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Starting Nerlynx in May, 2019

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  • Homemadesalsa
    Homemadesalsa Member Posts: 138
    edited August 2019
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    How did it go, LG?

    No pics.from my race, but it was brutal this year, a bit longer than last year and HOT. 31 miles, which is 50k, and 3500' of climbing. I had 2 episodes of cramping, but finished 5th in my 50+ women's category. Now officially retired from racing, which is funny because this is the only race I've ever done.

    On topic, 5 episodes of D before the race, none attributed to the Nerlynx, just pre-race typical, haha. 1 imodium to prevent any further damage.

    Now back to regularly scheduled programming.

  • laughinggull
    laughinggull Member Posts: 516
    edited August 2019
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    Hi homemadesalsa,

    My race was good, although I arrived last Happy

    There were two events, a 1-mile swim, and a 2-mile swim. The vast majority of swimmers registered for the 1-mile, so in the 2-mile there were only the very good swimmers, hence my arriving last! They were removing the buoys as I was passing them in my last leg. In any case, it was a glorious swim in a perfect day. I also had cramping, which is why I was already swimming slowly.

    The rest of the weekend, my husband and I went on a mini-road trip, to celebrate our 15th wedding anniversary. We went to the Berkshires in Massachussetts and we visited The Mount, Edith Wharton's home there. It was awesome.

    Normal life, no D, great spirits. Just cramps when I workout hard, and also probably more tired than usual (dont notice it in my normal life, but I do notice it in my times), hard to tell which is Nerlynx and which is AI

    Hope everyone is enjoying the summer,

    LaughingGull

  • Patsfan12
    Patsfan12 Member Posts: 3
    edited August 2019
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    Hi all,

    Question for anyone on Nerlynx...I'm in my 8th month now and up until this point have had very little diarrhea...I've maybe had to take Immodium once a week when things got a little wonky so I was feeling really lucky. It got worse whenever I travelled but always settled back down within a day or two....then I went on a cruise last week and all hell has broken loose (literally). I have terrible cramps, no appetite, 4-6 completely watery bowel movements for the last week or so. I've tried taking a day off to see that if that will reset my system but nothing seems to be helping. Has anyone else experienced anything like this? Any thoughts or suggestions would be appreciated! Thanks!!

  • hapa
    hapa Member Posts: 613
    edited August 2019
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    Patsfan, you may have gotten food poisoning on your vacation, though that typically resolves in a couple days on its own. Some people also have major food triggers while they're on nerlynx and you may have stumbled onto one of yours during the cruise. If it has been a week already, you should go see a doctor. Another thing that helps people with digestive problems sometimes it to just stop eating for a day or two. It gives the digestive system a break so it can heal. Make sure you're drinking plenty of fluids. If it is the nerlynx, your doctor can prescribe colestipol, which seems to work really well for a lot of women on nerlynx.

  • Patsfan12
    Patsfan12 Member Posts: 3
    edited August 2019
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    Thanks hapa,

    I'm pretty sure it's not food poisoning, it's not acting like that. I took another day off Nerlynx today and things seem to be improving a little so I'll just keep an eye on it and if it's not better in a day or two, I'll definitely email my MO.

  • PJ_Seattle
    PJ_Seattle Member Posts: 34
    edited August 2019
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    Patsfan: I'm sorry that happened to you, especially since you hadn't had troubles like that before . . . and on vacation no less! The amount of D you had definitely warrants an email to the MO, mine took me off of it for a week when I had a bad 5-day period. Although, it sounds like you are taking the break already! I hope things are better.

    I am a week into month four, and still experiencing D every week or two, out of the blue. Sigh. I hope that every time is the last time, but not yet. Last week, I had a bad morning with it, 5 episodes in a 90 minute period as I was trying to get ready to go to work. I took an immodium and a lomotil to stop it, but had to work for an hour at home to wait for it to kick in before I could go into the office. I ride the bus, so there is no risking leaving the house until I know I am D-free! :) The fatigue is still happening every day, which is really frustrating.

