Nerlynx Approved by FDA to Treat Early-Stage, HER2-Positive BC
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Hi everyone. The nerlynx is a beast. I have tried all sorts of things to battle the side effects. This week a change in probiotic is the newest idea. I have had to take Imodium more frequently as well. The heat is brutal too. I find I am zapped with fatigue. But handling it ok. Hope everyone is doing well
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Suburbs, I'm so glad you checked in. I've been wondering how everyone is doing. I'm well into third month now. There have been some bad days but I'm down to one Imodium a day, sometimes less. I hope to start cutting it in half to further decrease the dose. Sometimes one Imodium is too much.
Last night I went to a Mexican restaurant and ate/ drank things that I figured I would pay for later. And guess what? No problems!! I was shocked.
I did have one of the less common side effects last weekend after a physically exhausting day- long run, moving stuff from storage to home and up and down two flights of stairs all day. That evening and night I had terrible muscle spasms, in upper thighs, arms, feet, even my neck. Now I've had Charley horse calf spasms in the past but never in these other parts of my body. This was odd. Read on my printout today that muscle spasms are a side effect of Nerlynx.
Ditto the heat. That can’t be helping anyone. I’ve moved into the basement and am coping that way.
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Hi ladies
I'm starting my 5th month of nerylnx. The diarrhea comes and goes. I have a prescription for lomotil haven't had to take it in a couple weeks.,but I carry that bottle around with me just in case. The big D is predictable.
I too have had muscle spasms. Doctor said to eat bananas orange juice tomatoes and water with electrolyte. Still have some spasm but don't want to be on another pill. So I'm dealing with it.
Hope the SE get better for us all.
Hahlyn
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I am about to start my last month of Nerlynx-yay! I have been able to take the full dose with very limited immodium. I do have occasional bouts of diarrhea but it’s controllable. My biggest side effect has been the muscle spasms. They are worse if I have been working out on a stair stepper (weird?) or running in the heat. I try to hydrate but drinking electrolytes is crucial. I also had spasms during Herceptin. I’m hoping they will cease when I’m done with all of these medications. Good luck to everyone!
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Wellshoot, interesting to read about others having the muscle spasms. Maybe it isn’t as uncommon as they claim.
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There are several on the Facebook group of nerlynx users that complain of muscle spasms. I kinda think it’s fairly common. My oncologist just said to drink more water and drink Gatorade- which I don’t like. A friend suggested a powdered electrolyte (emergenC?) that I mix up and drink. It’s not as sweet and I do think it helps. Although- last night I had a couple of cramping episodes. They sure are painful!
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I've over 6 months on this now. No huge problems but I'm getting tired of it. Will be happy to hit the 12-month mark and out.
My worst problems the last couple of months have been when traveling. I went on a hiking-oriented trip last month overseas, and must confess I cheated and dropped the dose to 4 pills a day vs 6 to avoid the D issues and soften the fatigue that hits me hard in mid-evening.
Fatigue is still my main concern. Occasional foot or leg cramps, and sometimes D issues. But thankful I've not had any horrific D or other intense concerns over this period of time. I'll be happy to be done with it, and I hope it's doing its job. Best wishes to all.
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hi! I'm new to this forum and start Nerlynx next week, after my 2nd (and I hope final) touches on my bilateral lat flap recon. Please someone tell me what to eat, do or not do, your best tips for getting thru this....Thank you everyone!
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I just started Nerlynx this past week. I took it the first night right after dinner, and experienced quite a bit of nausea and GI upset, so I took Immodium. I also happened to take Benadryl a couple of hours later for allergies, and noticed that my side effects subsided after that. The following night I took the Benadryl at the same time as the Nerlynx, and I had very mild nausea and did not need Immodium. The third night, I took the Benadryl one hour before taking the Nerlynx, and had no symptoms at all. I have not needed to take the Immodium since the first night. Has anyone else had a similar experience with taking an antihistamine along with the Nerlynx?
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Hi all. LB0707, maybe you are on to something. Benadryl can’t hurt. I have just about hit the 6month mark and have decided to stop the nerlynx. My gut health just continued to get worse and I have been feeling lousy for months. I might have been able to continue but a post surgery infection and a recent surgery have made continuing even more miserable. I’ve made peace with my decision as I did give it a good try. My oncologist was ok with it. For everyone still toughing it out, keep up the good work. I wish you the best.
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Interesting. I’m in 4th month of Nerlynx and started taking daily generic Claritin about six weeks ago. My Nerlynx SE are pretty mild.
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Sandonna, let us know how you’re doing. By now you may be starting to figure out what some of your triggers are. I think it’s an individual thing for each of us.
