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Starting Nerlynx in May, 2019

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  • leftfootforward
    leftfootforward Member Posts: 1,396
    edited October 2019
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    hapa-

    I am a living with stage 4 BC. I tried Kadcyla and it failed me. They are putting me on Neratinib to try and control my brain meds. I am hoping it does. Like I said I’m stage 4 so I might be in a tiny minority.

  • laughinggull
    laughinggull Member Posts: 516
    edited October 2019
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    Kadcyla is very conclusively the better drug...check the results of the trial based on which it was approved. It cut recurrence by half across the board and improved survival.

  • laughinggull
    laughinggull Member Posts: 516
    edited October 2019
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    leftfootforward, best of luck with Neratinib. For me, it has been very very tolerable after the first month.

  • hapa
    hapa Member Posts: 613
    edited October 2019
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    leftfootforward, I too have tolerated Neratnib very well. I have had a grand total of two bouts of diarrhea, one of the was after I accidentally double dosed. Best of luck with it.

  • PJ_Seattle
    PJ_Seattle Member Posts: 34
    edited October 2019
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    hapa, I have not had mouth sores, but I do know that they are on the side effects list and my MO has asked if I have had any. I'm sorry that you have gotten them. I completely understand why you would be considering stopping it early, I have those thoughts. Knowing that I still have another six months of this is hard to think about, especially knowing that some taking Nerlynx have an increase in side effects at the eighth or ninth month. This falls during the holidays for me, and that is the last thing that I want! I've mostly decided to just stick it out and hope for the best, it's all I can do at this point. Hang in there, we are here for you!

    Beesy, the first month seems to be the worst for most of us. It was pretty awful for me, and I started the second month on a reduced dose because of it. But, for the most part I am hanging in there these days . . . still having random bouts of D, random bouts of nausea, and almost daily fatigue. I'm on month 6 now, almost half way! That is so interesting about the Miralax! Good on you for giving it a try, I don't think I would have been able to.

  • hapa
    hapa Member Posts: 613
    edited October 2019
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    So apparently Puma Bio has increased the cost of Nerlynx significantly this year. I assume this is because demand has dropped of now that Kadcyla is approved for people with residual cancer after neoadjuvant chemo and fewer people will be taking Nerlynx. I've been thinking a lot about the high cost of pharmaceuticals and what can be done about it. My conclusion is that nothing can be done about it. This is the cost of developing drugs that so few people benefit from. Getting rid of insurance companies is a better route to reducing healthcare costs in the US. Insurance companies are 100% overhead (that assumes they are non-profit, for-profit insurance are 90% overhead + 10% profit), and they add even more overhead in terms of extra staff in doctors offices, pharmacies, and hospitals needed to manage insurance claims.

    I still haven't decided if I will continue with the Nerlynx for the full year, but I am leaning toward staying on it. I am feeling better overall now that I am getting decent sleep again which helps, not that the Nerlynx was responsible for that, but I'm a lot less cranky about things now, lol!

  • lilych
    lilych Member Posts: 176
    edited October 2019
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    hapa, this might be a very silly question but after a full year of HPs, there is no way to get back to Kadcyla any more, correct?

  • hapa
    hapa Member Posts: 613
    edited October 2019
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    Lily, I don't know. I guess you can get it if your MO prescribes it, but most would not. I am a bit skeptical of the Kadcyla data because if I'm reading the study correctly, most of the participants have not reached the 5 year mark and the numbers they are showing for effectiveness are all estimates. I have a friend on Kadcyla who did HP for years (she is stage IV) and she said it is much much harder on her than the HP was.

  • lilych
    lilych Member Posts: 176
    edited October 2019
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    hapa, my wife's MO was not a huge believer for Kadcyla either and she said the comparison was between H and Kadcyla and not between HP and Kadcyla. In other words, she thought Perjeta is a good medication and HP after the surgery is already sufficient, although we kept asking her a few times if Kadcyla and/or nerlynx should be used.

