User Reviews for Nerlynx
Reviews may be edited to correct grammar/spelling, or to remove inappropriate language and content. Reviews that appear to be created by parties with a vested interest are not published.
For Breast Cancer, Adjuvant: “I hade a Stage 2 breast cancer diagnosis in Feb. 2020. I survived chemo, Double mastectomy And broken hip all during a nation wide 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 body but no where 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 no not much of a difference between the drug and placebo.”
For Breast Cancer, Adjuvant: “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.”
For Breast Cancer, Adjuvant: “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. 6 feet above is better than 6 feet under!”
For Breast Cancer, Adjuvant: “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 Immodium 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.”
For Breast Cancer, Adjuvant: “I have been on it 10 days. I felt nothing for the first 3 days and got so constipated from the the immodium 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 immodium 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.”
For Breast Cancer, Adjuvant: “My oncolgist put me on nerlynx. I was diagnosed with stage 4 breast cancer in 2017. I had a reucurrance in july 218 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 adament 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.”
For Breast Cancer, Adjuvant: “Was determined to continue with Nerlynx despite severe diarrhoea, nausea, vomiting and total loss of appetite. Most side effects stopped at the three month mark thankfully. Lost 10kg in that three months (needed to lose weight).”
Frequently asked questions
- What’s the difference between tucatinib and neratinib?
- When does diarrhea start when taking Nerlynx?
- Does Nerlynx cause hair loss?
- Can you drink alcohol with Nerlynx?
For Breast Cancer, Adjuvant: “Start In August 2018 at first don't have diarrhea but after 2 wks the diarrhea started 6 or 7 hrs after a dose. My dr prescribed loperamide and colestipol but the diarrhea still continues and my stomach aches and I have no appetite. After 4 weeks I see my oncologist take my BW and call me next day to stop treatment my liver was inflamed, I was not dehydrated cause I drink a lot fluids. I lost 3 lbs. I don't sleep during the night for the 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 chemo radiation and I know this therapy is for one year but I don't want damage my liver”
For Breast Cancer, Adjuvant: “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.”
For Breast Cancer, Adjuvant: “I am 9 months into Nerlynx and it is very uneventful just as Herceptin and Prejeta 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.”
For Breast Cancer, Adjuvant: “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?”
For Breast Cancer, Adjuvant: “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 3 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.”
For Breast Cancer, Adjuvant: “For the first 3 months it was brutal, now not so bad, I do have major muscle cramping all over. Sometimes wakes me up at night, the diarrhea stops around 3 mths but it’s to get there. I also get a lot of headaches. If it can cut my reoccurrence by half ! I am still in …9mths to go!!!”
For Breast Cancer, Adjuvant: “☆♡PART 2 neratinib review♡☆ -(1/30/18 Tuesday) Finally made it to the Oncologist office with a more than sanitary gas station bathroom stop. My husband had to check me in as I run to the closest bathroom. After 2-3 varying knocks start. I had the receptionist escort me to a hidden one. The nurse had to ask me questions through the door. I was ok enough to have blood drown. 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 lil malnutrition and almost 3 pound weight loss. -My oncologist started a new schedule of Loperamide. 2 capsules every 2 hours. -the first day was a little improvement. About 18 visit 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.”
For Breast Cancer, Adjuvant: “(2/11/18 Sunday), I'm still on the 2 every 2 hours and becoming more ecstatically distant from the bosses place. With an average of 4-6 times blessing my presences of the thinking room(bathroom) -in 2-3days I will try to cut back on the Loperamide to,two capsules every 4hrs.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.☆”
For Breast Cancer, Adjuvant: “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.”
This information is not intended to endorse any particular medication. While these reviews may be helpful, they are not a substitute for the expertise, knowledge and judgement of healthcare professionals.
More about Nerlynx (neratinib)
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