Nerlynx for Breast Cancer, Adjuvant User Reviews

• Pep...
• Taken for 1 to 6 months
• January 30, 2020

"I started this medicine 3 months ago and have had uncontrollable diarrhea. It starts about an hour after I take it. Anywhere from 10-12 bouts. I have also soiled myself about 10 times in my sleep. I'm on Colestipol, Lomotil, and Immodium. They have even backed me down from 6 to 4 pills with no relief. I'm done with this medicine. I have no quality of life."

• Don...
• August 20, 2021

"I had a Stage 2 breast cancer diagnosis in Feb. 2020. I survived chemo, double mastectomy, and broken hip all during a nationwide Covid outbreak. Every visit, surgery, and infusion were all done alone… no family allowed to visit. I thought that was hard. I started Nerlynx on August 1, 2021. I have never been as sick as this in my life. Chemo was hard on my body, but nowhere near as hard as Nerlynx. My oncologist has suspended me off it for a week. I have decided I am DONE. No quality of life and not much of a difference between the drug and placebo."

• Ano...
• Taken for 6 months to 1 year
• October 19, 2021

"Just completed my year with no dose reduction needed. Yes, I had some episodes of soiling myself, yes, the fatigue wasn't the best. I also had bladder pain that needed morphine and a clot in my inferior vena cava, which was yellow card reported (UK). However, I would do my year again in a heartbeat. I have arthralgia from letrozole and have another 8 years on it. Again, I'll just keep doing what I can. The feeling of knowing I'm giving myself even a tiny bit of risk reduction gives me the determination to pick myself up and keep going. Six feet above is better than six feet under!"

• Pep...
• Taken for 1 to 6 months
• January 16, 2020

"I'm coming up on the end of my 2nd month of Nerlynx. I am taking Lomotil, 2 pills, 3 times daily, Colestipol, twice a day, and Imodium, up to 8 pills in 24 hours. I am still having up to 12 bouts of diarrhea a day. This is ridiculous that it's affecting my quality of life so much. I've even soiled myself twice in my sleep. I didn't have this much trouble while on chemotherapy. I'm not sure the possible 3% help is worth it."

• Ann...
• Taken for 6 months to 1 year
• November 22, 2020

"I am 9 months into Nerlynx, and it is very uneventful, just as Herceptin and Perjeta infusions were. I am able to work, exercise daily, and do everything that I love. I get diarrhea 0-2 times per month, and it doesn't interfere with my life. I was also put into menopause and take Anastrozole with no issues. I would recommend trying it and giving it a chance. If it is not for you, you can stop. I wanted to do everything to reduce my recurrence rate and protect my brain."

• Mon...
• March 13, 2021

"I have been on it for 10 days. I felt nothing for the first 3 days and got so constipated from the Imodium that was prescribed that I had to go on laxatives. I thought perhaps taking it with my morning smoothie (fortified with calcium) was interfering with it, the pharmacist agreed, and it was! As soon as I switched to taking it with lunch, the diarrhea started that night. The next day it stopped, so I stopped the Imodium and was fine for three days. Then I had duck for dinner, and I was so sick with diarrhea that night! For the past three days, I have had no meat and no grease and have had no diarrhea. I am starting to believe it is influenced by what you eat. My fingers are crossed! Anyone else agree? Other than that, I am fatigued, and this depresses me."

• Anonymous
• September 3, 2019

"My oncologist put me on Nerlynx. I was diagnosed with stage 4 breast cancer in 2017. I had a recurrence in July 2018 when I found a huge lump on my neck. I started IV infusions with Kadcyla every 3 weeks. The cancer went to my brain. I was disappointed to find out after the fact that Kadcyla does not permeate to the brain! My oncologist was adamant that I start Nerlynx. He started me on 3 daily. I took it for one day.... severe diarrhea, stomach pain, dizzy, fatigue, crying, angry.... I will never take this drug again! Let alone it causes severe liver damage and heart damage! I will continue CyberKnife radiation."

