Nerlynx Approved by FDA to Treat Early-Stage, HER2-Positive BC
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Misslil I hope you recover quickly - that flu on top of everything else just sucks.
Wow! This drug is showing me how really different a response can be. I am so surprised at my response. I guess it’s like how some people have had horrible experience with AIs but I’ve been stiff but otherwise fine.
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hydeparkgal, I'm on my second time around with taking Nerlynx. The first time I took it for 16 days, then stopped for close to one month due to side effects of the big D, as well as nausea & vomiting. I was in the ER twice, once being on Christmas Day, & then again just before New Years. Problems for me always happen on weekends or holidays! It was really hard for me to start again but my MO really thought I should as she thinks it could be a real benefit for me, so here I am again and now past one whole month.
Anyway, there were several things I learned from that first experience. 1. Imodium, for me, was practically useless by itself. Now I'm takin Imodium 2 tabs (4mg), & 1 Lomotil as soon as I get up in the morning & last thing at night again. I also take Lomotil 1 tab each time I have a liq stool during the day (not to exceed 8 per day). 2. I found that water will stir things up & go right through me. Better to only drink small sips of Gatorade, Powerade or Pedialyte for fluids. I also use Premium Shakes to get pills down, for extra fluids & protein. Most of the time I do pretty well with that regimen. However, my MO told me that anytime I feel like I'm not getting enough fluids or have 8-10 diarrhea episodes in one day to come into clinic for IV fluids. I did that Mon & Tues this week. Made me feel a whole lot better & will continue to see how it goes.
I didn't have near as many issues with SEs when on TCHP, but none of those drugs cross the blood brain barrier whereas Nerlynx does. And it's the only drug I know of, for her2+++ that will cross that barrier. That is a huge motivator for me to continue.
After everything you've been through you sound exhausted. You have up until 2 years after completing herceptin to start this drug. I started close to that 2 year point so had a chance to recuperate from TCHP, multiple surgeries, etc. Maybe you just need some time to recuperate from the treatment you already had before starting/ continuing something new.
Whatever you decide to do, I wish you the best & remember we're here for you.
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Hi bareclaws, I wanted to give you an update on the ongoing insurance saga! I spoke with "PUMA Patient Lynx" case manager again today as I now have only 3 days of medication left! They have arranged with a specialty pharmacy to send out a "bridge supply" or 21 days of Nerlynx pills while the insurance details are worked out. I will get those pills tomorrow! Yeah!!! At least I won't run out right away.
In the meantime, the pharmacy person in the oncology clinic is appealing a denial from my Medicare Part D Ins carrier (Humana Walmart). So, even though it was approved last time as medically necessary, now 3 months later we are going through the same process of denials & expedited appeals all over again! Not sure if this is going to be a repeat every 3 months, or what! Must be job security for the insurance company to make people go through these same hassles multiple times. At the same time that is going on, PUMA Pt Lynx Rep told me they're also working on getting copay assistance from another source.
So, once they got my application, I haven't had to do anything but call & let them know I was going to run out of pills & then have them keep me in the loop as to what is going on. They're still taking care of everything so far. I'll keep you posted as I find out more. I assume this will be a similar process for other people on Medicare who have Part D. Hope all is going well with you
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thanks for the update. I got my paperwork from PAF today so can call pharmacy on Monday and get this ball rolling
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Hello Ladies
Well I've been on the nerlynx now for 5 days. For the first 3 days I was getting worried because I didnt have a bowel movement. Spoke to soon. That afternoon the big D hit and had been ongoing ever since. I told my oncologist I would.need the lomotil but she said start with the immodium. It's doing nothing to keep the D away. Honestly I can drink water and it will send me to hills running. Also my appetite has gone. I feel like I am on TCHP chemo again. The perjeta in that combo really did me in. I had D from the time I started in Sept to January when I finished. I just didn't think this would be that bad. At least with the TCHP the treatment was every 3 weeks so eventhough I had D everyday it would start to taper off week #2 but taking these pills daily I just dont see me getting a reprieve. I'm so bummed out because I think im going to have to throw in the towel.
Idk maybe I should try and take the pill in the afternoon or closer to bed time, rather than in the morning. I notice in the morning I have a bit of an appetite but the rest of the day no. And when I feel I'm hungry I only eat a bit then immediately im in the restroom. All night. Almost afraid to fall asleep because I may have an accident during the night. WTH! Also I had some left over lomotil and I took some last night I was desperate but the D is still here this morning. Ugh
If anyone has any suggestions I would be greatly appreciated as I want to stay on the pill, anything to keep this from reoccurring. I completed herceptin for a year on 12/29/2017. I almost rather continue with that then this. I had no side effects from the herceptin.
Thanks Hahlyn
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Hahlyn: You and I have similar dx. My MO would not prescribe Nerlynx for me cause she said that Nerlynx doesn't seem to benefit those who are hormone negative. (I had a rough time with diarrhea during TCHP too so I'm kind of glad that I'm not on Nerlynx.) Yet I see other hormone negative gals on this site getting Nerylnx.
