Starting Nerlynx in May, 2019
Comments
-
Oh, LeftFootForward, I forgot you were in Seattle, also! We haven't heard from you regarding Nerlynx--I'm hoping you were able to get into the trial. Please update us!
0 -
Betsy-
Sorry. I forget where I have posted. I did get into the trial in CA.
I travel every 3 weeks to see the team in San Francisco and to get my next bottle of Neratinib and to get one cycle of TDM1. I wasn’t down and back on Tuesday of last week ( 20 +hour day).
Combination of adjusting to meds and the travel are about king me in terms of fatigue but I’m plowing through it. I’m told my body will adjust.
I get scanned at the end of this cycle so CT in the 23rd, brain mri in the 27th. just believing both will be good and it’s all worth it.
Thank you for asking.
0 -
I'm about five days back into taking Nerlynx and oh my god this is what everyone was talking about. It started yesterday early morning and just got worse all day long. I must have made 10 trips to the bathroom, maybe more? I did not know it was possible to crap out meals you haven't even eaten yet! On the upside, I did hit the waffle house for lunch yesterday. Two eggs over easy, biscuit with gravy, hash browns scattered smothered and diced. And a pecan waffle. I ate it all. Not my best idea ever, I probably should have opted for six bananas instead. Things seem a little calmer now, but it was tolerable during the day yesterday, and I've been eating small amounts, so after dinner I'll have a better idea if this was a one-day thing or if I need to contact my pharmacist. I came back in with six pills a day off the bat and maybe that wasn't the best idea. Still took six more today though. We shall see. Hope everybody is doing well.
leftfoot - I'm glad to hear you got into the trial! I wish this could have been easier for you.
0 -
That was a rough two days but everything seems better now. No problems since dinner last night. Still doing the six pills. I have six months left.
0 -
hapa, this is great news! I read your post late yesterday and didn't get to respond until now, but what I wanted to say in response is this: if you were going down, you might as well have done it in a blaze of glory, eating at the Waffle House! I wouldn't have had the chutzpah to do such a thing!
As for me, I'm happily eating salads and anything else I want, and things are very "normal." What a turnaround from the first 17 weeks!
0 -
haha - I am sorry you had a bad couple of days, glad you are better. And, I applaud your trip to the waffle house! That made me smile.
Beesy - I do separate out my meds, and when I switched to taking my Nerlynx at night, I transitioned all my other meds to the morning. The cholestipol still seems to be working, but still eat things occasionally that cause problems. I made stir fry this evening, with mostly vegetables, so took an Imodium just in case! Next, a salad!
Fortunately, the snow wasn't as bad in the city as they were warning! It's so hilly here, it makes it hard to get around.
Leftfoot - Congrats on getting into the trial. The travel sounds hard, I hope it goes easy for you!
0 -
Beesy - I'm glad you're doing better with your reset.
PJ - I do not envy you in the snow up there. I told my husband we are never moving north of the Mason-Dixon line again. I just can't handle the snow. Phoenix gets hot as Hades during the summer, but you don't have to shovel sunshine.
No more issues since the D cleared up, I'm glad to report. Also, it looks like my Nerlynx is costing my insurance company $14k/month still. I don't know what the $4500 charge was. But I checked my insurance today, and my entire deductible and out of pocket max seems to have been paid, minus $20, by the Nerlynx patient assistance program.
In other news, two people have told me that I have more color in my face lately. So maybe that break did do me some good.
0 -
Good afternoon, friends. I'm a month into my re-start of Nerlynx and am amazed at the difference from last go-round. Thought I'd mention this if it helps you, PJ or leftfootforward, that when I went to the MO in November and he convinced me to take a break, I mentioned having used Miralax to control the constipation brought on by the extreme D of Nerlynx (the Miralax turned the "water-like" D into something less water-like, also). The MO mentioned that he thought Psyllium caps would do that better--it is more bulk-forming, if you will. So days before my re-start, I started Psyllium caps (four) at night. I have had almost zero D, except for two days, but in both cases I realized later I'd forgotten to take the Psyllium the night before! I'm eating all the things I was not able to eat the first go-round. I was taking up to eight Imodium daily on the first go-round and still having serious issues. It's a night and day difference.
I hope you are all doing well!
0 -
how are you doing? I’m about to start nerlynx and AI. Dreading it to the point i might not do it. Been thru too much
0 -
i had tchp. Neoadjuvant. Stage 3a 1 node at diagnosis 3 were questionable 6 cm tumor
Diagnosis affected. 2 others questionable. I had near complete pathological response. Mere scattering of microcells They could not even retest receptors. I did HP for another 13 rounds. Of course they want me todo AI and Nerlynx since I’m Er and her2. Still struggling if i want to do it. I’m worn out. I’ve read everything i can about this cancer. My eyes are worn out. I’m not sold on AI or nerlynx. quality of life has sucked for last 18 months. Not sure mentally i want to do more. Every study contradicts anotheg
0 -
@MissouriCat RE: magnesium for leg cramps- not sure which form you're taking now, but I get diarrhea from magnesium citrate and I have NO problems on magnesium glycinate (not cheap, but well-absorbed/ utilized by body, as citrate is. I take omnibiotics brand available on Amazon)
0 -
Beesy - that's interesting about the psyllium, I am glad it is working for you.