• Nan...
• Taken for 1 to 6 months
• September 27, 2018

"Start in August 2018. At first, I didn't have diarrhea, but after 2 weeks, the diarrhea started 6 or 7 hours after a dose. My doctor prescribed loperamide and colestipol, but the diarrhea still continues, and my stomach aches, and I have no appetite. After 4 weeks, I saw my oncologist, took my blood work, and they called me the next day to stop treatment, my liver was inflamed. I was not dehydrated because I drink a lot of fluids. I lost 3 lbs. I don't sleep during the night from running to the bathroom all the time now. For some patients, it is good, but for me, it is not. I choose quality of life now. I had chemotherapy and radiation, and I know this therapy is for one year, but I don't want to damage my liver."

• Tin...
• Taken for less than 1 month
• July 15, 2018

"The jury is still out for me on this new adjuvant treatment. I finished Herceptin and Perjeta on June 28th and started Nerlynx July 7. The first 24 hours were manageable with diarrhea, but we’ve been off to the races since then. 12-15 times a day in the restroom. I’m taking the prescription strength Imodium per the directions, but I see many here take it every two hours. I’m calling the oncologist today to ask if I can take it that frequently because if not, I will have to stop taking Nerlynx. It is disrupting my life, and the nausea and belching aren’t helping either."

• Mis...
• Taken for 1 to 6 months
• October 18, 2018

"Was determined to continue with Nerlynx despite severe diarrhea, nausea, vomiting, and total loss of appetite. Most side effects stopped at the three-month mark, thankfully. Lost 10 kg in that three months (needed to lose weight)."

• Luc...
• Taken for 6 months to 1 year
• June 29, 2023

"Feeling extremely lucky as I've been on Nerlynx for almost a year (120 mg/day) and never experienced any diarrhea. BMs are same as always - perfect poops. Side effects include random leg cramps (which are likely caused by dehydration rather than Rx), occasional light bloody nose, dry skin, and super soft, peeling, ridged nails. Oh, and bone loss... rapidly approaching osteoporosis at 56. I know my experience is not the norm, and my heart goes out to those afflicted with incessant diarrhea, but I thought I might give others who are hesitant some hope. I'm also on Letrozole for the next *gulp* 5-10 years, and that kinda freaks me out... blocking every last drop of estrogen has exacerbated the usual effects of aging and loss of femininity. Exercise and good nutrition are the best defense, wish I'd started sooner."

• col...
• Taken for less than 1 month
• January 21, 2020

"I took my first dose of Nerlynx today about 3 hours ago and am terrified as I read more and more about the horrors of this drug. My stomach is cramping, but no bathroom yet. My onc has me taking 2 loperamides at a time, three times per day. He is starting me off at 1, 40 mg tablet per day for the first week and is easing me into the full dose very slowly, so maybe I will be okay? What is the dosing everyone is taking, and are there any good stories out there from people able to complete the year protocol?"

• que...
• February 2, 2018

"I have taken Nerlynx (Neratinib) for 1 week. Today, the 7th day, I'm going back to the Imodium every 6 hrs. Within the first 8 hours, my stomach was cramping, diarrhea, and nauseous. After the 3rd day of diarrhea more than 15 times a day, my oncologist increased the Imodium to every 2 hours. I'm still tired but have high hopes in continuing for the full 12 months."

• Lin...
• Taken for 1 to 6 months
• November 1, 2021

"For the first 3 months, it was brutal, now, not so bad. I do have major muscle cramping all over. Sometimes it wakes me up at night. The diarrhea stops around 3 months, but it’s to get there. I also get a lot of headaches. If it can cut my recurrence by half! I am still in… 9 months to go!!!"

• Que...
• Taken for less than 1 month
• February 11, 2018

"(2/11/18 Sunday), I'm still on the 2 every 2 hours and becoming more ecstatically distant from the boss's place. With an average of 4-6 times blessing my presence in the thinking room (bathroom) - in 2-3 days I will try to cut back on the Loperamide to two capsules every 4 hrs. In my opinion: Chemo, radiation, and surgery on your breast are hard. The diarrhea can be managed. Just don't do like me and not want to bother the oncologist on the weekend. I got lucky and wasn't dehydrated. Make sure to seek help if you are frequenting the stink room more than your doctor says. Good luck! I will continue and finish the many base coats of polish called breast cancer until I finish with my high shine gel top coat to lock it up and continue defying life while being pretty.☆"

• Mam...
• Taken for less than 1 month
• March 18, 2023

"I finished 6 rounds of TC chemo with Herceptin and Perjeta, 6 weeks of radiation and now I’m 3 days in starting at 3 pills (40mg) of Nerlynx and my backside is not having it! Started with sharp abdomen pain on day one and now nonstop diarrhea. I’m done! This is worse than chemo diarrhea."