  • hapa
    hapa Member Posts: 613
    edited October 2019
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    Lily, IIRC your wife was already on HP when Kadcyla was approved. I think a lot of MOs didn't want to switch people over when they were halfway through because there was no protocol for that. I think its lazy. I did not do Perjeta, but then I was barely Her2+ to begin with - actually I was negative to begin with and then Her2+ after 3 months on anastrozole and 1 month on Ibrance, and then I was Her2- again at surgery. So I haven't really been arguing with my MO for more Her2 treatment. You can look up the numbers for adjuvant HP vs H only, the added P only gets you a couple percent IIRC. Was your wife's tumor retested for Her2 after surgery?

  • leftfootforward
    leftfootforward Member Posts: 1,396
    edited October 2019
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    s as my one successfully win an appeal to be in this medicine? I’ve been denied so looking for what has worked in the past., thanks in advance.

  • lilych
    lilych Member Posts: 176
    edited October 2019
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    hapa, you were correct that by the time the KATHERINE trial results were announced last December at San Antonio, my wife was already going to have the 3rd HP and the MO said it is going to take some time for FDA approval. When FDA approved in May, my wife was about to have the 10th HP... Yes, her residual was retested, it was 4 mm with Grade 1, ER>90%, PR 30%, HER(3+), Ki67<10%. The BS considered it tiny and indolent. A second opinion from a different MO believed the residual was probably caused by the high ER and hormonal therapy would do it.

  • beesy_the_other_one
    beesy_the_other_one Member Posts: 170
    edited October 2019
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    leftfootforward, will your doctor not help you fight to receive Nerlynx? When I was first diagnosed and Nerlynx hadn't been approved for long, I remember reading of women contacting the manufacturer for financial help because insurance companies were not routinely covering it yet.

    LilyCh, I have a friend with an ER+ tumor that sounds very much like your wife's--also described as tiny and indolent at the time of surgery. Her MO has been consistent saying that for her, AI's will do more for her than anything else.

    I've been on Nerlynx eight weeks yesterday. I'm living life but can I eat whatever I want and do I feel "normal"? Nope. Miralax helped me not quit because at least I am not swinging between diarrhea and constipation. If you read about Miralax's mechanism of action, it attracts water in the colon and is a bulking agent, which, in the case of swinging between D and C, means that at least some of that is normalized. I would suggest that anyone trapped on the D/C trapeze has nothing to lose and everything to gain by trying Miralax. My whole life I've had a bullet-proof stomach and tended toward constipation, so I thought that might be to my advantage on Nerlynx. As it turns out, it wasn't a predictor of how well I would do, after all. Even if I'm not experiencing D or C, my stomach is always a little "off" --- gassy, bloated, nauseated, acidic, something. It's not all at the same time and hardly anything like chemo, but unpleasant.

    I am not on Facebook, but my daughter joined the closed Nerlynx FB group for me. The number of Stage IV women in the group taking Nerlynx is large--they are on Nerlynx for life or until it quits working. I keep reading of women who went from being riddled with brain mets--and mets elsewhere--who are now NED (even those who are hormone negative) and who are grateful to be taking it and maintaining such a good quality of life, relatively-speaking. Obviously, this is anecdotal evidence about the efficacy of this drug, but it encourages me to keep on keeping on. Leftfootforward, if I were you, I'd drive your MO crazy asking for help. If I lived anywhere close by, I'd go with you to drive him or her crazy, until you get your Nerlynx.



  • hapa
    hapa Member Posts: 613
    edited October 2019
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    leftfootforward, I would call the patient info number on nerlynx.com and ask them their advice on getting your insurance to pay for Nerlynx. They are the ones that will get $$ so they will be the most motivated to help you make it happen.