Makes me wonder if I should try it. I finished Herceptin in October 2017 so I guess I still have time.
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Hahlyn - I really limited my food intake, kept to a brat diet and stayed near the toilet after eating when I initially commenced the drug. After about a month I was able to introduce a more regular diet and would only have occasional bouts of diarrhoea. I am now three months in and only have diarrhoea if I eat out or drink alcohol. If you can stick out the first month everything seems to settle down
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Hi everybody. I started taking the nerlynx yesterday, a month after completing Herceptin. I had some dizziness but it could be the Arimidex or Prozac which has been causing intermittent dizziness. I just don't feel as stable on my feet as I did before BC. Anyway, so far so good. I hope this thread keeps going as I feel less alone with the therapy knowing others are in the same boat. Thanks for listening
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thanks zzyxed
Honestly this feels like chemo all over again at least with chemo it was once every 3 weeks. This is every day with no reprieve. Today I had to leave work I started to feel hot and sleepy. I came home and immediately had to lay down also my back started to spasm just a mess.
When I was on TCHP I worked from home but that option isn't available anymore. I'm so bummed because I wanted to do what I can to.prevent recurrence. Sent email to my oncologist hoping they can modify the dosage.
Honestly i would do.herceptin for another year rather than this...
Hahlyn
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I talked to my oncologist about nerlynx he wanted me to start it may be next month after my Last herceptin
And I told he that the D scare me he said he has other patients and they aree doing fine
I had hard time with perjecta so I don' t want to have same thing
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I've got 15 more infusions of Herceptin/Perjeta to go but I'm keeping my eye on this thread. I have not spoken to my oncologist about this yet nor has she brought it up. I figure I have some time to think about it. I'm sorry some of you are having bad reactions. The thing I just can't stand about this whole ordeal is that there is no real consistency when it comes to the treatment. Some do okay, some do not. No rhyme or reason to why.
Good luck to all forging forward with Nerylynx.
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Well, I got to day 7 on the PUMA clinical trial taking Nerlynx, Imodium and Colestipol when all hell broke loose. I had severe diarrhea, nausea and some cramping on Friday morning. I called the coordinator assigned to me for the trial and she told me to hold the Nerlynx and just take the Imodium and Colestipol. Nothing was stopping the diarrhea, and I could barely eat. By Friday night I was vomiting as well so my husband (anesthesiologist) put an IV in me and ran in 2 liters of fluids along with Zofran IV for the nausea. I felt a little better but had some lower abdominal pain. Saturday I could barely move and no longer had diarrhea but now had a low grade fever. Hubby took me to the ER and the Cat Scan showed acute appendicitis! I had laparoscopic surgery at 2am Sunday morning and was home by Sunday afternoon. I don't know if I can continue in this trial; as many of you have said, I felt just like or worse than I did on TCHP. I am also hormone negative and had no positive lymph nodes. My MO was against me starting this trial, and now I think he may have been right. As it is, my coordinator wants me to take a 2 week break from the Nerlynx. She doesn't think the appendicitis was related to the medication, but I have my doubts. There's a lot to think about, but the possible benefits aren't outweighing these SE's. I went into this with such a positive attitude, and now I don't know what to think...
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I can't seem to make sense of who is being put on this medication. At first I thought it was hormone negative patients since they don't have other meds to take. Then it seemed like maybe it was those with more advanced disease or those that didn't get a good response to chemo with Herceptin.
My MO hasn't mentioned it and I'm almost afraid to! He generally doesn't seem to like suggestions and I'm one to have all kinds of weird SE's to everything. I almost quit chemo. I almost quit Herceptin. I did quit Tamoxifen. I don't know if this would be worth it for me.
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docmama- That is scary. Are you going to try and take it again after the 2 week break? I have my last Herceptin treatment on March 15th and I just got a call that I am approved for nerlynx with no co-pay required, I think I am a little leery of taking it.
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NotVeryBrave I agree. My MO did not want me to go on it, I am on an AI and Zometa, completed herceptin. She is at Dana Farber and they aren't recommending it. I'm curious what other MO's are using as their criteria.
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There seems to be quite a range of responses, I can understand why each of us needs to weigh it personally and see what makes sense for them.
I'm approaching two months on it. I have had some D, not usually more than 1-2 incidents a day, and if I'm willing to take enough Imodium it moderates or goes away. I haven't been wanting to overload the Imodium as too much gives me C issues which are more annoying for me than the D.
Fatigue has been the single most uncomfortable thing for me, especially after having flu and recurrent D issues earlier this month - all of it together made me feel really exhausted. But a couple of weeks later, I'm doing better.