• Que...
• February 11, 2018

"☆♡PART 2 Neratinib review♡☆ -(1/30/18 Tuesday) Finally made it to the oncologist's office with a more than sanitary gas station bathroom stop. My husband had to check me in as I ran to the closest bathroom. After 2-3 varying knocks started. I had the receptionist escort me to a hidden one. The nurse had to ask me questions through the door. I was okay enough to have blood drawn. The doctor was concerned about dehydration. I spent about 1 1/2 hours in the bathroom. After about 10 minutes, I would get a break for about 7-9 minutes. - We were all in shock as I wasn't dehydrated! A little malnutrition and almost 3 pounds of weight loss. - My oncologist started a new schedule of Loperamide. 2 capsules every 2 hours. - The first day was a little improvement. About 18 visits to what I started to call home (bathroom) (1/31/18 Wednesday) - (Thursday 2/1/18) Finally some relief. Down to about 12 a day with the new schedule of Loperamide. Still not comfortable leaving the house."

• Sto...
• April 25, 2021

"I had stage 2 breast cancer her+ size 3cm in late 2017. After 6 chemos - 4 strong drugs reduced to 1cm, surgery, 6 weeks rad., I started Nerlynx. 6 pills a day for 12 months. It started out ok, little stomach ache but by the 3rd week I was in severe stomach pain, diarrhea daily. Imodium helped some but after 2 months., didn’t help. A stronger Imodium prescription ate up my stomach lining. I struggled through determined not to go through cancer again. Five months through I had to stop for 3 weeks before - 3 weeks after for open heart surgery at young age 65. Starting back on Nerlynx I convinced Dr to go from 6 to 5 pills a day. At the end of 11 months I had it. It was impossible to eat anything without losing it. My stomach and bowels were raw. I only survived this long because I took a teaspoon of baking soda in glass of water everyday. Lost a lot of weight. My Dr told me I was the longest lasting patient to try Nerlynx. I hope it was worth it. Now 2021 and still cancer free. Fingers crossed."

• Spa...
• Taken for 1 to 6 months
• June 22, 2023

"I was diagnosed ER+,HER2+ in 2021. Had mastectomy, chemo, neo-adjuvent and six weeks of radiation. My oncologist then prescribed Nerlynx with Immodium and within 3 days the diarhrea and cramping started. It was worse than prepping for a colonoscopy! What really got me was I developed a weird "rash." My arms began itching from shoulder to wrist. No bumps or welts, but felt like dozens of mosquitos biting all at once, both painful from feeling the " bite" and the constant non-stop itching. My Dr. prescribed Gabapentin with an increasing dose to help but I couldn't tolerate the 1st 100mg dose of this. I stopped the Nerlynx but it took almost 3 months for the "rash" to begin to abate. After some sleuthing, I discovered that this is an actual condition that can be brought on by some cancer drugs, and Nerlynx was on the list. So no thank you! I would rather have peace and joy in my life, not an ever-increasing amount of drugs to combat the effects of the other drugs, etc., etc."

• Pos...
• Taken for 1 to 6 months
• September 25, 2024

"I have now been on Nerlynx for nearly 2 months. I started with 3 tablets a day, increasing to 4, and then 5. I am now on the second day of the full dose of 6 tablets. I have suffered with diarrhea for the past year, since my first cycle of chemotherapy, which I had to stop due to chemo toxicity. I was absolutely terrified about having even more diarrhea on this medication. In fact, my existing diarrhea is a little worse, but nowhere near as bad as I had feared. At its worst, I have had 7 episodes in one day, but on other days only 1 or 2. Loperamide gives me diarrhea, so I am on 15 mg codeine up to 4 times a day. I have had a couple of nosebleeds, I have a dry mouth, and my nails are a bit flaky. I have also had a couple of headaches since going up to full dose, and I am very tired all the time. However, it is not as bad as I had feared."

• Wor...
• Taken for 1 to 6 months
• March 2, 2024

"Started on low dosage from mid-Jan, minor diarrhea on 2/3 days due to increased dosage and a bit more severe diarrhea after heavy meals. Finger-crossed for remaining days on Nerlynx"