    Lily, I am surprised MOs have been so resistant to giving you Nerlynx. It seems your wife's case fits the indicated use. I think if she really wants to go on it, she needs to do it soon. The longer she waits the less effective it is, it is not effective if she waits more than a year, I think.

    Beesie, I had the lousy feeling stomach for a while too, maybe 2-3 months. I didn't have the swings from D to C though. I also tend toward C, I am surprised you are having so many issues. I have no idea why I've gotten off so easy compared to everyone else. I do eat a very high fiber diet, maybe that's helped. I don't know what else to tell you.

  • beesy_the_other_one
    beesy_the_other_one Member Posts: 170
    edited October 2019
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    leftfootforward, I read this on the FB page--several women corroborated this information but I can't personally verify:

    "There is a co-pay program they should have automatically signed you up for. Everyone qualifies. It's $10.00 co-pay after, through PUMA, the drug manufacturer."

    I'm attaching a screenshot of the PUMA nurse line contact information, which is the number you would need to call to talk to them about this program. I would call and plead for help.


    image


    hapa, I'm glad to know the stomach issues subsided for you as time went on--I did not remember you complaining of them. The Miralax has mostly resolved my D/C swings but there are the occasional times when I cannot explain the D--I've been very careful with what I'm eating. It's down to about once weekly now, but it can be epic. Pre-Nerlynx, I ate a very high fiber diet with loads of uncooked vegetables daily, but that doesn't sit well overall with my current stomach issues (the irony is I feel I'm eating worse than I did in college--counter-intuitive for cancer prevention, I know). I'm hopeful things will settle down more and more as time goes by, but I plan to stick with this unless it becomes physically untenable. I am hopeful I'm through the worst.

    leftfoot, please let us know what you learn!

  • lilych
    lilych Member Posts: 176
    edited October 2019
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    Beesy, thanks so much, it is very nice to know a different MO had a similar thought for a situation similar to my wife's.

    hapa, my wife's MO did not refuse the nerlynx. She simply said if we insist, she may prescribe it but she is really not sure how many benefits we could gain for my wife's situation, especially the SE is real. Also since my wife has been taking anti fungus medications for a tiny lung nodule caused by cryptococcus infection and the medications will probably interfere with nerlynx, we may not consider it.

  • PJ_Seattle
    PJ_Seattle Member Posts: 34
    edited October 2019
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    Beesy - I'm sorry to hear that you are still feeling off and having issues. At almost the half-way point, I am still experiencing D without notice and nothing really different happening that would cause it. It is happening every week or two, and varies as to order of magnitude. I was always very regular before (mostly plant-based diet), and had never even bought a laxative before chemo and a Zofran prescription, and then never needed it. I am also still experiencing some stomach issues similar to what you describe.

    It seems like I am the only one on this thread that is continuing to have issues after several months of Nerlynx, so I am hoping that your side effects will diminish now that you are getting past the first couple of months on this.

  • hapa
    hapa Member Posts: 613
    edited October 2019
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    I wouldn't say I'm not having stomach issues anymore, but they are very mild and tolerable. If I had any certainty whatsoever that I was getting any benefit out of this drug, I would happily stick with it for the remainder of the year. But given my flip-flopping Her2 status, I often feel like its not worth sticking it out.

  • beesy_the_other_one
    beesy_the_other_one Member Posts: 170
    edited October 2019
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    PJ, I've never been a fan of Facebook, but in this case, it's been helpful. One thing I read there recently and started trying is taking digestive enzymes; it seems to be helping the stomach issues. I even ate a small salad the other night with no repercussions. The most odd SE of all? My thumbnails are splitting in the center and the tips of my fingers are splitting right at the nail (I live in Houston, so it's not the cold weather). The ladies on FB report it's the Nerlynx! In desperation on Saturday, I put silk wraps on my thumbnails for protection and hope it helps them grow out. Cutting the nail shorter and shorter was only intensifying the problem.

    hapa, your uncertainty about your HER2+ status makes your situation much less clear—no doubt. In my case, there's never been any question that my tumor was highly HER2+. My tumor went from 1.5 cm at it's largest point at biopsy to 7 cm in two short weeks—and the other two dimensions were equally disconcerting. By this point, the tumor had grown into the nipple, pulling the nipple toward the tumor itself, and that was the moment when my treatments escalated because of the potential skin involvement. You've heard it said that HER2 over-expression is like putting gasoline on a fire? That was my experience.

    leftfootforward, have you gotten anyone's attention at PUMA? Thinking of you.

