Starting Nerlynx in May, 2019
Hello all,
I have just completed my year of Herceptin treatment on April 3, 2019. I am scheduled to start Nerlynx in May, 2019. I would like to have a forum where others on Nerlynx or starting Nerlynx can discuss our symptoms and side effects. If anyone can give me some advice on what side effects besides diarrhea I can expect that would be awesome. I would also like some tips to reduce the side effects. Thanks so much!
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Good idea. Can I join? I started Nerlynx on April 3rd, so today is my 10th day on Nerlynx.
So far, I have diarrhea and occasional light nausea. No fatigue. The diarrhea is serious and relentless, but it seems to be getting betterish in the last two days. For the last week, I have subsisted on oatmeal, bananas, white rice, bread, pasta and roasted chicken (without the skin), and I drink water, tea and electrolytes drink. The diarrhea for me started on day 5. Taking Immodium only.
I am riding this patiently hoping it's temporary -can't see living like this for an entire year.
For the moment, I am doing normal life, working full time and going to the gym three times a week. But yesterday for example it was hard to be at work, because I had a day-long event where I was supposed to stand, attend conferences, mingle with people, eat, drink....
I will welcome having company from others who are going through the same and share side effects and ways to best manage them.
Look for a link from Zoziana in an old Nerlynx thread -she gives good advice. I read her post like a dozen times.
LaughingGull
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Hello - I am also on Nerlynx. On my third month. I have found a great group on Facebook for people who are currently taking Nerlynx or finished their one year of it.
Search for Nerlynx (Neratinib) Support Group on Facebook and you will find it.
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Hi rowland,
I heard the Facebook group is a glossary of scary stories, and that the contributors seem to fall in the category of patients having the most side effects, so I kind of avoided it on purpose -I don't want to get (even more) discouraged. What is your experience? You don't have your medical story in your signature, how did you end up taking Nerlynx?
LaughingGull
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Welcome, Rowland7840! Thank you so much for sharing, and if you're willing, we're sure our members here would love to hear more about your own personal experience on Nerlynx. Personal stories and experiences are so helpful here!
The Mods
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Welcome Rowland and Gull. Thanks so much for joining this thread. I am really nervous about starting this drug so am so happy for any tips or suggestions the two of you can provide during this journey. Gull, I am glad to hear that you are still working and exercising. I am so afraid that I will be unable to work. I have worked through all of my treatments so far and only taking off time for Dr. appointments or treatments. Going this morning to get my port out and am so excited. To me that marks a completion of at least part of my journey to remain cancer free.
Rowland, I am a part of the Facebook group but agree most people are very negative but they have had some good suggestions and tips on what to eat and not to eat while taking Nerlynx. There also many people out there that have had limited or no side effects. The problem with that group is that when you post everyone that are your FB friends see your posts. I am not comfortable discussing bodily functions with all of my FB Friends LOL. This group is limited to people experiencing the same issues.
So it sounds like I should be prepared to start with the BRAT diet initially correct? Also, have either of you lost weight on this drug? I have gained over 30 pounds from the taxol/steriods that I am having a really difficult time losing. Do I try to diet while taking this drug? Though about joining weight watchers since finishing Herceptin.
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Just a quick note since I am at work. I wanted to send an update on my Nerlynx experience, but I wanted to reach at least the two-week mark before updating. Yesterday I started my third week on Nerlynx so it´s time for an update.
I am happy to report that I am doing well!
The big D hit me on day 5, and I had a pretty miserable week from day 5 to day 12. That being said, I worked full time all week, and I worked out (including jogging outdoors, although in a route that has bathrooms he he) three times. I had bad D, fatigue (I would say it was from the D, nothing compared to chemo induced fatigue), and a hint of nausea here and there (just a hint, not bad enough that I needed medication or even saltine crackers); I lived on bagels, white rice, bananas and electrolyte clear liquid from the pharmacy on those days. And lots of water, soups, cream of vegetable purees.
This week, if 100% is the way I was feeling before I started Nerlynx, I feel like I am at 75%, and improving every day. I am down to 2 Imodiums per day. I take the Nerlynx with my biggest meal of the day, which is a late lunch around 2pm, and in the hours after taking them, I have a couple urgent BMs, with loose stools, which in my book is not diarrhea. sorry if this is TMI.