I'm still on the cholestipol, and have been able to add more vegetables, including small salads, back into my diet without incident. The fatigue is still bad, though. I was sick a couple of weeks ago, and at this point I don't know if I am still run down from that, or if the fatigue has gotten worse. I guess it doesn't really matter, I'm going to keep going regardless. This is manageable.
I finish month 9 later this week! When I called to schedule the delivery of month 10, I was happy to realize that I only have to do that two more times.
0 -
Ladies, please give me your opinion on when to take the neratinib pills. Lunch, afternoon snack, or dinner? Do the tummy troubles happen a predictable length of time after taking the pills? Does it disturb your sleep if you take them in the evening?
The trial instructs me to take 4 mg Imodium three times per day for the first two weeks. Then twice a day for the next two weeks. Then as needed.
0 -
My tummy troubles seemed to come at different times of the day. Sometimes it started early morning before I would normally get out of bed. Sometimes it started after lunch. Once it got going it was kind of an around the clock ordeal, but would definitely peak right after a meal, or sometimes even during. I always take them in the morning, because that's the only time I'll reliably remember to do it. I try to eat at least a small amount of food right before/after but sometimes I forget.
I suppose the trial doesn't allow you to taper up to six per day? I feel like if you're not generally prone to diarrhea then all that immodium may cause more problems than it solves. But I guess you can always counter-medicate if you get constipated.
0 -
Maybe I will be instructed to do that. I start next week. I’m not to change anything without talking to the trial nurse. She had better be available, because my first duty is to take care of myself.
0 -
Shetland,
Like hapa, I take them in the morning but I know many who prefer to take it in the evening because their number one complaint is fatigue, so they feel that they sleep through the worst of it (no one I know indicates that it causes sleep problems). I would definitely take it with food. Nerlynx requires an acidic environment, so getting the digestive process going helps with the Nerlynx absorption.
That much Imodium may be too much for you--it's hard to know (can you back off if needed?). Some women take Nerlynx and have very few digestive issues--it seems very hard to predict. My experience is that you simply cannot predict the timing of the diarrhea--sometimes right after eating and sometimes hours away.
I was sailing along on my restart and got to five pills this week (I'm 4'11"), feeling great and eating salad with abandon. Had lunch with a friend yesterday (salad) and the rest of the day was BAD--the worst ever--this after a month of eating and pooping normally. I've gotten to the point where I think I just can't handle five Nerlynx. As an encouragement, though, there's a woman with MBC on the Nerlynx FB page who has been taking Nerlynx since August 2017. She started with six pills, but because of SE's, she's now down to three. She has MRI's and CT scans of her entire body every three months and she has no new evidence of disease! She piped up because there was a conversation about the efficacy of taking fewer than six pills.
The only time I was up all night was after eating Brussels sprouts at dinner. I love them, but won't be eating them again anytime soon--I don't like them that much to miss sleep.
0 -
jersey- Brussels did the same thing to me. I miss them.
0 -
I just started month 10 and take a cholestipol every day, and still have D that seems totally random. The cholestipol definitely has helped a lot, but I still carry around Imodium, lomotil, and zofran with me. I can see a little light at the end of the tunnel, that's what keeps me going. Every time I have nausea, or a muscle spasm, or I get a new crack in the skin of my fingertips, I just say to myself 'month 10' and it helps.
hapa - I finally had my first double-dose day, and I thought of you and LG. I caught myself halfway through, so it was an extra three pills that day. But I did it two hours after I took my daily dose! That's how bad the fatigue is, especially by the end of the week (it happened on a Friday).
0 -
Does anyone else get queasy a few hours after taking the neratinib pills? I take them in the afternoon and I am queasy in the evenings. It does not seem bad enough to take zofran every day, but it destroys my already very small and very iffy appetite. I am on day 5. Six pills out the gate, no slowly building up to that on this trial.
SUMMIT trial: Neratinib, herceptin, faslodex
0 -
Shetland,
The short answer to your question is yes. I take Nerlynx in the morning and it affects my appetite to some extent all day long, even into the evening, and for reasons that make no sense to me, the evenings bring on a certain queasiness that's almost like the way I felt when I was pregnant--like "morning" sickness.
Do you have any flexibility in the time of day you take it? I've read of many women who say that taking them at bedtime helps them to sleep through the side effect of fatigue.
