Nerlynx Approved by FDA to Treat Early-Stage, HER2-Positive BC
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Thanks Suburbs - The pharmacy people are great, they call every often and check on me. I called my MO and got anti- nausea medicine, it doesn't seem to help too much yet. I am still trying to figure out what I cane eat. I will try the bland dry toast diet this week and see if I feel better.
I keep hoping it will get easier as time goes on.
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mistyeyes
The first week was brutal for me. D. Issues and nausea. I had compazine left over from chemo and took it maybe 30 minutes after the nerlynx to try and ward off vomiting. I've been on nerlynx about a.month and what I've started doing is taking the meds right before bed. So I can sleep thru the side effects. My stomach is still a little full from dinner and so far it's been okay. The D is the worse for me along with fatigue Oh and the acne that of a teenager...honestly reminds me of chemo all over again.
Hang in there..throw everything you've got at this beast.
Hahlyn
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Hahlyn, I think you are on to something. Taking the nerlynx before bed seems like a good idea. I wonder if the trick is to just get through the first few weeks and then the side effects subside or you just get used to them and find workarounds. I can't wait to retire my pill box
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Hahlyn, I just read your response about taking it at night, right after I left a message with my doctor about changing to take it at night. I am taking this as a sign or something ....
I am also fatigued and sleep a lot every chance I can. The D is a lot better, Its the nausea and vomiting now. I would rather have D than this.
Does it seem to get better as time goes on?
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mistyeyes
The first week I was in a bad way. I thought no way could I continue with this. For me it was the D and the accidents at night while I was sleeping with the D. I was so Embarrassed I started sleeping on the couch in our family room I didn't want my husband to know. That alone made me want to give up. My mo took me off for a week and reduced my pill intake from 6 pills to 5 it made it a little better. Then as time went on I've figured out ways to deal with the side effects and the accidental D issues at night. Honestly it was brutal.
Just keep at it but reach out to your MO and ask if she can lower the dosage for now just to get you threw for now. We have to do whatever we can to keep this at bay.
Good luck. Stay Strong...
Hahlyn
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This study shows that starting loperamide in large doses at the very beginning and then tapering it down is very effective in controlling the side effects. I am interested in knowing if any of you who are really suffering used this protocol? This is what my MO is recommending and she has patients on Nerlynx who are doing fine. Sign me—Nervous
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The instructions I had when starting around New Year's said to take six of the over-the-counter loperamide a day when starting Nerlynx. I did try to load up on it but never got to more than four a day, and even that was giving me constipation issues so I had to balance it out at a lower level. I might have made a different choice if my D issues had been harder to cope with, but thru TCHP and now with Nerlynx, they have usually been confined to the morning and not "uncontrolled" feeling. So I can make do going into work late if I need to or adjustments like that.
When I started to have D issues recurring again after flu last month, and in March when traveling, I went back up to 2-4 loperamide a day.
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Good to know, misslil. Sounds like you are coping OK.
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I had a class today about nerlynx
May be I will start it next week
The side effects are very scary
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Hi all. I was doing fairly well avoiding the dreaded side effect but yesterday had a number of incidents. I had tried to back off the probiotics and toast which turned out not be a good idea for me. Anyway, back to normal today and hoping to get on top of the side effects.
Fatigue is definitely a problem. Someone said this feels like chemo. Yes, frankly, it does at times though in no way as rotten. I often wonder how much of my fatigue relates to just the normal part of recovery. The cancer took a while to be diagnosed and treated and I have to assume recovery should as well. The things we deal with!0 -
Hi Ladies,
This fatigue is truly something...does anyone have any tips on how to combat the fatigue. Are any of you taking vitamin B12 or anything. I am completely worn out when I get home from work. Barely have enough energy to make dinner so there has been a lot of take out. I feel like such a blob...I think it's starting to get on my husbands nerves. 🙁
Any tips would be appreciated..
Hahlyn
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Hahlyn, my tip is that your husband should make dinner.
