Nerlynx Approved by FDA to Treat Early-Stage, HER2-Positive BC
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Hello All
Saw my oncologist yesterday, I finished herceptin Dec 29. Prior to my last treatment she spoke to me a little bit about nerlynx but didn't give much info. I was so excited because there is a pill for us Her2 gals. Yesterday she starts fully explaining the side effects which I knew about from reading the boards but she made it seem like I could possible be in a debilitated state like I was during TCHP😯 That regimen was hard on me the big D from September to January every day. I was weak and needed fluids for two days after every 3 week treatment. I did not recover until 2 weeks later. I had 1 week of where I felt half way decent then time for another treatment. It was brutal!
My question is for those that had TCHP and a rough go of it and are now on nerlynx how are you doing? I want to take this medicine and do whatever I can but I am freightend at the thought of explosive diarrhea, possible nausea and or being in a debilitated state like I was on TCHP. She did say I would be loaded up with immodium but that didn't work for me, only limodil (spelling) just scared but at that same time want to take a stab at it.
Hahlyn
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I've reached 5 weeks on this drug. I had intermittent D issues the first few weeks. Just a one-time thing 3-4 mornings during the week...no nausea or queasiness.
After 2-3 weeks, I had some days with lower abdominal pain that went away and hasn't come back, and one day of slight fever that might not have had anything to do with this drug. My MO didn't seem worried about either of those things. No weird issues in any of my labs so far. The only time I've missed work was the day I had the fever, and for check-ins with the MO.
I've been taking Imodium but the total amount they suggested led to C issues so I backed it off.
I've had no SEs the past two weeks except fatigue; taking just 1-2 (or occasionally zero) of the Imodium.
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Hahlyn, I can understand your hesitancy at taking Nerlynx due to possible side effects. I can tell you my experience & what is now working for me. I'm now on it the 2nd time after stopping for a month. The first time I managed to stay on the drug for 16 days. Starting day 13 I had severe D, with resulting dehydration, that only stopped when I'd stopped the drug. I ended up going to ER for IV fluids on Christmas Day & 3 other days getting IV fluids at Onc Infusion Center. I had tried the Imodium 3 x day as ordered but that caused C the first week & it wasn't helpful in prevention of the big D later on, either. I didn't have Lomotil ordered from the beginning & that was a big mistake! I also had nausea & vomiting, fatigue & was generally just miserable. I actually felt worse than when on chemo - was on TCHP with IV fluids for 3 days after each treatment.
I found out some ideas from others on a FaceBook Nerlynx support group that has really helped me this second go round. 1. Premier Protein Shakes have been very helpful. They're normally constipating for a lot of people so help to decrease the big D. I've been using them every morning & night, for taking my pills. It has also really improved my energy level. 2. My regimen for Lomotil & Imodium is as follows: 1 lomotil tab after each liq stool up to 3 times, then the next time I take Immodium 4 mg (max lomotil is 8 /24 hrs). So far, this has worked for me & has slowed or stopped the diarrhea in 1-1 1/2 hours every single time. 3. I'm very proactive in taking Zofran for even the slightest queasiness. I'm also using Compazine at night. Not only does it keep me from throwing up, it helps me sleep. So far this has worked very well & I'm feeling lots better this time. However, today is only day 11 of 2nd time around, but I'm very hopeful this will continue to work. I'll really know for sure when I get past day 16 next week!
Some people have very few SEs & others have a difficult time like I did, or worse, or anywhere in between. It's good to be prepared ahead of time & keep track. That's another thing that really helped me, kept track of everything the first time & now I can compare. I wish you the best & hopefully some of these ideas will be helpful when you start.
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Misslil and Mardea Thank you both very much!
Mardea..my Lord that was awful for you and just what I'm afraid of...if I may ask did you have nausea on the TCHP? I only had it twice but was quickly given compazine which helped a lot. Lomotil was the only thing that somewhat helped with D issues. I told my oncologist but she said to use the imodium. I'm going to push for a prescription for the limotil as well.
You know i had just started to feel decent and the thought of this scares me..but i will always wonder what if...if I don't at least try...
Please keep us posted when you pass day 16.
Thanks again
Hahlyn
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Mardea, very sorry this has given you such a rough time - I hope it stabilizes soon
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I have been on nerlynx for 2 weeks. When I started it I started the Imodium just like they said to. 2 pills three times a day. I got so constipated. Got nauseated so backed off the Imodium. I had diarrhea a few times and took some Imodium then. I finally decided to stop Imodium all together and started back on my Metamucil that I have taken for years. Just don’t take at the same time you take other meds. It can interfere with the absorption. No more nausea, cramping, diarrhea or headaches. We are all different but so far this is working for me.
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Hahlyn, & Barboyd, What you said about your MO wanting you to take the Imodium 3 x day was what my MO wanted me to do as well, even though I told her that Imodium never worked that well for me & that Lomotil worked much better. Would be good if they'd just listen to their patients instead of trying to follow a standard protocol that isn't going to work for everyone. I could be a lot further down the road with Nerlynx if she just listened to me in the first place. It's not that I don't like her, she's been great, except for this. I got C big time, the first go round from taking Imodium so I backed off as you did.