That being said, during the bad week, I doubted a few times whether this would be worth it. Not just because of the misery at that time, but because you keep envisioning a couple of months (if not an entire year) of it. That thought was overwhelming. Now I totally understand people throwing the towel after a few weeks on Nerlynx. Then, to my surprise, I started feeling better every day.
For some reason, eating a good chunk of saltines or other crackers before going to bed helps me sleep at night.
And I lost a couple of pounds, which is not bad. I look great in skinny jeans today he he
I will keep updating,
LaughingGull
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Thanks so much for the update. I can handle a couple of weeks of bad if I know things are going to get better. I could use a couple of pounds. Also, I will keep to a similar diet as well. I will have my start date after my appointment on 5/1/19. I will also keep you updated. Thanks for going through this with me!!! Great to know you can give TMI if necessary.
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I dropped the Immodium to one pill only yesterday and I will ditch it today. Hopefully I will continue doing well. Will keep updating.
Best of luck
LaughingGull
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Yesterday, I finished three weeks in Nerlynx. I stopped the Immodium. I am also moving to my normal diet, with vegetables and fruit in it, rather than living on white rice, oatmeal, white bread and bananas, which is what I have been doing.
I am still not normal (like 75% normal I would say), but not bad. I also resumed swimming -in an abundance of caution, I had been avoiding it to prevent "accidents".
If by the one month mark I can tolerate veggies and fruit, on top of otherwise living my normal life, I will be happy. Will keep updating.
LaughingGull
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LaughingGull, I have appreciated these updates. While I'm not a *perfect* candidate for Nerlynx because I'm ER-, I understand I do qualify and will be talking to my MO about taking it when I finish Herceptin. I had the big D with the loading dose of Perjeta and into the second infusion, but then my body seemed to get used to it. It doesn't always happen but it can.
Hoping that you get to feeling 99.9% normal very soon!
Beesy
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LG - did you have issues with big D during chemo?
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hapa: I had D with each cycle of Taxotere + Herceptin + Perjeta, for a couple of day each time.
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Hello to some old friends and hopefully new ones. Well I got all my material from the MO today, gonna pick up Colestipol from pharmacy tomorrow. Not sure when the first Nerlynx package will arrive, but I think I'm ready. MO is having me take 4 instead of 6 (I'm only 130#). LG did you get the Colestipol too?
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Hi All,
I am new to this page, but saw mention of Nerlynx. Unfortunately I had a recurrence Jan 2018 in my lymph nodes, HER2+ and had one small tumor in my brain radiated. Finished chemo in July, Radiation in Oct and Herceptin Perjeta 2 weeks ago.
Since recurrence is my new reality, I am looking to stay NED from the neck down and Nerlynx is the only thing my Onc recommended. Question for anyone taking Nerlynx. I begin the drug next Wednesday and have heard the diarrhea is a real problem, struggled with it while on perjeta. I am having a conference call with a mentor through Puma pharmaceuticals this morning and will try to get some tips. Has anyone here made it through a year of treatment with Nerlynx? Any advise? My Onc didn't say anything about reduced dosage for weight, I am 125#.
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rwhite,
I haven't started Nerlynx yet, but will sometime after September, even though I'm not an "ideal" candidate because I'm ER-. I met with my oncologist yesterday and he is running a trial at MD Anderson on Nerlynx that used to include ER- ladies but no longer does. He is still okay with me taking it. I'm writing, though, because at MD Anderson, they start you out at a low dose and build you up to avoid the bad diarrhea. MAKES SO MUCH SENSE! Like you, I had pretty decent diarrhea with Perjeta, but my body finally adapted. Hopefully someone else will chime in here, but the women who've taken it for a year may not be on this thread. I'd encourage you to search for older Nerlynx threads to look for success stories. LaughingGull, above, seems to be handling it well! If I get a chance to look later today, I will and will get back to you.
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Hi ladies,
rwhite, very sorry you had a recurrence. Here is to you staying completely NED, neck down and neck up. Apparently Nerlynx crosses the blood brain barrier and has shown to reduce dramatically brain metastases.
