Nerlynx Approved by FDA to Treat Early-Stage, HER2-Positive BC
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I finally have the insurance coverage (Medicare Part D) authorized again and the manufacturer will be covering the high deductible for the rest of the year on Nerlynx.
I'm near the end of my 2nd month on Nerlynx. Still have problems with D, but easier to control, However fatigue usually follows for several days. I've also started having a runny nose like when on herceptin. Anyone else have that problem while on this drug?
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Hi Mardea15. Yes, I am experiencing similar symptoms - runny nose like Herceptin and fatigue. Also, the side effects from Arimidex seem worse - my feet feel like I am years older when I wake up but that goes away once I get moving. I stopped taking the loperamide a few weeks ago. It's all manageable. Good to hear that you have the costs covered.
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Ladies
I too have the runny nose like on Herceptin. Also fatigue along with D issues. However, I'm doing my best to control it. I'm on my 3rd week of nerylnx. Is anyone else having to do blood draws? I've been scheduled for one this week.
Hahlyn
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I start on the 24th, but I do know I will have blood testing periodically because they keep track of the liver.
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Thanks mistyeyes! Good luck with your start on March 24.
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I started yesterday, March 18th. So far, so good, but it's only Day 2. I do have a question though- was anyone else warned to not eat grapefruit or blood oranges while taking Nerlynx? I know grapefruit can be problematic with other meds, but the only other med I take is Aromasin and never was told of any food interactions with that. I'm not a fan of grapefruit, but after hearing three people from my mail order pharmacy tell me to avoid it, and then reading my prescription label and reading “AVOID GRAPEFRUIT", all I want now is a damn grapefruit LOL0
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Hi Elaine,
My daughter was on it for a week. No matter what we did we couldnt control the diarrhea. It you take too much Imodium, you get constipated. The specialist at CVS said about 90% get diarrhea.
She stopped taking it, but going to see the Oncologist tomorrow. Perhaps try a lesser amount.
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OhHeyDee- I had to laugh, because I was told to stay away from grapefruit and read about it also; like you grapefruit popped in my head and I want a grapefruit!!!
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OhHetyitsDee
Yes I was told to stay away from grapefruit also something about chewing gum...I hadn't heard about blood orange.
Is anyone else getting nose sores? I have a runny nose like when I was on Herceptin. The sore in my nose hurts...just another side effect I guess.
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I've had some mouth sores that didn't last long. My nose seems to get sore but I think mostly because it runs a lot. The runny nose is annoying. It seems to get worse particularly when I'm somewhere without a Kleenex handy!
My MO has me coming in to see her every 4 weeks, and that includes a blood draw for lab work. So far, all labs have been normal. But I did get another IV infusion on Mon as had the big D again for the previous 3 days. I only get concerned if it's in the double digits for more than a couple days. Now I'm 3 days without & I'm hoping that stays gone.
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Mardea15, good to hear things are improving. So far, I am tolerating the nerlynx with minimal side effects. I hope you get there too. All the best
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I started a week ago and have uncontrolled disreah, throwing u 3ries last night , bloody nose. I started to get ‘susicius’ why II was getting so much attention. Well in most countries the drug is it and will not be approved. 127,000per year is the cost for a 2.6% less chance ...... and results punished only for 2 years. Next results 2020. Read about 25 articles and stopping today. Not for me at this stage whe I try to rebuild myself. Interesting that it does not talk abut chemo I tablets form. Cannot blame the oncologist because they have to follow protocol. Do your home wor
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read the facts.
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what outcomes 2 years and 2.6% improvent. Only this US they approve adrug that creates all kind If issues and costs 126,000 pp per year and Has No significant results. The grouos Are Not even truly targeted. Even oncologist Ave doubt Unless You have multiple lymphnotes positive her2 plus many oncologists won’t give it to you. Check what they say in other countries about this drug. Be careful what you put your body through.
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Lidwein, I’m sorry that you suffered so much with Nerlynx. Did you start with prophylactic loperamide (Imodium) to handle the diarrhea side effect? My MO initially did not want to prescribe Nerlynx, but as more studies have become available, she is doing it. She has several patients taking it and they are doing OK. Side effects are worse at the beginning of the course of treatment.
I admit that 2.6 % benefit sounds small, but if I’m one of those who doesn’t get brain cancer, it’s pretty big. Strongly Her2 positive, hormone negative and with a suspicious shadow where an inaccessible lymph node is located. I’m chasing funding for this drug, and starting to take it May 1.
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I started on the 24th, Sat and Sun I was fine - felt no difference. Sunday night the diarrhea started and it was all night and the next morning. It slowed down by mid day. This does not bother me so much and it is a little better today. I am taking the Imodium as told to. I am nauseous and that is the worst for me. I was never nauseous even with taking chemo. I took off from work yesterday, but today I am here and vomited once and felt better. I hope that it is it for the day.
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Hi all. I completed a month of nerlynx. I have had my share of gastric difficulties. The loperamide caused more problems than it was worth. Yes, I have had a bit of nausea as well. I finally think I have got this with the elimination of the loperamide and the addition of a probiotic- florajen3. It's refrigerated. I found it at a Walgreens pharmacy. After 3 days on it, it's made a big difference. I take one in the morning before food, wait an hour and then take the nerlynx with a smoothie - organic protein powder (Orgain or Garden of life) and frozen fruit - strawberries, blueberries, and or cranberries. Finally, I think I have got this under control.
