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Starting Nerlynx in May, 2019

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  • laughinggull
    laughinggull Member Posts: 516
    edited May 2019
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    Bebe2, I started with 6. My doctor didn't mention any other schedule.

    Homemadesalsa, how are you doing? You cracked me up with the corn on the cob. It's hard to resist delicious food even if you know for a fact you are going to pay for it later. Later will be later but now is now. Yes, my 2lb of cherries for breakfast were not a good idea. By the way, the other day I had two mangos with chili powder + lemon + salt for breakfast, and that was not a good idea either...just in case you were thinking of mangos!

    Welcome to the club, hapa. Let us know how it goes.

    Cheers to all

    LaughingGull

  • hapa
    hapa Member Posts: 613
    edited May 2019
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    Took my first four pills this morning and chased them with a banana. Fingers crossed!

  • laughinggull
    laughinggull Member Posts: 516
    edited May 2019
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    May the force be with you hapa! Welcome to the club.

    Yesterday evening went to a work related party, downed three beers, plus sushi, plus various snacks and sliders, and topped it all off with a big (big) chunk of ice cream cake. You guessed it: not a good idea.

  • Bebe_2
    Bebe_2 Member Posts: 12
    edited May 2019
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    hapa, I am right behind you. Starting tomorrow. Stopped at the grocery and bought bananas and applesauce. I'll be interested in how it goes for you. As I have said before, I am terrified about putting this poison in my body!

  • Homemadesalsa
    Homemadesalsa Member Posts: 138
    edited May 2019
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    Hey dont be terrified. Its completely do-able. I'm 2 days into taking 4 pills, and my stomach and gut are fine. 1 imodium with morning meds and supplements, then 1 Colestipol at lunch. I had stir fry and salad last night for dinner. Just be kind to your gut for the first few weeks. Stay away from too much raw stuff without a benign base like rice or potato or bread. Your body will figure it out if you listen and are patient.

  • hapa
    hapa Member Posts: 613
    edited May 2019
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    LG - at least you don't have to worry about that ice cream cake going to your thighs.

    8 hrs in and no D yet. Once it hits, I'm going to waffle house. Silver linings, y'all!

  • Bebe_2
    Bebe_2 Member Posts: 12
    edited June 2019
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    So does the D hit right after you take the Nerlynx or after you eat? I sort of had a big dinner tonight and wondering what I should expect tomorrow after the first dose.

  • laughinggull
    laughinggull Member Posts: 516
    edited June 2019
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    Bebe 2, you should take it on a full stomach, and as Homemadesalsa says, sticking to meals with a benign base (rice, oatmeal, banana, bread) helps a lot. In my case it took three days to kick in, and I had a bad week before it started to subside.

    Now I get it if when I eat a significant amount of raw fruits and vegetables without Imodium.

  • hapa
    hapa Member Posts: 613
    edited June 2019
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    2 days down, 363 more to go! Still no waffle house. Maybe tomorrow...

  • Bebe_2
    Bebe_2 Member Posts: 12
    edited June 2019
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    hapa...I am two days down as well. So far, so good. I am just waiting for something to happen. How many pills are you taking and what have you been eating these past two days?

  • hapa
    hapa Member Posts: 613
    edited June 2019
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    I'm on day four now, taking 4 pills a day, no immodium. I've been eating my normal diet, which is 98% vegan whole foods with the occasional fish or eggs (maybe once or twice a week). It's very high fiber. I was eating bananas but I've quit for now as I'm having more C than D.

  • laughinggull
    laughinggull Member Posts: 516
    edited June 2019
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    Hi ladies,

    Starting my third month on Nerlynx. I cooked during the weekend. I am determined to not eat anything that I shouldn't be eating, and therefore have a good week. Yesterday, lunch was pasta with pesto and chicken without the skin, dinner was tomato soup and yogurt with fruit compote.

    Today, breakfast was homemade apple-cranberry bread, and lunch will be the same as yesterday. Dinner will be rice-based.