    I am having all of my two-year anniversaries right now: diagnosis, team appt, starting chemo. That also means I am now in Year 3 of being in treatment, which is still really hard to wrap my mind around!

  • hapa
    hapa Member Posts: 613
    edited August 2019
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    Has anyone managed to get over the fatigue?

    My pharmacist (one of two that are following me right now) mentioned that the fatigue and insomnia may be partly due to the nerlynx. I had assumed they were from the anastrozole. Are any of you ladies that are taking reduced doses of nerlynx feeling fatigue? I'm considering dialing back to see if things improve. I feel like six pills is a lot for little old me.

    Patsfan, how are things going for you? Did you manage to reset after your break? Have you started back on the nerlynx yet?

  • Homemadesalsa
    Homemadesalsa Member Posts: 138
    edited August 2019
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    Hey hapa- I'm on 4 for the duration, and it's manageable at 133#. Still some fatigue and cramping in my legs on long mountain bike rides, which could be the anastrozole, but hard to say as I have no control data. I am switching to letrozole next week to try and get my hand arthritis under control (a challenging condition for a climbing guide), and we shall see what changes. The CVS specialty nurse was unusually candid with me on the phone a few weeks ago- she said that NOW Puma is suggesting that MOs and patients start low and titrate up to manageable numbers of the Nerlynx, and that starting with 6 is a recipe for disaster. Drug levels in the blood make a difference at 3, she said.

  • beesy_the_other_one
    beesy_the_other_one Member Posts: 170
    edited August 2019
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    I signed consent for Nerlynx Wednesday, insurance approved it Thursday and the specialty pharmacy has mailed it already. My MO is running a trial about titrating up to avoid the Big D and he says it is definitely showing to help significantly. In fact, my MO said one of his patients on the trial (who had been chronically constipated her whole life) went ahead and took the Imodium while starting slow and it did not turn out so well for her, if you know what I mean, so his suggestion was to "consider what you know about your body." If she had been following you ladies, she would have known to eat more cherries!

    My daughter is getting married in three months. My MO said if I need to take a break, I can. He says Nerlynx is cumulative, so if you take a break, you just resume until it equals a year. So, Homemadesalsa, taking four you'll just take until you finish all the medication or will you stop after a year? I hope the fatigue gets better for you soon, hapa.

    Seems like it shouldn't have taken Puma so long to suggest the slow build-up.

  • Homemadesalsa
    Homemadesalsa Member Posts: 138
    edited August 2019
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    Best of luck to you, other Beesy. Plenty of good advice in this thread and elsewhere. At 4 per day I eat salad and whatever I want. 1 colestipol in the evening takes care of it for the next morning. And I am most certainly NOT going to take this stuff for longer than a year, even if I only take 4. Ugh.

  • PJ_Seattle
    PJ_Seattle Member Posts: 34
    edited August 2019
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    hapa - I am still struggling with fatigue at month 4 and taking 5/day. I've had to plan every day based on what is on the calendar, otherwise I would never make it. If I have a long day, I feel the effects for a day or two after.

    Beesy - good luck! At 5/day, I am eating what I want . . . but still experiencing D randomly every 10 days or so, and nausea on occasion.

    I think my MO is fine with me taking 5/day for the rest of my year. I don't think he will ask about going back to 6, and I have no intention of doing so! My first month was awful. It figures that PUMA is now recommending ramping up! I guess we really are the guinea pigs for this.


  • beesy_the_other_one
    beesy_the_other_one Member Posts: 170
    edited August 2019
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    Homemade, I wonder why there's not more consideration given to your weight with Nerlynx? With Herceptin, they wouldn't even put it in a bag for me until I was weighed. THAT makes sense to me. I just started at the beginning of this thread to review what you all did that helped and noted that you started with two pills, went to three and then four (and I know from a recent comment you stopped there). I'm under 5 feet tall and weigh under 120 lbs. My MO said start with four pills, in two weeks take five and then two weeks later, six. 😬 I'm guessing none of you are oncologists, but what say you?