  • hapa
    hapa Member Posts: 613
    edited October 2019
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    Oh, I almost forgot about the mouth sores. Two new mouth sores this week. I'm fairly certain it's the nerlynx. It's definitely not gotten better

  • PJ_Seattle
    PJ_Seattle Member Posts: 34
    edited October 2019
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    Beesy - I have also been having issues with my skin splitting on the tips of my fingers at the corners of my nails! I didn't think to attribute it to the Nerlynx though. Sheesh, something else. I will look into the digestive enzymes, I'm willing to try anything at this point. I've been having more D and nausea again the last ten days or so.

    hapa - I'm really sorry that you are feeling in such limbo regarding your HER2 status, and this medication. And, the mouth sores! Ouch, that sounds painful. How far along are you in your year of this?

  • kaufmanscsi
    kaufmanscsi Member Posts: 17
    edited November 2019
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    Hello all. My name is Caren and I am a stage 4, 14 year survivor (stage 4 for 11 years). Anyway, started on Nerlynx about 4 weeks ago and weirdly, it's been one of the most difficult drugs I've taken - and I've taken a LOT of them! GI troubles - in large part due to having to stop my 12 year run of Nexium because it conflicts. So, I get diarrhea AND heartburn. My oncologist lowered my dose to 5 pills and I take Immodium regularly, and eat blandly, so the D is under control for the most part, but this heartburn sucks. Zantac works a bit, but I feel like I should have been a Nexium spokesperson because it was WONDERFUL (one of those situations where "you don't know what you've got till it's gone"). Anyway, also I have intense fatigue and incredibly dry skin and eyes. I don't know if that's the Nerlynx or the immodium doing that. I have worn contacts since I was 14 years old and I am about to ditch them and wear glasses all the time because they are becoming one with my eyeballs. Anyway, thanks for all your advice. I will try it all. I also live in NJ so I am pursuing a medical marijuana card to help with the GI issues. I really hope that time eases the side effects of this nasty drug (or at least that it's working on getting rid of my one lymph node metastisis).

  • kaufmanscsi
    kaufmanscsi Member Posts: 17
    edited November 2019
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    Totally get it. Certainty of the drug working would help me tolerate it too!



  • kaufmanscsi
    kaufmanscsi Member Posts: 17
    edited November 2019
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    Hapa, totally get it. Certainty of the drug working would help me tolerate it too!

  • hapa
    hapa Member Posts: 613
    edited November 2019
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    Hi Carin,

    I was told that people start having side effects at 5 pills/day. Perhaps ask your MO if you can drop down to 4, or maybe even stop for a few days and restart at 4, and see how that goes. I would try that before giving up on the Nerlynx. Sorry I can't help you much with the heartburn as I've never had chronic heartburn or GERD. I hope you can find some relief from that.

  • laughinggull
    laughinggull Member Posts: 516
    edited November 2019
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    Hi Caren,

    For me the first month was the worst, things eased up a lot with time. I am starting my eighth month on Nerlynx, and have zero GI problems, regardless of what I eat or drink. I have had only a short D episode only in the past few months, and it was on a day where I accidentally took a double dose i.e .12 pills.

    My skin and eyes are very dry, but I was blaming that on the AIs. Annoying, but manageable with artificial tears and lots of lotions/creams/oils.

    I would say give it a bit more time and stick to the bland food.