Homemadesalsa, I am glad to see you again! I am 127 pounds and taking 6 pills, nobody told me about dose reduction based on weight. I did not get colestipol, they instructed me to take 4mg of loperamide (i.e. two pills of Immodium) three times a day and call them if I needed something stronger -and maybe that would be colestipol?. I started with two pills per day, went up to four, then went up to six (one day or two only) and then down to four, to two and finally one. Now I am down to 1 immodium pill per day, i.e. 2mg loperamide. I tried to eliminate that Imodium pill last week, but immediately had more diarrhea that I was comfortable with. So I will keep taking one and try again in a week or two.
I started Nerlynx a month ago, on April 3rd, and I am doing very well. I am working full time, and working out (running and/or swimming) five to seven hours a week, plus going out for movies and what not. Totally normal life, and my levels of energy are higher than they were while I was under Herceptin/Perjeta. Unless there is a big change, I am totally doing this!
rwhite (and all), please read the post by Zoziana in the other Nerlynx thread, I think I posted it above, she was in the clinical trial that looked at the prophylactic treatment of diarrhea while taking Nerlynx. By treating the diarrhea aggressively during the first month or two, mostly everybody did the entire year and they were doing very well. The average duration of the worst diarrhea was like a week or two. So please stock up on white rice and bananas and electrolytes drinks, be patient, ride out that first wave of side effects and hopefully you will be good again quickly.
Best to all,
LaughingGull
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Here is Zoziana's post. I found this very useful.
https://community.breastcancer.org/forum/80/topics/857091?page=11#post_5298519
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Positiveinohio, if you do not mind, I am curious why you preferred to continue Nerlynx after one year of H even for stage 1A as yours. Did you have neoadjuvant chemo? if yes, did get pCR or not?
I saw a few posts above saying ER- may not be ideal for this medication, then how about PR status?
Thanks in advance and you all have a wonderful weekend!
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Hello Again,
Thank you all for writing in. Wanted to get back to you following my conversation with a Nerlynx Mentor. I filled out the request on the Nerlynx web page and they set up a conference call. Spoke with a woman who completed Nerlynx in October. I appreciated her honesty about the ups and downs of D. Her experience was noisy stomach days 1-4. D kicked in day 5 and Imodium didn't touch it for her. First prescription was for Lomitol and it helped at first, but she said the game changer was Coleseitol ( a cholesterol drug with a side effect of binding you up). This worked very well until month 5. She had to go off the drug for 2 weeks and went down to 5 pills daily and D was manageable until she finished the year.
My Nerlynx prescription will be delivered this week and the mentor said they should have a voucher to cover 3 months prescription for anti D meds. This voucher covered her Coleseitol. She also gave me the phone number for the Nerlynx Nursing line 855-816-5421, the call center is open 24-7
After checking out the Facebook Nerlynx site, it seems like a good idea to start this drug slow and get my body used to it. Going to put in a call to my Onc Monday and request starting with 2 pills and adding one a week. I'm not sure he will go along with my plan since the study results are based on full dosage, but to me it is better to stay on the drug at a lower dosage than have to possibly take a break. Onc knows I am prone to D. Also going to ask if I can delay start until May 16 when we get back from a golf trip, can't imaging having the runs on the golf course!
Will let you know what Onc says and how treatment goes, Hang in there ladies and thank you for the support !!
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rwhite - when I talked to the pharacist at my cancer center (this is who helps you manage Nerlylnx for some reason) he said he starts people on 4 pills/day for 2 weeks and then if they are tolerating it okay has them go up to 5. He said the diarrhea seems to start at 5 pills for most people. Once 5 is tolerable then they bring you up to 6.
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All,
My wife is going to finish her one year HPs (3 more to go for total of 18) in early July. We are thinking about if nerlynx should be next. Just now I saw an article tiled "Neratinib Is Approved: Should We Reject It Anyway?"("https://www.ascopost.com/issues/december-25-2017/neratinib-is-approved-should-we-reject-it-anyway/), but it says:"
Recommend Extended Adjuvant Neratinib?