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bareclaws..I know right...
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HI Ladies
Just seeing how everyone is doing. Hoping the side effects have started to subside a bit. Personally im still dealing with the acne of teenager and some fatigue. The D is manageable. Any who just checking in.
Hahlyn
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Same question here as Hahlyn.
I met with my MO today to consider getting on this drug but need to wait until after my prophylactic oophorectomy, which will be this summer. My final Herceptin treatment will be in early May. I had a cPR from TCHP prior to surgery. The MO hasn't had any patient try Nerlynx yet. Everyone is afraid of the D side effects. I am willing to try it and see how my body reacts. If it's too horrible, then I will discontinue, but figure, why not at least try?
Please keep posting if you are taking this drug. Thank you for any feedback! I'll keep checking this and other related threads in the meantime!
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I will start nerlynx Monday
I feel nervous about it I had hard time with diarrhea and hemorrhoids during chemo
My oncologist was proactive he gave me prescription for diarrhea nausea vomiting hemorrhoids...
I will post a feedback next week
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Hi all. I just received my third month supply of nerlynx in the mail. So far, I am dealing with the side effects with a daily high quality probiotic and more bread, bagels, and white rice than is good for me. I am not taking the loperamide which created worse problems. A bagel or a soft pretzel seem to slow down the side effects, not completely, but sufficiently so that I can get through the day. I'm still planning to change the time to take it to pm but want to discuss with my MO first as I am taking antibiotics and an AI.
I've had my moments when I fill up that pill box every week when I just want to stop all the pills. Until BC, I was not on any regular scripts. Then this week I learned of a colleague who just had a brain tumor diagnosed after beating back IDC with lumpectomy and radiation a few years ago. And then the fear takes over.I am going to hope for the best and tough it out.
Anyway, just checking in. Hang in there everybody.
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Suburbs, my first month supply arrives tomorrow, start it on May 1. Interesting that you are doing it w/o the loperamide. I’m supposed to start with 12 loperamide per day the first two weeks! No way. Even at my worst during chemo I think I took two in one day. I’m all about the carbs so will be following your lead with bread, bagels, etc. I keep telling everyone in the family to count me out for the month of May at the very least.They do NOT understand the fear and uncertainty that I'm feeling.
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Hey bareclaws. Good luck starting out. I'm working now to return to a more balanced diet. I'm adding lots more protein and it's working. I've avoided red meat since my diagnosis. Last night, I had a proper 5 oz steak with broccoli and roasted sweet potatoes. I woke up feeling great. I'm still fatigued towards the end of the day but it's getting easier. The bagel and toast have been retired. Hope you get the magic formula and can tolerate the nerlynx. Beating back that nasty HER2 monster day by day
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Thank you, Suburbs.
Probiotics have been mentioned. I went to Natural Grocers today and there’s a whole freakin wall/refrigerator case of probiotic supplements. I walked away and bought a quart of Bulgarian yogurt instead. I eat a lot of probiotic foods already. Not sure where to start with the supplements. Any suggestions?
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Hi bareclaws. Try the probiotics in the morning and then wait an hour and have breakfast with the nerlynx. I haven't switched to trying night time yet. Good luck. Keep us posted
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I'm still trying to figure out who has Nerlynx prescribed for them. Or who it's recommended for, I guess.
At first I thought it was primarily the hormone negative people who don't have further treatment. Then I thought it was people who were diagnosed at a later stage or with nodal involvement. Now I'm wondering if it's for those who couldn't complete treatment or didn't have a great response to treatment.
Are there guidelines that I could find somewhere?
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As far as I recall reading, the FDA approval for Nerlynx didn't focus on any particular patient group so it's up to the doctor and patient to see if it seems helpful for you based on your case and their assessment of the Nerlynx studies.