    LaughingGull

  • hapa
    hapa Member Posts: 613
    edited November 2019
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    LG - I thought I was the only one who took a double dose! It took a couple weeks for things to completely die down after that, mostly I just felt like my stomach was doing flips for a while. But since that all calmed down I haven't really had any GI issues at all. It's like after that, my innards scoff at just six pills.

    Also, after reading about Carin's trouble with heartburn since she went off Nexium, I went down the rabbit hole of seeing why Nexium is contraindicated for Nerlynx. It's because Nerlynx dissolves in acid and needs a really acidic pH when you take it, otherwise it is not well absorbed. I guess this is why I was told to take it with food.

  • hapa
    hapa Member Posts: 613
    edited November 2019
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    I have a question for people using the copay assistance card:

    I'm currently on a medical plan that requires a $150 copay for specialty drugs. So I have the Nerlynx copay card, and they pay $140 of that and I pay the other $10. I'd like to do a CHP plan next year in which I would have a 20% copay instead of the flat $150. So at a rate of $16,000/month for Nerlynx, I would have a $3200 copay, until I hit my OOP max, which is $4000. Will the copay card cover this? Does anyone have a copay that high? Obviously, if Puma is going to pay most of my OOP max, that would be great. But if I'm going to be stuck with it then I'd rather keep my current plan, because I don't otherwise expect to have that many expenses next year.

    I have until Friday to change my plan.

  • beesy_the_other_one
    beesy_the_other_one Member Posts: 170
    edited November 2019
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    Boy, hapa, you've always wondered about staying on Nerlynx. Those numbers may drive you there. Before cancer I would complain about our insurance, but no more. I'm involved in a small engineering business with my husband and his family so we pay for our own insurance (unlike a situation where a big company you work for pays most and you chip in). We pay a lot but as it turns out, our insurance has been great through this.

    hapa, I saw elsewhere on the BCO that you're going to do some fat grafting. I'd be interested in hearing how that goes when you're on the other side. I did not do reconstruction, had a PS close and even though I went with photos of what I did not want, she did what she wanted and apparently believed I would change my mind about reconstruction. I've identified one of those "sculpt your body" PS's who does reconstruction for MD Anderson in West Houston for breast cancer patients (a radiation friend used him). They make women in to men these days and I can't look less lumpy, etc?

    I came to report that suddenly, and very out of the blue, I've started feeling better. Bowels are not "normal" but hugely improved--and I just FEEL better. I can't attribute it to anything in particular. It's as if a switch was turned. I've even started craving salads and food in general when the opposite has been true for months. Food has been repulsive to me--worse than chemo. Fortunately (or unfortunately?), with my metabolism I'm able to subsist on almost nothing (I'd be the last person alive in a famine), so rest assured I'm not withering away. With Perjeta, I had terrible D for two cycles and it was as if my body said, "Fine, you're going to poison me. I give up." I only report this for others reading this who wonder if they will ever adjust. I went back and looked at the calendar and it's been 16 weeks yesterday since I started.

  • hapa
    hapa Member Posts: 613
    edited November 2019
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    Beesy - I'm glad to hear the clouds have parted and you're doing well now. It does seem like things just suddenly take a turn for the better for no reason at all. I'll take it. My fat grafting is scheduled for Dec 27. I will also have the right implant dropped a bit, it sits higher than the left side. New PS is wet behind the ears but my old PS has already had two tries at getting this sh*t right, plus she's on leave, so I'll try this guy. Considering pre-pec is relatively new, maybe the newer PS will be a better fit anyway. I know my old one had either done no or very few pre-pec reconstructions before I came along, and her results showed it.

    I decided to take the plunge on the high deductible plan. We'll see what happens. I have a coworker on this plan who gets revlimid for multiple myeloma and that is $20k/month, so he hits his out of pocket with his first refill every year, but he couldn't remember if his copay card covered it or not. Who in the world doesn't remember saving $4k?