The 2nd time, I took Imodium just 1x day for the first 2 days, then stopped it altogether due to the big C again! Also, I had major vomiting on night of day 1 after my very 1st dose, with absolutely no prior warning! (1st time, no vomiting until after day 13.). Because of that I've been pretty consistent with Compazine at night whether or not I have any nausea.
I had some nausea when on TCHP, but never any vomiting as with Nerlynx. When on TCHP, I was receiving anti nausea meds by IV & also for the 3 addit'l days whenever I went in to get IV fluids, so nausea was well controlled & it was rare that I even needed Zofran at home.
I hope everything will go well for you. This is day 13 for me, the first day last time when everything went "to hell in a hand basket" so to speak. So far, so good, on my current regimen. I'm very optimistic that it's going to be ok this time!
Marlene
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Great to.hear Marlene! Keep us posted..I'm going to my foot down about the lomotil. I'm back at work full time and I can't be messing around with immodium. Like you said they need to listen to the patient!
Hahlyn
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Hi everybody. Thank you for sharing your experiences dealing with the side effects. My nerlynx was delivered yesterday in an armored car. Actually, it was UPS. It took a month dealing with my regular pharmacy and a specialty pharmacy. The co-pay is still to be determined. For KimCee, so far I have been quoted two amounts, $100 and $150 for a one month supply. I was surprised the specialty pharmacy sent it without a payment. I was told that a rep from their pharmacy assistance group would call me.
Upon arranging for delivery, I was transferred to a nurse who spent a good half hour explaining the protocol and side effects. The nurse navigator at my treatment center had also called me sharing the same information. My oncologist had told me to wait a month to start after my last Herceptin. So I'll start in two weeks.
Again, thanks everyone for the posts. I will share once I have started. Have a good weekend
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Not glad that you are having to take Nerlynx, but I am glad that I get to see how you are doing on it before I have to take it.
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Has anyone noticed catching more than a usual amount of colds/flu since starting this drug? It's not the worst problem in the world but I came down with another fever/etc Saturday night, on top of the one I had in mid-January.
There is plenty of cold/flu roaming around right now, so may be entirely unrelated but I do wonder if the drug might increase susceptibility.
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Thank you Suburbs,
Dopey me thought I was starting after Taxol. But, of course I am starting after Herceptin. That will not be until October. The copay is pretty lousy huh? My oncology nurse is on for six months and she said only occasional bouts of diarrhea. That is comforting. I read about those who are so dehydrated from diarrhea and end up with IV fluids.
Keeping my fingers and toes crossed for you!!!
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I would love to have a copay of $150 a month. Medicare does not cover and the best deal I’ve found is $100 a day, from a pharmacy that gets a special rate. Well, I have a few months to decide
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Is Medicaid not covering it all, or only for certain subsets of HER2+ patients? Perhaps they will revisit and start covering it as it gets out there more.
I met with one of my doctors last week, and I was actually her second patient on it, not first, and she'd just attended a seminar where it was discussed.
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I don't know what Medicaid is doing, but Medicare part D is not covering as of now. Or,at least mine isn’t.
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Hi Bareclaws, Your oncologist will need to appeal the Medicare denial & get it reversed. Medicare Part D will pay after an appeal for reconsideration is reviewed & the drug is found to be medically necessary. There are also ways to cover the astronomucal copay! Just don't give up because of being on Medicare. Staff at your MO office should know how to get this covered for you.
I have a Medicare Part D plan (Humana Walmart) & ultimately they did partially cover the cost of Nerlynx. There was still a $2800 dollar a month copay, which I could not afford. That was then covered by a program that helps cover copays for specialty drugs but only covered for the first 1 1/2 months. The application for copay relief was initiated & sent by the specialty pharmacy who supplied the drug.
Now that has run out & an application is being sent to the manufacturer. I've been told they will usually cover for minimal or no copay depending on income. The legwork on this was all taken care of by the oncology office - pharmacy, liaison nurse & my MO who appealed the denial from Medicare & got it reversed.
At least you have some time. It took about 2 weeks to get the initial coverage for me.
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So glad to find this thread. My MO offered this to me but also told me about the devastating SE's his patients were having....I opted out. I had such debillitating D with perjeta....maybe I was wrong to say no?
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Mardea15, thank you so much for your response. This is exactly the information I need. I’m calling the pharmacy person at the hospital today and will read this to her and see what happens.
HappyHammer, I hate taking any type of pharmaceutical drug, as they all have side effects. But this one sounds like it could be important to my future. Especially beneficial because I am both HER2 and strongly ER positive. I’ve considered the possibility of terrible side effects but know that not everyone gets them and that many people are able to manage them. It’s worth a try. I had three types of BC across two breasts, so nothing is off the table.