    Also, Homemade, I'm concerned about leg cramping by not taking magnesium (which I'm going to quit taking this weekend to avoid making matters worse once I start the Nerlynx). My mother-in-law uses magnesium oil because she can't take magnesium orally and it helps with the cramping, so I've ordered some.

    My Nerlynx arrives Friday. I'm going to finish re-reading all that you veterans have written to refresh my memory. When this thread was started, I bookmarked an old thread LaughingGull mentioned where Zoziana talked about things that helped her and I remember her making a big deal about taking it with a substantive meal. I will avoid cherries for awhile--that I have emblazoned on my brain!


  • Homemadesalsa
    Homemadesalsa Member Posts: 138
    edited August 2019
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    Beesy good for you for doing your homework. And honestly, my MO tried to start me on 4, but after reading a lot of material and being on the FB group for Nerlynx (which will scare the pants off you if you read it too diligently), I decided to titrate myself with 2-3-4. The CVS nurse is great- very clear and honest- and she's the one who corroborated my decision. She also said that we gain benefit from at least 3 per day. As someone said up-thread, we are indeed the guinea pigs for Puma!

    So I started mid-May, and took some imodium and colestipol now and then, but now, 3 months later, I can eat just about anything. I just added the magnesium since I cramped really badly in a bike race a few weeks ago. That's never happened before... I take mine in the morning with my AI and supplements, and I don't think I have trouble with fatigue, although my energy levels are less consistent for sure. Hard to know if that's the Nerlynx or the AI. Good to know about magnesium oil though- I had never heard of that, will look it up.

  • hapa
    hapa Member Posts: 613
    edited August 2019
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    Homemadesalsa, do you also have insomnia? I'm wondering if getting the insomnia under control will get rid of the fatigue. I'm going to try CBT-I since it is supposedly as effective as sleeping pills

  • Homemadesalsa
    Homemadesalsa Member Posts: 138
    edited August 2019
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    Hi Hapa- If I have insomnia, it is usually due to one of two causes: 1- I drank coffee too late in the afternoon, or too much wine/ rich food at dinner. Or 2- I had a very high output day in the hills- rode 20+ miles on my bike, big ski day, or some such, and have a hard time getting my heart rate and metabolism back down. Ibuprofen or a little snort of Nyquil usually does the trick.

    So I don't think either of those is attributable to the Nerlynx, which I take in the morning. I also take a pretty good load of supplements, which I've been doing since chemo was over: turmeric, fish oil, lysine (I get cold sores otherwise), calcium, D3, a multivitamin, and now magnesium, plus arimidex.

  • PJ_Seattle
    PJ_Seattle Member Posts: 34
    edited September 2019
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    Beesy - I hope things are going well for you! I hope you have found that taking it with a larger meal helps, it was something that took me a while to figure out. I take my pills in the morning, and have never been a breakfast eater, so I had to change my morning routine to include food before I left for work. I was eating a piece of toast or half of a toasted bagel (usually with nothing on it), and having nausea issues quite a bit for the first few months. So, now I eat the same breakfast but have added trying to get in two or three small snacks (fruit, nuts) in the first few hours after I take them and it has helped a lot.

    hapa - I'm still struggling the most with fatigue, which I was experiencing before I started Nerlynx, but was made worse when I started taking it. I am not having insomnia issues, though. I used to have trouble sleeping all the time before my diagnosis, but it was almost always work-related. When my priorities changed during treatment, and because of treatment, I sleep better now than I ever have. I hope you are getting some relief and are sleeping, it can be so frustrating!

    I started month 5 last week . . . not that I'm keeping track. :)

  • beesy_the_other_one
    beesy_the_other_one Member Posts: 170
    edited September 2019
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    PJ---Congrats on starting month #5! We need to celebrate milestones! Thank you for checking on me. I am doing very well on the whole. After talking more via PM with HomemadeSalsa, I opted for starting with two pills and am already up to three. Did great until day five, at which point my lack of taking Imodium** and eating salads daily got the better of me [**I lean toward C naturally and have learned to combat it well but the idea of taking Imodium just freaks me out--I can't lie]. I started with the Imodium at that point, stopped the raw vegetables and even though I'm only taking one a day now, I'm verging on C and I loathe that! I have followed your tip to take Nerlynx with a large meal and like you, I chose breakfast.