    I have observed that whenever I eat a good amount of raw vegetables without Imodium I have a tough time, every single time. Hapa, I am not vegan but my diet is plant-based with lots of salads...I am afraid I will have to take it easy on raw veggies for a while, and always have them with Imodium or with something that goes easy on my tummy.

    Have a great week everybody.

    LaughingGull

  • Homemadesalsa
    Homemadesalsa Member Posts: 138
    edited June 2019
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    Dang, LG. I am impressed. Success guaranteed. (haha we hope...)

    I have to go to Bozeman for a work meeting. No telling what I will eat, haha, but will try to keep it between the lines and have a good supply of immodium and colestipol on hand just in case. I am at my max dose of 4 as per my onc, and have cut out the daily colestipol, so just 1 immodium. I will ask him if I get same benefit as 6.

    Any of you having any kind of histamine/ allergy reaction to nerlynx? I am starting to get the itching on my arms that I had for a year on herceptin. Jeez I hope not.

  • hapa
    hapa Member Posts: 613
    edited June 2019
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    LG - I've been following your journey and took note when you mentioned raw veggies. It worries me. I don't know what I'll eat if I have to go low fiber. Tofu and rice, I guess? I eat tons of fruit and veggies, and I probably eat about half a head of raw cabbage a week. Lots of beans and lentils too. I thought a high fiber diet kept your gut flora in good shape and would help with D? I mean, it seemed to work for me during chemo. But everyone advises a low fiber diet while you're on Nerlynx.

  • laughinggull
    laughinggull Member Posts: 516
    edited June 2019
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    hapa, I have no problem with well cooked vegetables. It’s the raw, leafy vegetables that give me a hard time. Arugula mountain kind of meal, you know? And fibery fruits on an empty stomach, e.g. for breakfast (mango, pineapple), of which I can eat an inordinate amount of -if I don’t stop to think first. Cooked beans I am fine with

  • hapa
    hapa Member Posts: 613
    edited June 2019
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    Thanks LG, good to know!

  • hapa
    hapa Member Posts: 613
    edited June 2019
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    Day 5, no D. But I am So. Freaking. Tired. I fell asleep in a lunch meeting yesterday, and took a "nap" after work that lasted until about 3:30 this morning. I was feeling really tired in my lunch meeting today too. I think I may have to hit Starbucks.

    Hope y'all are well!

  • laughinggull
    laughinggull Member Posts: 516
    edited June 2019
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    hapa, that's awesome!

    I only was fatigued the week when the D hit me. Not sure if it was the drug of the D the reason why I was fatigued but it was short lived

  • hapa
    hapa Member Posts: 613
    edited June 2019
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    Still freaking tired. I went to Starbucks yesterday afternoon and wound up not sleeping well last night. So yeah, I won't do that again. I think this is day 6? Anyway, no real D but I did have an urgent BM after lunch. Lunch was black beans + brown rice, sauteed zucchini, peppers, carrots, and onion, plus some cole slaw and blackberries. That followed a breakfast of eggs and hash browns with some cantaloupe and watermelon. I don't normally eat eggs but I'm recovering from implant exchange surgery and thought I needed some extra protein, and my normal breakfast was unavailable to me this morning. I've been having more C than D still. It was the same during chemo. I go up to five pills/day on Friday. I will continue to update.

  • Bebe_2
    Bebe_2 Member Posts: 12
    edited June 2019
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    Hapa, I am on day 7 taking four pills. So far, no D or anything else for that matter. Dr. took me off the Imodium but I am still taking the Cholestipol. I will start with 5 pills on Saturday. I have been eating a normal diet though very small quantities and drinking coffee every morning. I am still waiting for something drastic to happen. My biggest problem is fatigue though not like chemo. I even took a 3 hour nap one afternoon this week and have been sleeping pretty well at night though I have had some crazy dreams. Keep us updated on your progress.

    Bebe

  • laughinggull
    laughinggull Member Posts: 516
    edited June 2019
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    This week I am being careful with what I eat, and I have no D. This is with 6 pills, no Immodium, no Colestipol.