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Just wanted to mention (if it hasn't been already) that there is copay/financial assistance available for this drug from Puma the manufacturer. I just don't want people to be discouraged about the costs. Many patients in the Nerlynx group are taking advantage of this. Also I am in my 5th treatment month & doing fine. Don't be afraid of trying this based on soemthing that might happen.
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Hi Everyone! I am starting Nerlynx tomorrow through the clinical trial. I will be in the Cholestipol/Immodium arm. A bit nervous about the whole thing, but I'm preparing myself mentally for the possible SE's. I had some diarrhea with TCHP, but it was mostly manageable without taking any anti-diarrheal medication, and I was able to work all the way through so I am hopeful. Frankly, I'm more worried about constipation than anything else. From what I read in the Consent document that I signed, I am supposed to take my 6 pills at 7 am "with food". Any suggestions as far as what is good to take with the pills? I had read that the Premier Protein shakes were good. Any input would be greatly appreciated.
Angie
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Hi. The specialty pharmacy copay assistance group called me today and said it would be a $10 copay after I get a pharmacy card they are organizing. There were no requirements to provide financial needs information. I have insurance, not Medicare. I mentioned that Medicare patients were having trouble with the approvals and cost. I was told that for these patients, rather than the assistance provided by the manufacturer, a specialty pharmacy can seek copay assistance for patients from various foundations that offer assistance. It's worth asking further to get that discount. Hope this helps someone. This process from script to delivery to copay assist took 6 weeks. All the best
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Suburbs, what you describe is exactly the minefield that I’m trying to navigate right now. Talked to my first foundation this afternoon and they offered me $5000, which will cover my copay for not quite two months. Then on to the next foundation I guess.
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hi bareclaws, rotten that you have to deal with this mess. Just an idea, contact Puma and explain your situation. Tell them you have sought assistance from foundations and see if they would be willing to pick up the difference once you've exhausted the foundation options. Hope this helps. Please keep us posted
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yes, that’s what I will be doing. Lurching from foundation to foundation then back to the manufacturer
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Hi Bareclaws, I, too got $5000 for co-pay assist from a co-pay assistance foundation. It lasted for 1 1/2 months worth of Nerlynx. My MO office / infusion center (pharmacy staff) have put through an application for me to PUMA Mfg Co, and I'm just waiting to hear back from them. I have one week's worth of medication left & I hope they get this figured out before I run out. The pharmacy person at my MOs office told me that once the co-pay assistance runs out, and the application gets accepted through PUMA then they will cover for the rest of the 12 months on the drug without having to go through any future applications. I have an appt with my MO on Tues so will be following up with them for sure on Tues.
I sure hope this is all done this week with no more hassles! I will let you know what I hear back this week.
Marlene
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Mardea, sounds like we’re exactly in the same situation, although I’m a few months behind you. Please keep us updated about how it goes for you. I’m certainly going to be hanging on every word.
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Hi all,
I am back to the boards because I am trying not to quit taking Nerlynx. I'm on day 9 after taking a full day off. Admittedly, I was not enthused about taking it given it had only a 2% difference between the placebo group. I did TCHP and didn't have anywhere close to the diarrhea that I have with this even after taking Immodium. I'm sitting here watching the Olympics trying to take my dose. I'm miserable.
I had a year of Herceptin and Perjeta which had similar benefits. I know everybody is different and may have better results. It's very discouraging. I have a nurse assigned to me from CVS who said suggested that I slowly build up to taking it. Take 2 pills 1 week, then add 2 than the full dose the 3rd week. She also said 1 in 4 women she monitors end up discontinuing because of the diarrhea.
It's really the culmination of everything. I still have neuropathy from chemo, I take AIs and Lupron shots which have those SEs and radiation. Just very tired.
Curious if anybody had a rough time and how long it took for the body to get adjusted.
Thanks!
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hydeparkgal, I just wanted to let you know that while you may be feeling miserable, I hope it can be comforting to know that you were heard and have support. I have learned there is another script that helps with the side effects, lomotil. Apparently it is a controlled substance but maybe it might be worth asking for since your side effects are so severe. Hope things get better for you
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The first month I had only intermittent diarrhea. It was weird last week when I was out with flu that all of a sudden I was having daily diarrhea (but no nausea/vomiting).
I'm not sure whether that was a variation on the flu, was a SE from the Nerlynx coming back worse than it was in the first month, or maybe a mix where the flu had me run down so that the Nerlynx SEs could make themselves felt a lot more than I when I was in better general health. Trying to get things back to normal, between one thing and another I got pretty run-down and still not bouncing back fully.
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Thank you so much for your support Suburbs. Last night I stayed up u til 1am re-reading my pathology report. I researched every number aspect of the cancer to really feel comfortable with my decision to not take Nerlynx at least at this time. I’m sure MO will suggest lomotil. Her feeling was that I did pretty well with chemo and the Arimidex that I would be okay.. quite frankly I feel I’m doing chemo all over again..
I’m meeting with her tomorrow and will go over the pathology report and talk more about the benefits. I hoping for some peace about this.
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