    One thing I read two women mention in two different places: they take/took one Imodium thirty minutes before taking the Nerlynx and they never had D again. Thought it was interesting, considering the generally accepted practice is to take Imodium after an incident of D. The other thing I keep reading over and over is that women generally complain about terrible diarrhea or fatigue, as if you have one or the other. This is a non-scientific Beesy study, so it's worth everything you're paying for it.

    PJ, Homemade, LaughingGull, hapa, Patsfan--I can honestly say I benefitted from following in your footsteps. So thank you for paving the way and making it easier for those of us coming behind.

  • hapa
    hapa Member Posts: 613
    edited September 2019
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    I think I accidentally double dosed my Nerlynx and anastrozole yesterday. And then I took my regular dose this morning. It's going about as well as you'd expect.

  • beesy_the_other_one
    beesy_the_other_one Member Posts: 170
    edited September 2019
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    Oh hapa--that sounds miserable. 😕

    Almost a month ago, I started with two pills, went to three after a week and then after another week, went to four . . . until I hit last weekend. Saturday was an eight Imodium day followed by Sunday which was a six Imodium day. My biggest issue was the swing between D and C--and it felt like my colon was revolting all the time (it wasn't because I was eating cherries). Friends kept asking about my bottom but that wasn't my issue! It's that my insides were literally not happy--all the time. Monday my daughter texted me that she'd gone to get coffee with a friend with IBS. This friend strongly recommended Miralax. I texted back saying, she's suggesting I take a LAXATIVE WHEN I HAVE DIARRHEA? She said it seems to bind and normalize things. It was a real leap of faith, but I have to tell anyone reading, I've had the best week since I started Nerlynx!

  • hapa
    hapa Member Posts: 613
    edited September 2019
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    Oh wow Beesy, that's interesting.

    My D wasn't terrible (again, just one bad bout and a few loose stools but no urgency) but my insides are doing all kinds of twists and turns.

    I am debating stopping Nerlynx early. I know its not my money but I have such a hard time justifying spending $16k/month on something that maybe works for some people, and even if it does the one year thing was just kind of pulled out of thin air. One year is just how long they thought they could get away with, I assume there was no data or anything behind that number. So I'm thinking about stopping at 8 or 9 months.

  • laughinggull
    laughinggull Member Posts: 516
    edited September 2019
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    Hi all,

    I am about to start month seven. -once I receive the medication, there seems to have been a miscommunication between my dr's office and the pharmacy and I may run out before I receive the new bottle. My life is 100% normal, except that my times at sports are not what they used to be pre-cancer, but that may not be attributable to Nerlynx since I have been through a lot and I am also on hormone treatment.

    Wow Beesy that sounds awful. Six, seven Immodium? My God. One Immodium constipates me for an entire week -this is excluding the first month taking Nerlynx, which was rougher.

    hapa what you say it's interesting. Wondering if there was some science at the biological level hinting at the one year being a reasonable timeframe; or maybe it was a conclusion that could be reached by comparison with drugs that work with similar mechanism? Can't believe that they just made that up out of thin air.

    Also about the cost hapa, is your insurance not covering the cost of your Nerlynx? In my case, if my insurance covers it and the evidence is there, I will take it. All prices in cancer-world in the US are insane anyway. The $18,000 Neulasta shot during chemo comes to mind. None of that is my fault, that's a problem beyond my control, frankly.

    Best to all,

    LaughingGull


  • beesy_the_other_one
    beesy_the_other_one Member Posts: 170
    edited September 2019
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    hapa, I understand the twisting and turning. I used the word "revolting," but either way, that is the symptom I'm most pleased that Miralax has calmed, but it's helped everything to be more normal. For me, it's been a life-changer. LaughingGull, being that I'm still in the first month, I wasn't ready to bail on this, but because the Miralax has improved things so much I'm actually hopeful now, though I'm still not eating any uncooked vegetables--or brussels sprouts. I don't think I posted after the night after I ate the most delicious brussels sprouts . . . boy, did I pay for that all night! That's the only definite trigger I've discovered.