This drug is not like Herceptin. I think it wreaks havoc on the gut health. I feel a great sense of relief that I can continue. The percentages are worth it to me. I will do whatever it takes to avoid a recurrence. Your mileage may vary. Do what you must for you.
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Lidwien - I see these are your only posts since one entry in 2015. Please go to "my profile" and add your diagnosis and treatment so we can see where you are in the process. Certainly there may be some bad issues, but many people want to fight fire with fire. Setting off alarms doesn't really help those ladies who have done their research and are willing to move forward with this drug in hopes or remittance.
Good luck to all of you ladies. I'm too far past the original Herceptin infusions to qualify but I'm rooting for you.
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It's been a week of taking Nerlynx in a clinical trial. I have had some D, nausea and stomach pain but it's manageable. I am taking colestipal twice daily in the trial and loperamide as needed which has been 3 times. I also take a probiotic but I am going to try the one Suburbs takes. Like many of you taking Nerlynx, I am grateful to be able to get this drug. A few stomach issues are nothing compared to the cancer spreadingfor me. My oncologist told me the benefit for triple positive stage 3 node involvement is likely higher than 2.6%.
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Hi Yogagirl260. My BFF did the research for probiotics. I have to admit that I had taken one off the shelf with no improvements some time ago. I know very little on the topic. Perhaps the refrigeration makes one probiotic more efficient than another. For sure it makes them more expensive. Hang in there. It gets better.
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My nausea is a little better and the diarrhea is a little better. I feel confident that it will all get better as time goes on. I am really tired, almost like chemo fatigue. I am off work tomorrow so I will see if it is better, maybe my day at work is taking everything out of me and my days off I will feel more alive.
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I'm through my third month on Nerlynx. Still no really bad situations but fatigue and occasional D morning episodes.
The D goes away for periods but seems to come back if I'm physically stressed. Or at least that's my guess after finding it came back when I had extended flu last month, and then again this month when I was traveling for a week.
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Ugh! D coming back while traveling is the worst!
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thanks Suburbs. Yes the probiotic was expensive. The naturopath at the health food store I got it at in Canada also suggested putting Kefir ( it's like liquid cultured yogurt) into my smoothies each morning to maximize the good bacteria in my gut. I will try it tomorrow.
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Hello
Well just about a month almost on the nerlynx. Still dealing with D issues. Feels like I'm on chemo again regarding the D. I have cut back on the immodium at doctors request, but feel some days I need to take it 3x rather than 2times. Today in southern California it was a little warm and I had to go out into the field for work. Felt like was going to faint I was dehydrated I will admit just like chemo on this pill I don't drink much water well much of anything. Realized today I will have to force myself so I can be hydrated. Fatigue is also an issue. But im chugging along despite these issues. Still hoping things get better.
Happy Easter Ladies!
Hahlyn
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Suburbs, thank you for your response on 3/23.
Haven't been back to the site since then as I've been sick for more than a week. First with some sort of viral upper respiratory infection, then with a bacterial secondary infection for which I'm now on antibiotics. The antibiotics have increased the diarrhea (from Nerlynx)which I had finally, relatively under control.
I find I get very sick with high temps with any viral infection ever since chemo. This is not from Nerlynx as this happened before I was on it. I'm just wondering if others have this issue.
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Hi all,
Just joining in. One month in. D on and off. I agree with bearclaws that if this will keep away the brain Mets, I’m down. First blood draw tomorrow. Check ups once a week in person. Mostly fatigued & lack of appetite
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Hi everybody. Hahlyn, I too struggle with the water and fatigue. No doubt it's even more important to drink a lot of water on this therapy.
Mardea15, I hope you feel better soon. I am taking antibiotics for a pesky wound site that has been plaguing me. The probiotics really helped when dealing with the side effects of nerlynx plus antibiotics.
Asher, I hear you. The possibility of crossing the blood brain barrier and preventing brain metastasis was the big draw. My MO was initially ambivalent but this was the main factor I stressed when we came to an agreement to move forward with it. Honestly, with the 2% improvement from the clinical trial and the side effects, I sometimes feel like we are guinea pigs or pioneers. Pick your poison.
Herceptin was approved for metastatic BC in 1998 and early BC in 2006. Perjeta was approved for early breast cancer in 2013. Now we have nerlynx. I will have done all three. Add the anastrozole and I feel like I have aged 10 years. I don't have to tell this group what a fight it was to get here physically, mentally and financially. My hope is that this trifecta will kick that nasty HER2+ gremlin to the curb and when this treatment is over, I can be at peace knowing I did my best. Apologies for the long post.0 -
Nerlynx is kicking my butt! This is worse than chemo for me. I am nauseous and vomiting on top of the big D. It has only been a week. I hope that this will get better. If it doesn't I really don't know if I can keep it up.
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mistyeyes, ugh. No fun. Have you contacted your MO? The specialty pharmacy had a 24 hour hotline. Do you have any anti-nausea meds left over from chemo or maybe your MO can call in a script. I'm on week 6 and everyday gets better but it was tricky. I have been eating bland dry toast which helped with the nausea and reflux. Hang in there. Hope it gets better.
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