I was treated for DCIS some years back, and then had a new tumor found in 2016, diagnosed as HER2+, ER+ PR-. No indications of node involvement with either Dx. I feel like I'm at decent recurrence risk so I'm planning to stick with the Nerlynx unless something really severe happens. So far it's feeling that I can probably sustain it. But even if I only make it a few months, I hope that will have some impact on risks.
ETA: as there was mention of this as a consideration in whether MOs are diagnosing Nerlynx, fwiw I had a very small area left after neo-adjuvant TCHP - tumor reduced from 2cm to 1mm. My MO and I didn't get into detail as to why I would take it based on any detailed factors like that.
Just that with my history, overall I have factors suggesting higher risk. He's probably run some tests but I've never wanted to hear a statistic/probability - not sure what good it would do to have that in my head.
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Mystyeyes:
I have my Last treatment on March too
I don't know if I am approved for Nerlynx but my oncologist wants me to try it
The big D scare me
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It seems to be in practice that this drug is being recommended to those who had multiple positive nodes or did not have a complete response to chemo. I am receiving it as part of the puma trial and it was recommended for because I have a high risk of recurrence because of my many positive nodes.0
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I did not have any positive nodes and had complete response to chemo. Maybe my doctor recommended it for me because I was crazy one day and told him I didn't want a reoccurrence and I didn't even want to hear about a 5 year survival thing and I am not a survivor until I die of something else in my 90's. Not real crazy - I didn't yell or anything, I think. I decided to do it because it was recommended and I am afraid not to do something. I can't help but think that years and years from now when they have a pill or vaccine once in your life they for cancer, they will be talking about how we were poisoned during cancer treatment and how crazy the medical treatments were.
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ladies
Well I made it 6 days on nerylnx I called the case manager and emailed my oncologist. The diarrhea was awful way worse than tchp im embarrassed to say it was uncontrollable at night and I was having accidents at night while I was sleep. That never happened during TCHP. I was told to stop and only continue with the immodium. I will say after being off the meds for 1 day I feel better now no more D and no nausea. I am bummed because I don't know if I can continue. I did have some residual disease after neoadjuvant and lymphnode involvement i also did AC treatment after my surgery then radiation. I am the person who was asking for a pill and now we have it but I can't take it...I'm just so sad...
Hahlyn
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I’m sorry the drug didn’t work out for you. Being hormone negative the trial results don’t look like the drug provides much benefit anyway. I am also hormone negative and my thoughts were that I would give it a go as it seems silly to not try a treatment that might have a benefit but if the side effects proved to be too difficult I would give up pretty quickly. My diarrhoea was never uncontrollable in the early days. I was on the colestipol trial which you supplemented with Imodium as required. While I had a few days in a row of excessive diarrhoea it was always predictable. I was on leave from work and would just stay near the toilet rather than take the Imodium as I didn’t want to deal with a constipation / diarrhoea cycle. I know it’s scary to not be taking anything after so many years of treatment. If there was just a crystal ball that could let us know which side of the statistics the future holds for us.0
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My doctor said that he would prescribe loperamide to take when taking nerlynx, with the dosage being less each month.
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Well I thought I wasn't going back on the pills but my doctor has decided to continue on a lower dose (5 pills instead of 6). My.opinion that's not going help much with the D. I will say it has been glorious being off the pill for a week. I'm starting back tomorrow and freightend and the thought of the accidents while I sleep. So embarrassing. But I will try it out again with the hope that this time around will be better.
Trying to figure out when I should take the pills think im going to try midday while at work and hope for the best.
Hahlyn
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I hope the break and reduced dose helps, Hahlyn
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Hi everybody. Well it's been almost 3 weeks since starting the nerlynx. After a week, I had to taper off the loperamide and have not had any in a week. So far so good. I just wanted to mention this as not everyone gets the horrible side effects. It's a very personal decision to start or continue on the drug. I insisted on it as I am throwing everything I can at the demon gremlin BC. I hope this helps someone
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Thanks Suburbs for the input. I will be starting soon and I am confident I will be ok with the loperamide, and was told by the doctor that you need less loperamide as time goes on.
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Thanks for that encouraging update. I’m starting it on May 1st.
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Hello
So far this round with nerlynx I have made it 8 days... when i started back I had 2 accidents while I was sleeping but I think I've figured it out. FOR ME i cant eat after 3pm. Seems like I have to have an empty stomach prior to going to sleep. That has helped. The D is still ongoing during the day but that I can control. Also I have fatigue but I believe that is normal. Just thankful looks like I'm going to be able to continue. I like everyone else want to throw eveything I can at this beast.
Hahlyn
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I start Nerlynx on March 24th. I hope that starting on the weekend will help me figure it out a little before going to work on Monday. I hope it will be something that I can handle with immodium.
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I start Nerlynx on March 22nd in a clinical trial. It's not approved by Health Canada yet. I will update how I am doing. The oncologist told me that very few patients in the trial are getting the big D! I am hopeful.
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