0 -
Yes, it is like pregnancy sickness! And you get it in the evening, too, even though you take Nerlynx in the morning. Huh. I could move the time I take it an hour each day. I chose the afternoon because that is when my body handles things best, in general.
0 -
PJ - I'm glad you caught yourself. I felt like after my double dose my SEs went way down, even though getting through the couple days after that was tough it was worth it in the end. As if my body were saying "what, only six pills today? Pffft! I can handle twice that!" I hope you also see a reduction in your SEs going forward.
Shetland - I would get a bit of upset stomach many days, a few hours after taking my dose. It went on for quite a while, maybe 4 months, and was getting much better until I was told to stop taking them for three weeks by my PS. He didn't want me on it during surgery for some reason. I had two days of terrible D after I restarted but since then it's been smooth sailing, no SEs at all. I also had poor appetite when I started but that resolved in maybe a month.
I've got five months left. Not really counting anymore though since I'm not having any SEs. It will be nice to not have to remember to eat breakfast every morning I guess.
0 -
Shetland - I do get nausea, although it is usually in the morning because I take my dose in the evening. So, indeed morning sickness for me!
I had a lot of nausea in the beginning, felt sick pretty much all the time. It got better when I stopped taking multiple doses of Imodium every day at the end of the second month. They weren't recommending starting at a smaller dose then, so I was taking a full dose from day one and all that Imodium. Since then, when I have had to take it for more than a couple of days in a row, I start feeling sick like that again.
hapa - Unfortunately, I didn't notice a change in the SEs. I have to admit that it has made me consider taking a couple of extra pills every so often to bring my end date up a little bit! 😀
0 -
PJ, I've been wondering is the nausea could be from the Imodium. Today it has been low-grade nausea all day. I see that nausea, and dry mouth which I also have, are listed as “common" side effects of Imodium, meaning occurring in up to 10% of people. Of course, for neratinib nausea is 43% and dry mouth is up to 10%. The trial requires six pills from the beginning, along with two Imodium pills three times per day. The Imodium will get tapered off eventually, so we'll see.
0 -
Shetland - how are you doing besides the nausea?
0 -
I am doing lousy. I feel like quitting. Constantly queasy and so tired of forcing myself to eat and drink. It is day 7 and the D is still 11 times per day. I called the nurse and was advised to take zofran for nausea, switch from Imodium to lomotil, and get some electrolyte drinks. I think six netatinib pills per day is too high for a pony but the nurse does not want to talk about lowering my dose yet. I don’t know if that is even allowed on the trial.
0 -
Oh, Shetland! We do understand, and most of us have been where you are, or still are--though we had far fewer restrictions on the dosing of Imodium and Nerlynx. I think the nurse told you the right things and here's hoping they will allow you to lower the dose if necessary. I know other MO's are doing it for MBC, though I understand trials are different. On the FB group there is a woman with MBC who was in a 2017 Neratinib trial and this drug alone got her to NED and she's been that way since--ON THREE PILLS! Even in the short time since I started reading about Nerlynx it seems that MO's have come to see that a smaller pony and a smaller Beesy might not need a full six pills to be effective. I am fully aware that as "early stagers" we have different issues than you and leftfootforward, but we are motivated to take this drug because it crosses the blood brain barrier and HER2+ cancers like to go there. Most women do adjust, so I would take the Zofran or whatever helps to get there. In my worst times, when food just sounds awful, protein drinks give me calories.
As an encouragement, leftfootforward is in a trial in San Francisco, and she saw improvement on the first scans!
0 -
Shetland - (((hugs))) The start seems to be rough for most people and what you're experiencing is unfortunately normal. The good news is that it does seem to improve for most people. Liquid diets always seem to help me when my stomach is upset. I made protein shakes with peanut powder and soy milk (and cocoa and molasses) when I wasn't in the mood to eat. Add in other little things during the day to get your calorie intake where it needs to be -- juice instead of water, extra milk or cream in your coffee, etc. And small meals spread out also seem to make the nausea less severe.
0 -
Shetland- can you ask the study if you can take colestipol or the steroid budesonide? In my study it is allowed and actually I had to take 2 tabs of the colestipol twice a day and it did help with the big D. I was not able to eat fruits or veggies or really eat during the day due to work for the first 6 weeks. I just times meals around when u was home and by my bathroom.
I am so sorry. It dies suck. I will say my body send to have adjusted and now I just Feel bloated most the time but not nauseouos and the Diarrhea. Has stopped or is predictable.
Reach out to your team as I hope they have options for you. my m is who prescribed my anti diarrheal.
0 -
Why should i keep adding or changing drugs for nausea anddiarrhea when simply reducing the dose of neratinib is the obvious thing to do?
I’m beyond the small meals spread out, hapa. I can hardly choke down half a cracker or a biteof banana.
0