    My menu yesterday: breakfast was oatmeal with soy milk, plus a cup of fruit with banana, berries and orange juice. Lunch was cauliflower with boiled potatoes and hard-boiled egg with oil-garlic-paprika seasoning. Bunch of almonds and an apple for mid afternoon snack. Yogurt with fruit for dinner. Tea and water as wanted all day.

    So plenty of veggies and fruit -just not cherries for breakfast Happy

  • PJ_Seattle
    PJ_Seattle Member Posts: 34
    edited June 2019
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    Hi all, I've been reading your updates and finally set up a profile so I could share my experience. I started taking 6 pills/day in April, and shortly after I started on the second 30-day supply I was taken off of it for a week by my oncologist. When I started back on it this week, my dose had been reduced to 5/day. The first month was pretty bad for me; D on at least half the days and nausea and fatigue almost every day. The final straw was a Memorial Day weekend where I slept for an entire day, had D on three of the four days and vomited for the first time since chemo. It was a relief to not have to take it for a week, and I'm just hoping that since I am on a reduced dose now that I won't be as sick again in the future. I'm super fatigued, but the nausea/D haven't returned so far. Fingers crossed!

    I'm so thankful for your posts because this can be a pretty isolating process. It helps so much to know that I'm not alone in going through this!

  • moderators
    moderators Posts: 8,185
    edited June 2019
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    Welcome, PJ_Seattle! We’re happy to have you here at BCO. But we’re sorry to hear about the issues you’ve had so far! Hopefully the new dose helps.

    We hope you find this to be a supportive place - you are definitely not alone!

    The Mods

  • Homemadesalsa
    Homemadesalsa Member Posts: 138
    edited June 2019
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    PJ welcome! Hope we can help.

    My MO and I refused to even consider Nerlynx until we saw the benefits from taking either budesonide or Colestipol in addition to imodium. Plus I started with 2 pills and added 1 a week. All that has made the last few weeks way lower drama than I expected. Now I'm just figuring out what foods work better or worse.

    You've been through so much to get to this point in your treatment, no need to suffer any more.

  • laughinggull
    laughinggull Member Posts: 516
    edited June 2019
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    Hi PJ, welcome. Sorry to hear about your ruined Memorial Day weekend. Sounds awful...let's hope that this time with the reduced dosage, and having already been on the drug, you get less side effects. We got diagnosed within months of each other. Let's hope we never get this cancer back.

    Homemadesalsa, you got this! I am still trying to figure out what foods trigger an episode of misery. I feel like one meal per day needs to include rice, pasta, oatmeal or potatoes. Let us know what works for you.

    Today I had another good day. I went to the plastic surgeon today and got my nipples done....yay! Looking forward to now get the tattoo and be done with everything. I was about to cancel the nipple surgery because I really didnt care about not having nipples. But now I feel happy to have them!

    Enjoy your weekend, everybody.

    LaughingGull

  • hapa
    hapa Member Posts: 613
    edited June 2019
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    PJ - sorry to hear of your troubles. I think many women have had better success with titrating up to six pills/day as opposed to starting off with that.

    I'm on day 8 and still no real D. I had a loose BM but that is kind of normal whenever I drink iced coffee for some reason. I'm taking no immodium or anything else for the D, eating my usual high fiber, heavy on vegetables diet. My main side effects have been fatigue and poor appetite. Both set in about 4-5 days in, taking 4 pills/day, I've been taking 5 pills/day since yesterday. My energy levels are pretty normal during the day, but then I crash out early in the evening. I've managed to move my bedtime back from 6pm to about 8:30 most nights. As for the poor appetite, no complaints about that except that maybe it's causing the fatigue. I do have a few pounds I packed on during treatment that can stand to go so here's to hoping for a silver lining. I have had some very mild nausea but that accompanied a migraine, which is also pretty normal for me. So nothing I am definitively blaming on the Nerlynx so far. Like LG and Homemadesalsa, this has been relatively drama free for me. I travel tomorrow and am hoping for the best.

