have periods when I feel pretty low because of the persistence of the side effects after all this time. It's hard not feeling great and having to say 'no' to things. But, I'm determined to finish my year!


  • beesy_the_other_one
    beesy_the_other_one Member Posts: 170
    edited January 2020
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    Good morning, ladies!

    I enjoyed my six week break from Nerlynx--very much--but I'm back on it as of January 1. PJ, maybe you need more of a break to let your body re-set and normalize? Since my MO insisted I take the break, I've read of many women who took a longer break and when they re-started, they did much better the second time, so I'm hopeful--at least hoping to be able to eat a good variety of foods and not be repulsed by vegetables, as happened last time (so odd). Regardless, I plan to finish the last eight months, diarrhea or not. Reading about how it takes women riddled with brain mets to NED is just the motivation I need.

    hapa, I was just re-reading your "completely made up, non-medical, uneducated guess" about the gut flora above and I believe you are on to something and should start that YouTube channel. If nothing else, you would keep us all laughing. Before I even saw who started the thread, "The Itty Bitty Titty Committee," I had a feeling it was you. I'm sorry your fat grafting was a bust.

    Back to gut flora: I am taking a soil based probiotic this go round in hopes it will help. LaughingGull--only three months to go!


  • missouricatlady
    missouricatlady Member Posts: 894
    edited January 2020
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    I am finishing up HP and have to make a decision about neratinib. I was reading this article: https://www.jmcp.org/doi/pdf/10.18553/jmcp.2019.25...

    Trying to figure out the recurrence rate with the drug versus without it. Would anyone know the answer to that please? I clipped a small part of the article below. Thank you and best wishes to you, Lisa

    image

  • hapa
    hapa Member Posts: 613
    edited January 2020
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    Here is some additional data on Nerlynx that LG turned me on to and I found it interesting:

    https://www.pumabiotechnology.com/docs/120618_Puma_ExteNET_Poster_at_SABCS_2018.pdf

    It's not "statistically sound" because the original study was not powered to look at HR+ status or PCR vs. no PCR, and some of these analyses showed the difference to not be statistically significant, but as a person with a pretty decent background in statistics..eh, I would have preferred cleaner data but this is what we have and I do think it's worth taking into account. I had very minor problems with this drug, if I were suffering through it I might have quit, but I see no reason to not give it a shot and see how it treats you.

    There is no data on overall survival yet. From what I understand, which mind you isn't much and may not be accurate, they need enough "events" to occur to calculate any overall survival benefit/deficit. Which means they need enough people to die. So I assume not enough people from this study have died yet for them to calculate that. I think that is becoming a common problem even on stage IV studies, especially for Her2+ populations, which is why the FDA has been approving drugs based on things like DFS (for early stage studies) and/or PFS (for stage IV studies). I also believe that if ever overall survival appears to be worse in the treatment leg of a study, the FDA will pull the drug without waiting for the study to accrue enough survival events, and since that hasn't happened with Nerlynx, I would assume OS is as good or better in the treatment population of this study. But of course the FDA being a government organization is subject to lobbying, so...

  • missouricatlady
    missouricatlady Member Posts: 894
    edited January 2020
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    Hapa, thank you very much!! Going to sit down with my husband tonight and come to a decision. I appreciate your thoughts so very much, thank you!

  • laughinggull
    laughinggull Member Posts: 517
    edited January 2020
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    MissouriCatLady, I am also not sure if the FDA approval was only for patients with residual disease after neoadjuvant treatment, meaning your insurance may not approve it since you had a complete response....your prognosis is excellent, as if you had never had cancer in the first place...you need to look into that

  • missouricatlady
    missouricatlady Member Posts: 894
    edited January 2020
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    I wondered about that, thank you so much! I will check with H/R just to see... thank you!

  • beesy_the_other_one
    beesy_the_other_one Member Posts: 170
    edited January 2020
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    I had a complete response and my insurance approved it, no questions asked. Missouri, reading your stats, the reason I would lean toward trying it is your progesterone negativity, but that's free advice and worth everything you're paying for it.

    I chose to take it for these reasons:

    • At my biopsy, my tumor measured 1.5 x 1 x 1 cm. FIFTEEN DAYS LATER, it measured 7 x 2 x 3.4 cm--suddenly I qualified for every treatment. MD Anderson believed that it never got out of the breast, but do they really know? I am not as confident as they are.
    • Nerlynx crosses the blood brain barrier, the only drug I will have taken that does so. HER2+ tumors like to go to the brain.


  • missouricatlady
    missouricatlady Member Posts: 894
    edited January 2020
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    Very interesting to know, Beesy, you may have changed my mind. I've had diarrhea for sooooo long. Sigh. I take magnesium for leg cramps and have never been sure if it is the Perjeta or magnesium causing the D. Dr told me I could probably quit the magnesium after the Perjeta, but I think it is the AI that is causing the leg cramps and the magnesium helps with that.