Should we recommend extended adjuvant neratinib therapy to patients? "No!" is the short answer. We lack evidence of a substantial benefit for the true endpoint (overall survival) or the best surrogate endpoint (distant disease–free survival) for a tolerable schedule. The 1.7% improvement in distant disease–free survival at 5 years in the entire population is not statistically significant. Further, the monetary cost to society is exorbitant, and the subjective tolerability of a year of neratinib therapy using prophylactic loperamide is not clearly established in a large, defined population.
Should one ever consider extended adjuvant neratinib therapy? In the very high-risk situation of a locally advanced HER2-positive, estrogen receptor–positive breast cancer with many positive nodes and involved margins of resection, with residual disease after neoadjuvant chemoimmunotherapy including pertuzumab, I personally would discuss extended adjuvant neratinib with the patient."
If you happened to (or not to) choose the Extended Agjuvant Nertinib, what were your reasons?
Thanks a lot
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Hi lilych,
I also read the article you are quoting, which by the way is a very good analysis, and I pursued this treatment because I fit exactly the description of the very high risk patient described above. Also I have a history of tolerating well drugs that are supposed to cause diarrhea. I am five weeks into the treament, and I haven't had any anti D meds since Thursday last week and I am doing well.
Did your wife have positive nodes? Did she have residual disease after neoadjuvant treatment? If it weren't for the significant amount of residual disease I had in my lymph nodes, I don't think I would have looked at this. And the insurance may not have approved it. Why are thinking of Nerlynx for her? Did she discuss Nerlynx with her MO?
When comparing the treatment and control groups, the benefit was 1.7% for the entire population. That was underwhelming. The results were much better for the hormone positive, node positive subgroup, but that is subgroup analysis, therefore not scientifically sound (there is no guarantee that the subgroups had identical characteristics because the randomization was not powered to compare subgroups); also, the study compared Herceptin against Herceptin + Nerlynx, therefore there is zero evidence that a patient that received an entire year of Herceptin + Perjeta will get any benefit.
LaughingGull
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Hi LaughingGull,
Thanks so much for your input, that is so valuable, I really appreciate that.
My wife did not have positive nodes before and after the neoadjuvant chemo treatment. However, she did have a residual tumor (4 mm, Grade 1, Ki-67 < 10% and ER > 90%) although all the doctors (BS, MOs and RO) considered it a good response and the residual was tiny and indolent. Actually the residual is the one which makes us concerned.
Back to early December when my wife just had the surgery, everybody was talking about Kadcyla because of the report from San Antonio Breast Cancer Symposium. We asked the MO a few times if my wife should also switch to Kadcyla and she said no. She had several reasons: (1) the report for Kadcyla is the comparison between Herceptin and Kadcyla , not between HP and Kadcyla. Perjeta is a good medication and my wife should continue; (2) it is easier to achieve pCR for ER-/HER2+. For my wife's residual, it was very strong ER and the hormonal treatment should take care of it and (3) the residual was tiny, low grade and indolent. After a few more HPs, we were still not very comfortable and we went for a second opinion from another MO, the new MO basically said something similar but she did tell us my wife could get some benefits from switching to Kadcyla. However, by that time, my wife was only a few HPs away from finishing the one year HPs and it was not very practical to switch.
As for nerlynx after one year HP, we asked the MO last week and she said still does not recommend it but we insist, she would not mind prescribing it. Of course we prefer to not be over-treated, but don't we need to try all the possible ways to minimize the risk?
Thanks so much again.
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Lily, I plan to give Nerlynx a shot and if SEs are tolerable and insurance will pay for it, I figure why not take it? I'm in the same boat as LG with residual cancer in my breast and nodes. My MO said for someone young and in good shape who could live another 40-50 years if not for breast cancer recurrence, he recommends trying it and worst case scenario I find it intolerable and quit. I tolerated chemo well and I'm having little issue with OS/AI so hopefully my luck holds.
I agree that the data on this drug is messy and the statistical validity is questionable, but that's the only data we have so we have to make our decisions on it. If this were presented to me as an experimental drug that in theory should be effective on my cancer but no data was available yet to prove it, I'd probably sign up for the study with the same strategy of trying it and quitting if it was intolerable. Best of luck with your decision
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Hello All,
My husband and I took a vacation before I start Nerlynx. I am waiting on the drug to be delivered as we speak. However, I think I am going to wait until tomorrow to start. Laughing thank you so much for all of the updates. It sounds like you are tolerating it well. I may be asking you a lot of questions in the next couple of weeks. I am also going to take Budesonide (?) instead of the Colestipol at least in the beginning. It is a drug used for colitis and has been successful to reduce the diarrhea. I will keep you updated but am nervous about starting.