    LG - I always thought radiation meant you could not get nipple reconstruction. I kept mine so I haven't looked into it too hard but that is what a few other members said they were told. Anyway congrats on your nipples. I got my implant exchange and am much happier with my recon now, though the nipple on my radiation side has had a rough time of it and is smaller and darker than it used to be. I'll probably do some fat grafting and then be done with it.

    Edited to add: the pharmacist from my specialty pharmacy said that if you didn't get D with herceptin and perjeta, you'll probably do well on Nerlynx. I don't know if he was basing that on patient reports or biology though.

  • beesy_the_other_one
    beesy_the_other_one Member Posts: 170
    edited June 2019
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    For those of us who will be following you all (expect to start Nerlynx in the fall), know that we appreciate your updates! Hapa, I found the pharmacist's comment particularly enlightening. When I started TCHP, I had pretty bad D but I was still taking magnesium, not thinking that wasn't helping my situation. Between backing off the magnesium (duh) and my body seeming to adjust to being poisoned, I had a much more "normal" situation the rest of my treatment, gastrointestinally-speaking.

    My MO at MD Anderson Houston is running a trial on Nerlynx at this time. They definitely now recommend starting with a lower dose and allowing the body to adjust. These tyrosine kinase inhibitors all seem to cause D. Many years ago, good friends of ours had a nine year old son dying from a Glioblastoma Multiforme IV (brain tumor) and the last treatment they tried was Lapatinib (likewise a tyrosine kinase inhibitor), which gave him awful diarrhea. He had soldiered through all the previous treatments but finally said he couldn't do the D anymore. I couldn't blame him.

    Hapa, I keep rooting for you to get that trip to Waffle House if nothing else!

  • hapa
    hapa Member Posts: 613
    edited June 2019
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    Aww, thanks Beesy!

    Well, its day 9 and the D set in after my morning coffee. Four hours before I catch a three hour flight to Houston, no less. No time to hit the Waffle House before I go to the airport either. I will indulge in Houston though, D or no D! I noted that coffee is one of the things you're supposed to avoid on Nerlynx, but they can pry my Starbucks cup out of my cold dead hands!

    I was having some mild stomach cramping yesterday which got a little worse last night so I'm not surprised. Appetite is still not great, but I did eat a full dinner last night. Cauliflower polenta with some veggies and edamame at True Food Kitchen. Also went to a book club meeting yesterday afternoon and ate some junk; chips, guac, vegan cookies, some bread and crackers and veggies with hummus. I don't blame any of the food.

    Ate a banana for breakfast this morning. I'll start popping the loperamide if I get any more D today.

  • Homemadesalsa
    Homemadesalsa Member Posts: 138
    edited June 2019
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    Oh Hapa I am eagerly waiting for the next chapter in your story. Hopefully low drama, with or without imodium.

    Update from my world: granola, yogurt, and blueberries make a nice base for the day. Burgers ok. Ice cream ok. More than 1 craft beer= not ok. I think Laughing Gull weighed in a few weeks ago with the same data point, but I tend to only learn experientially.

    Beesy welcome. I read some research reporting by you on another thread where you were accurate and funny. Bring it on! We need as much of those 2 qualities we can get.

    Oh and it snowed here last night. So over it. All melted now, but 11" at 8500'. Sure is green, though.

  • PJ_Seattle
    PJ_Seattle Member Posts: 34
    edited June 2019
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    Thanks for the welcomes, everyone! I'm glad I found this post, it has helped.

    Hapa, my MO tends to be of the "throw everything at it with full force and respond when something bad happens" school of thought. :) Your comment about a history of D with Herceptin and Perjeta definitely rings true for me, I did have it then . . . pretty badly for about a month when receiving it with Taxol, but only for a couple of days a week, it was predictable when it would come and how long it would last. So, I think that neither my MO or I thought I would get through this unscathed. But, I didn't think it could feel like I was back in chemo again, which is how I felt for those last 5 days before I was put on the break from it.

    Today is day 4 of the reduced dose, and it is much better so far. No D yet, and just a bit of nausea today. Fatigue is still pretty bad though.