    Going to have a talk with the husband tonight. Might as well try it, I suppose. I've managed to cross over into 2020 with my dang deductible, that is probably something that may never end. Cancer costs a lot of money. HER2+ and the brain and the blood brain barrier, all things I've read on here. Thank you! Best wishes to you, Lisa

  • hapa
    hapa Member Posts: 613
    edited January 2020
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    So my insurance company, or employer, or whoever makes these decisions, decided to switch pharmacy benefit managers this year. I just looked up how much my insurance is paying for my Nerlynx now and it's only ~$4500/month.

  • missouricatlady
    missouricatlady Member Posts: 894
    edited January 2020
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    My insurance covers it, my co-pay is $180 a month. Ugh. Still thinking on it. Finished HP yesterday, doctor said he wouldn't start me for a month anyway. Different than paying for HP, which my out of pocket covered finally, I would be paying the $180.

  • hapa
    hapa Member Posts: 613
    edited January 2020
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    Get the Nerlynx patient assistance card, copay will be $10/month. You qualify as long as you're not on medicare or medicaid. And maybe Tricare, I don't know about that one. But if you have private insurance, this stuff is $10/month. Puma doesn't want your $180/month to come between them and the thousands that your insurance company will pay, so they pay most of it for you.

    I just looked up my insurance info and it seems that maybe Nerlynx patient assistance paid my whole deductible? Plus a good chunk of my out of pocket? Did I just stick it to the man? Oh god, I hope I just stuck it to the man!

  • missouricatlady
    missouricatlady Member Posts: 894
    edited January 2020
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    Thank you, wow. Isn't that nice?

  • beesy_the_other_one
    beesy_the_other_one Member Posts: 170
    edited January 2020
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    Missouri, regarding magnesium and the big D, I've found that magnesium glycinate gives me the magnesium I need without affecting my bowels--it's considered a "better absorbed" form of magnesium. I'm ER-, so not on an AI, but I was on Perjeta, and the D is real with that. I'd bet any money it's been the Perjeta giving you D.

    hapa, it sounds like there was more than one good reason to take Nerlynx!

    I am happy to report that with my break and re-start of Nerlynx, I'm doing worlds better--a night and day difference. Maybe I'll learn at the ripe old age of 57 that willful stubbornness should have its limits. Sadly, I probably won't. PJ, I would never have believed that the break would be so helpful--it will extend my treatment period but food is not repulsive to me and I'm having very little D. My MO said that when women take a break (let the intestines re-normalize), very often when they restart, it's a very different experience. My MO might be excited to hear that I might be (I said might be) more willing to listen the first time next time.


  • PJ_Seattle
    PJ_Seattle Member Posts: 34
    edited January 2020
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    Beesy - I know I would probably benefit from a longer break, but mentally I just can't go there. I started month 9 last week and I just want to finish this, and not extend out the end anymore. The cholestipol is helping, and I am speaking regularly to the pharmacist at my treatment center about managing other side effects. The worst thing now is the fatigue. Winter is a good time to finish this out, we have really short days in Seattle and mostly crappy weather! I just need to get to April, and I can start working my way back in the spring.

    Missouri - I think the blood-brain barrier argument for this drug was probably the deciding factor for lots of us, I know it was for me. You should ask your MO about cholestipol, it has helped me tremendously and I know a lot of women in the FB group have been helped by it. That's if you continue to have issues with D, you might not! You won't know until you try. Some women have had no issues.

    I have good insurance through my company. There was no issue getting it approved, and my copay is $30.

  • hapa
    hapa Member Posts: 613
    edited January 2020
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    I started back today on Nerlynx after my break for surgery.

    Also, my insurance is once again making me get 15 day fills, so the $4500 was only for 15 days not 30. So I guess its $9k/month now, which is still a lot less than the $16k they were paying last year. No wonder we switched pharmacy benefit managers.

  • beesy_the_other_one
    beesy_the_other_one Member Posts: 170
    edited January 2020
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    PJ,

    I hear you, and understand, I really do. I did not expect that the break would do so much for me, but one other interesting idea I want to mention: I take two other prescription drugs for other issues and prior to taking the break, I was taking those with a few supplements at the same time I was taking Nerlynx. After reading on FB and other places, I decided that when I restarted, I would separate out the Nerlynx from any other medication/supplements (kind of a hassle to take N with food, and remember to separate out the others by at least an hour). I was having more trouble with nausea and other SE's when I was taking the meds all at once. Not sure it's a one to one "fix" but worth trying if you happen to be taking other supplements or prescriptions with N. I keep looking for the "magic" solution to the Nerlynx woes, if you can't already tell.

    To be clear, if I had three months to go, I'd muscle through it, D or not, as you are doing. With eight months to go and having spent 6 weeks off, I thought I'd try every single thing I'd read could be exacerbating my issues. Who knows, maybe it was nothing I did--maybe my body finally said, "Okay, you're going to poison me--I will adjust." I felt that way with Perjeta. The loading dose was more than my body could handle. Eventually, my body just adjusted.

    PJ, my sister lives in Seattle and just sent me photos of your snow!

  • leftfootforward
    leftfootforward Member Posts: 1,396
    edited January 2020
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    oh- hope you are well. today I had to try to wrestle a tree out from across my driveway in the snow. Sadly, I was no help. My son and neighbor helped me out.

    I’m thinking i an homeboy for due to snow for a few more days.

    Everyone else, thinking of you.