    I'm not on Facebook, but my daughter joined the Nerlynx group for me because several women here on BCO recommended it. There are more Stage IV women on there, some of whom were riddled with brain mets (as well as some with lung, liver and bone mets) who are now NED or stable because of Nerlynx---women who will be on the drug the rest of their lives or until it quits working. Some of the women I describe are ER-/PR- like me and it's worked wonders for them and given them a decent quality of life. You can search the group using terms such as ER-, Stage IV, whatever. There's more drama overall on the site, but you can toss that out the same as you do here.

    I am only mentioning it because it gave me a different perspective on this drug.



  • hapa
    hapa Member Posts: 613
    edited September 2019
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    LG - I hear what you're saying about the problem being one you can't solve. I looked up Puma's last financial statement and they are still losing money every quarter, so it's not like I'm making anyone rich by taking this drug right now, though I know that is the primary motivation of someone out there, or this company wouldn't exist. I need to think about this some more.

    Beesy - thanks for that info.

    I should also add that part of my reluctance is due to questions over if I was really ever Her2+.

  • beesy_the_other_one
    beesy_the_other_one Member Posts: 170
    edited September 2019
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    Well, that's a very valid concern, hapa. I never noticed that you went from being HER2- to HER2+, so your question is, did you really? In contrast, my pathology report graded me a 3+ on HER2 over-expression--greater than 90% of tumor cells had uniform intense complete membrane staining.

    I was not questioning your inner debate about the possibility of stopping Nerlynx at nine months--not at all. I'm not even a full month in and before Miralax, I wasn't sure I could get to a month because my insides were literally revolting. No judgment here.

  • hapa
    hapa Member Posts: 613
    edited October 2019
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    Question: is anyone getting mouth sores on Nerlynx? I got them pretty bad during chemo, though I admit I didn't do a whole lot about it because I just felt like it was the least of my problems. But I was still getting them pretty regularly still while I was just on Herceptin. And now on Nerlynx, they are less frequent than when I was on just the H, but I'm still getting them. I don't remember getting this many mouth sores before cancer.

  • margun
    margun Member Posts: 385
    edited October 2019
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    I am triple positive and on herceptin. Soon I will start hormone pills.No one mentioned me taking Nerlynx or Perjeta. In what cases these 2 are prescribed ?

  • laughinggull
    laughinggull Member Posts: 516
    edited October 2019
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    hapa, no mouth sores on Nerlynx

    margun, Nerlynx is indicated for patients with residual cancer after neoadjuvant therapy that included chemo and herceptin. This is grosso modo and applies only to certain patients because the practice for these patients now includes Kadcyla. Maybe if you make your treatment info and diagnosis public that would help the discussion.

  • beesy_the_other_one
    beesy_the_other_one Member Posts: 170
    edited October 2019
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    hapa, just this week I've had a few sores in my mouth and wondered if it weren't the Nerlynx. Given what it does to your GI tract (or some of us anyway), it makes some sense it could be the cause.

    Yesterday, my Specialty Pharmacy Nurse called for the check-in and I told her about the Miralax. No one had ever mentioned to her they'd tried it. Within a few days, using Miralax, I went from thinking I would have to quit to feeling what I would describe as 90% normal--just a little inner revolting going on, but no D and no C. Amazing. The nurse told me she was going to report this to Puma.

  • 1207262
    1207262 Member Posts: 20
    edited October 2019
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    A couple questions…

    Is Kadcyla or Nernylx supposed to have superior benefit? Or is that not yet conclusive? Also, could you take Nernylx after having Kadcyla (with Herceptin being taken in the neoadjuvant form and Kadcyla adjuvant)? Or is that not possible?

    Thanks, ladies!

  • hapa
    hapa Member Posts: 613
    edited October 2019
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    Kadcyla has better benefit and the study was better organized, although there is only limited data so far. I see no reason why you couldn't take Nerlynx after Kadcyla but I don't know of anyone who has actually done that.