In my case, I was HER+ ER+ PR-, node negative, & had good but not complete results from neo-adjuvant TCHP completed in Dec 2016. This was after a previous BC incident in 2008 with DCIS, and a gyn pre-cancer in between, possibly as a SE of tamoxifen. I opted to do the Nerlynx to mitigate risk of recurrence given my history.
edit: above, I meant any particular sub-group within HER+. not any group at all.
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I don’t eat until noon, but will try the probiotics ahead of that. My question is, what brand/type of probiotics? Too many choices. I have no idea.
I was triple positive on one side, ER and PR negative on the other side, not a complete response to chemo, node negative as far as we know but there was a shadow under breast bone that could be a positive node that’s inaccessible. Also three types of cancer between the two breasts. I need to throw everything at this. So, chemo, surgery, chemo again, radiation, herceptin, AIs, now Nerlynx. If it comes back, there’s nothing else I could have done.
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bareclaws, try www.florajen.com which has a location finder. I'm taking florajen3 from the refrigerator at the pharmacy of my local Walgreens. There are many brands. You might ask your care team if they recommend any one brand
Notverybrave, nerlynx was approved for extended adjuvant therapy for early stage HER2 + breast cancer after initial treatment which includes trastuzumab a/k/a Herceptin. I had a complete PCR after neoadjuvant TCHP (brutal regimen) but still wanted to throw the book at the demon BC.
www.fda.gov/Drugs/InformationOnDrugs/ucm568138.htm
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Thanks for the responses, ladies. My MO has not mentioned it and I was a little leery of bringing it up. I, too, did TCHP and so much wish that I could just not do anything else at this point.
I quit Tamoxifen due to a number of SE's - some of which were very concerning to my wellbeing. I'm currently in limbo with other endocrine therapies. I have an area of probably fat necrosis behind the nipple on the cancer side. I have a cyst on one ovary and an endometrium that measures 1 cm thick. I'm pretty tired of worrying about so many things.
I'd like to move on. I'd also like to never have to deal with BC again.
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I thought Neratinib was FDA approved for HER2 positive BC. I have met with the Nurse Practitioner instead of my Oncologist for my last two rounds of herceptin and perjeta, I brought it up to her three weeks she said she would look into it ago and again today (she didn't look into it!.) Hopefully I get an answer when I go for my next infusion. I also had one of the ladies at the front desk run Nerlynx and Neratinib in their system and nothing came up meaning they don't prescribe it or they haven't yet. I still think its pretty new but I want some information about it if it does help HER2 positive breast cancer.
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KCMC - it is approved for HER2 positive cancer who completed herceptin within the previous two years since around July last year.
The study on which it was approved released 5 year data around December last year. The data to date indicates it provides most benefit to the sub-groups that are triple positive, those who commenced within 6 months of completing herceptin and those with a lot of positive nodes. Nobody knows if that trend will continue as more data is obtained. The next lot of new data is expected to be released in July.
In practice some oncologists will prescribe it to anyone that meets the her 2 positive, finished herceptin within 2 years guidelines, others will only prescribe to those with lots of positive nodes or who didn’t have a complete response to chemo and are deemed high risk of recurrence, others still have never heard of it.
It’s main side effect is gastrointestinal effects like diarrhoea, heartburn, abdominal discomfort and most people get this for the first month and it improves after that. A lot of oncologists don’t recommend it as they say the side effects outweigh the benefit and there is not enough evidence to demonstrate what the long term benefit, if any, will be.
It is the easiest of all the treatments I have had but there seems to be some people who just can’t manage the drug. I am at high risk of recurrence being stage 3c and am getting the drug via a trial as it is not approved in my country.0 -
xxyzed, thank you so much for explaining it. Not sure if the Oncologist will recommend it for my use. I am Triple Positive, Stage IIA, no node involvement. I just feel now is the time to throw everything at this beast. I only get this one chance. I was lucky to add Perjeta to my Herceptin after TCHP was done. Also it is good to hear your side effects are manageable. A lot of times we only hear the negative side effects.
Now I can go in and talk to the Oncologist well informed thanks to you! Much appreciated.
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