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Hi all, I have been reading with interest this thread, my MO has prescribed Nerlynx for me and I will be starting as soon as the insurance issues are resolved. I should know more about when tomorrow. Thank you for all your posting to help prepare for this drug. I am excited to get something that crosses the blood brain barrier as I have read others have noted about this, too. Good luck everyone and here's hope for less and less side effects for us all!
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I will have my Nerlynx tomorrow. Approval was pretty quick and my co pay is not much at all.
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Hello everyone, I am wondering if anyone here is hormone negative and taking Neratinib. If yes, can you please let me know based on what reasons? All the statistics I have seen show that hormone negative do not benefit from it.
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In my opinion, the administration of nerlynx for hormone negative in the Extenet trial has begun too late (on average).
It is well known that the hormone neg recur earlier, especially immediately after the interruption of Hercpetin, and infused in a further analysis of the sub-group hr-, we see that who started in nerlynx within 6 months from the end of the trastuzumab had a benefit at 2 and 5 years similar to the group as a whole .
However, these subgroup analyzes do not conform to the scientific method, because the Extenet trial had not been enhanced in this sense (we do not know if the others biological characteristics of hormone positive subgroup were similar and not more aggressive, on average, than the hormone neg). But, wanting to read the data as if they were scientific, time to initiation could be the key to reading. In fact, in neoadjuvant and metastatic trials nerlyx has helped more hormones neg population, as expected.
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Thank you, Mary, for this insight!
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Just curious, has anyone adjusted or reduced your work schedule while on Nerlynx? It's been crossing my mind due to fatigue lately, but trying to stick it out. I have 4 months to go.
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Hi Misslil
I haven't reduced my work schedule. I Just try and do what I can. This unfortunately is my new normal.
Has anyone been having muscle cramps body cramps? Sometimes they take my breath away.
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I've had some foot cramps/lower leg cramping. Not sure why. Fairly often at night, it wakes me up periodically.
Lately I've also had several instances feeling short of breath. It seems like more going on than just that with fatigue I'm not as active as I sometimes can be, but hard to be sure.
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Hi. I lasted 6 months on nerlynx and haven’t looked back. Everyday is getting better. My gut health and my skin are still recovering from the residual affects. I did consider taking time off from work but a year is a very long time. Admittedly, I felt pretty rotten towards the end. The side effects were manageable but rotten for me. Muscle aches and cramps were routine. This is probably due to the need to balance water intake between not enough and too much. Electrolyte water did help. Hang in there.
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I just started taking the medication this week when will I start to have side effects?
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Hi Ladies - I just wanted to put in my own data point - I started neratinib exactly 4 weeks ago. It has been a lot easier than I expected. I know the effects vary for everyone, but I just wanted to write about my own experience. I started on a Monday, took no anti-D drugs until I got D on Friday/Saturday big time. At that point, I started taking 2 diphenoxylate (Lomotil) morning and evening, and have only had D about 1-2 times since then, and I have really tapered off on the diphenoxylate for the past week or so (haven't taken it at all in the past few days), and it has been fine. Just want to put it out there for those that are scared stiff or dreading this - I definitely was too, and even requested to work from home this whole month (!), which turned out to be unnecessary. Also, no other side effects such as rashes and cramping thus far. So, as I said, I know there is a range of experiences with this drug, but wanted to report mine, in case it would be useful for anyone.
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silkworm, nice to know, thanks for sharing. Just out of curiosity, have you taken H and P for a year as well prior to taking neratinib?
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Sorry Lily, just added my DX/TX. Yes - had H/P as well, and completed that in May of this year I believe.
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Thanks, silkworm. Sorry for asking additional questions: Did you have the neo-adjuvant chemo?
During the visit last week, MO sounded like, neo-adjuvant chemo TCHP, followed by one year of HP only and after that, another (year? several months?) of neratinib is the "standard" treatment now, which is a little bit surprising to me.
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Hi LilyCH
That sounds interesting. My MO has not mentioned Nerlynx/Neratinib at all as standard treatment. I will see him on Wednesday and ask him and post an update then.
Thank you,
LaughingGull
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LaughingGull, yes, please do keep us posted, as it was new to us as well.
Thank you.
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My MO has still never brought this drug up - and I'm kind of afraid to! It's possible that he hasn't because I'm already not taking the Tamoxifen that was recommended. Part of me thinks that I should ask about it (pretty much threw the whole kitchen sink at it), but a lot of me thinks it's probably not worth the trouble for someone like me (pCR).
Thoughts?
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NotVery -There is a time constraint between Herceptin/Perjeta and Nerlynx, but I can't remember how long it is. I think it's within 2 years of surgery & chemo treatment including Herceptin.
Here's what I found on one site: Neratinib (Nerlynx®) is taken within 2 years after completion of trastuzumab-based therapy to help keep the cancer in remission longer, and prevent recurrent disease.
I do know I'm too far out from my TCHP to be eligible for Nerlynx.
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