Lilly, since I am triple positive, my oncologist says that Nerlynx is the new standard preventative protocol for me. Basically, he said that for my diagnosis, if I did nothing, I would have had a 30% chance of the cancer returning. With the Taxol, Herceptin, Radiation, and Arimidex,, I have reduced my recurrence chances to 12%. If I do the Nerlynx, my recurrence probability reduces to 8-9% and this also crosses the blood-line barrier into the brain. I think it is worth trying. I chose not to do the Perjeta after having a couple of opinions from different oncologists but am now being told it is standard protocol with the Herceptin and taxol for HER2+.
Welcome everyone to the group and I hope we can continue to address our issues and concerns with this drug to make this process more bearable.
Have a great day.
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Hapa, thank so much for sharing your thoughts. We are still having about two months to think about it.
Positiveinohio, you said it is "the new standard preventative protocol" because your tumor was ILC? We never heard the MO mentioned that. Did you do neoadjuvant chemo? did you have residual? Apparently you did not have any node involvement because of the stage 1a info, am I correct? Best of luck for taking nerlynx!!! If we decide to take it as well, we may come back and ask questions, thanks very much in advance.
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I just finished my Herceptin treatment on April 3rd as well. Now my oncologist wants me to start on Nerlynx in June. I am absolutely petrified about taking this drug and wonder if it is truly worth it. I am prone to colitis anyway and certainly don't want to have bowel issues all summer. I appreciate this thread and am hoping that I will receive the encouragement to take this drug. Thanks to everyone for their help.
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Bebe_2, adding your dx and treatments to profile and sharing may help answering your questions.
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hapa you are completely right; that is a very interesting way to put it. I will summarize the results of my two consultations at top hospitals .
#1, MSK. The MO I consulted wouldn't recommend Nerlynx, because the data was not 100% there. At the same time, that MO agreed that, biologically, it made total sense. She recommended that I joined the trial in which Puma was investigating the prophylactic treatment of diarrhea. When I looked into joining that trial, it was closed because they had already figured out the treatment of diarrhea, and the drug had been approved and was now standard of care. Then the MO at MSK went back to say that no, as a standard treatment, the data was not there, too much toxicity, the answer is no. Kadcyla out of the question bc has not been yet approved for early stage, and I was already at the tail end of my H+P treatment, and Kadcyla is chemo, so pretty toxic to take for an entire year without the data to compare the benefit directly against an entire year of H+P.
#2, NYU. Doctor consulted is director of breast oncology. Short conversation. For a healthy patient on the younger side, hormone positive and node positive, with residual disease after neoadjuvant treatment, Nerlynx makes sense, he would recommend it, and if he was the patient he would try it. Kadcyla out of the question for the same reasons they gave me at MSK.
So Lylych I understand your connundrum. In your case, your wife has residual disease, so it makes sense and it could be indicated, which is probably why that doctor will prescribe it if you insist. At the same time, of all the patients with residual disease, your wife belongs to the group with less risk, because she didn't have node involvement. And what if this treatment gives her a miserable year for negligible benefit?
I have the paper with the 5 year results, and a pdf copy of the SABCS poster, I can share them with anyone who wants to look at the numbers for Nerlynx.
Other than that I confirm that tomorrow I will start my 5 week in Nerlynx and I am perfectly fine. I finished Herceptin at end of Jan and I have more energy now than under Herceptin.
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What I recommend to those of you starting on Nerlynx is that you brace for serious tummy trouble, and prepare by having always handy foods that are easy to digest and dont contribute to the D. Because you will get hungry, even if you are miserable with D, and when you get hungry, the minute you feel a bit better you end up eating what is handy -and then you pay for it with pure misery. White toast or bagel, bananas, white rice, boiled chicken, boiled carrot and on and on. Pasta worked, too.
In a way it was good to eat all the pasta and bread I wanted and not gain weight
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