Starting Nerlynx in May, 2019
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Checking in for the week.
I had an entire good week with no D last week. And plenty of veggies, fruit and whole grains. Yay!
Just had a late breakfast of oatmeal and bananas with almond milk. Homemadesalsa don’t know about your granola but for me oatmeal always saves the day. I can tolerate up to one beer I think
Best wishes to all those having fatigue hoping it’s short-libe
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hapa we are looking forward to hear from your trip to the waffle house
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Beesy, why would you consider neratinib if you are hormon negative? The data presented by PUMA to FDA show there is only a transient effect, please see the figure below. I am curious as I am hormone negative myself and I could not find a good argument to make me start it.
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Homemadesalsa, if you were reading someone's accurate research reporting, I suspect you were reading something Beesie wrote (I call myself "the other Beesy"). We both chose our usernames based on childhood nicknames--hers came from the meaning of her first name, mine came from my maiden name, which ends in BEE. When I hastily created my username, I never thought to look to see if there was someone else with the same name spelled differently so as not to cause confusion--or in my case, appear more intelligent than I am! Beesie has a cute Bee as her avatar with a cow crossed out (as in "I'm Beesie, not Bessie"). My avatar is Dash from the Incredibles because I've been told I bear a striking resemblance to him as my hair is growing back in, though I suspect Dash didn't color his hair 😉 ! I've had cowlicks along the front of my hairline all my life, but now that I don't have much to weigh it down, it sticks straight up, just like Dash's, despite all my efforts to use gel stick it down.
Keep up the good work ladies--you're inspiring those of us who will be following you! As I was typing that, it made me think of the ladies with HER2 positive cancers in the early 1990's who were literally dying but were willing to try Herceptin when it was first developed. The concern was it would be toxic to other organs so they gave them the amount they'd give a mouse. Even so, their tumors melted away before everyone's eyes. One of those ladies in the first group to try Herceptin was within hours or days of death but had a great response to Herceptin. She has since moved to Houston and my MO is her doctor. Apparently, she's declining now but has led a great life until fairly recently--over twenty-five years!
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Hello lovlies!!
I made it to my hotel in Houston safely on Sunday. No blowouts on the plane or anything. I wound up going out for dinner that night at some hipster ramen joint and ordered a side of sweet and sour brussel sprouts to go with my ramen. I didn't realize until the waiter set them down that the brussels were deep fried. I knew they would be trouble, but I ate them anyway.
My stomach started making muted threats around 4am the next morning, but the exorcism didn't start until after I had my morning coffee. No urgency or anything, just more upset stomach and when I went to the bathroom...soupbutt. I was still having some stomach issues so I stuck around my hotel and went two more times before I started feeling normal, around 10am. I grabbed a banana on my way to go shopping and was thinking maybe I should take all the nerlynx diet tips more seriously now.
That lasted until lunchtime rolled around and I went for Indian food, lol! Much to my surprise, there was no immediate revolt, so I just went on with my shopping. Dinner was some lousy veggie and egg bowl at the hotel restaurant. I was fully expecting to pay for my indiscretions by this morning at the latest, but that never happened, even after my morning latte, even after eating a bunch of greasy hush puppies for lunch. In fact, I haven't had a BM at all today.
I still have not made it to Waffle House. I go up to six pills on Friday. Fingers crossed for another good blowout next weekend!
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Deep-fried brussel sprouts for dinner followed by Indian food....ha ha ha you are a fearless woman.
I am having a good week, the second one in a row. Today it's whole wheat pasta with turkey carbonara for me.
Take care everybody!
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Sorry to say I am taking a break from Nerlynx. After the longest 28 days I can remember, Onc agreed it was time to stop. I started with 4 Nerlynx, Lomotil, Coletstipol and Imodium as needed. Was having 8 to 16 episodes of D a day with occasional stomach cramps and nausea thrown in for more fun. I stuck to the BRAT diet with oatmeal. My blood work was ok. I did get IV fluids a few times and had 1/2 a gatorade each day. Stepped down to 3 pills after two weeks and added Budesonide each morning, still no relief. Onc wants me to consider Nerlynx again in 3 months. I finished Herceptin/Perjeta in April, so technically have 2 years from then to resume treatment according to the brochure.
If I give this another try in the future, Onc suggested start with 2 Nerlynx the first week and start the Budesonide right away so inflammation doesn't develop. Good luck to all of you and I am really looking forward to a salad next week after 28 days of occasional cooked veggies..
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Hi rwhite,
Thanks for the update. Very sorry to read that you had such a hard time. You tried. But 8 to 16 D episodes per day, plus cramps plus nausea is no way to spend an entire year. Take very good care of yourself and enjoy that salad. Best of luck with your next step, and we will be here if you come back.
Its also cherry season....if you get some think of me
LaughingGull
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rwhite, I'm sorry to hear you've had such a horrible time on Nerlynx. Did you titrate up to six pills or start with all six from the get-go?
I still haven't had a BM since my one episode of diarrhea on Monday. I don't know wtf is up with that. I haven't been this irregular since college. I go up to six pills tomorrow.
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Hapa I bet the 6 pills will take care of your problem. ...just sayin'. Add a couple of beers and I'd be guaranteed. Things are pretty stable and happily boring on this front. But it is in fact cherry season...
rwhite- sorry to hear about your experience. I hope you stay strong regardless.
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Today is my first day of six pills, I've been on Nerlynx for two weeks now. I finally had a BM, but no D. I gave up on waiting for the D to kick in and went to Waffle House for lunch today. I took a pic but I can't post it at work because the rest of my camera roll is boob pics and I don't want to get fired. I'm feeling very slightly nauseous. I'm not sure if it's the meds or the extremely large and unhealthy lunch I had, but I think it's the meds. I saw my MO today who was delighted to hear that I am doing so well on this medication. That's about all I have to report.
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How are we doing, ladies?
I am starting what I hope will be another good week. Last week was totally normal, no D at all. One day I took an Immodium by mistake, and nothing else.
Cheers,
LaughingGull
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"I took a pic but I can't post it at work because the rest of my camera roll is boob pics and I don't want to get fired." --hapa
I literally spit coffee out of my mouth as I read this---bad timing on my part! Glad you made it to Waffle House finally!
rwhite, sorry to hear you're having to take a break, but hopefully the second time will be very different for you. To the rest of you, you're keeping us very entertained and I've learned a valuable lesson not to have liquids in my mouth when starting to read this thread.
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I had an uneventful weekend with no D whatsoever. I am four days into the six pill/day dose and thus far have taken no immodium or other anti-diarrheals unless you count the banana I got at Starbucks last week. I'm still a little tired. I'm sleeping around nine hours a day, but during the day I feel fine and can do all the things, so long as I keep moving. If I stop and sit on the couch to watch TV or something I drift off though. I'm like a puppy. Plenty of energy, but when I stop moving, I just fall asleep wherever I am. Also kind of low appetite. Anybody else having poor appetite on Nerlynx? I get hungry less often and when I eat I rarely finish my plate. I haven't lost any weight yet so I'm not too worried about it. I'm wondering if the poor appetite is why I haven't been having regular BMs.
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Hi there, reading this thread with interest. Triple positive, double mastectomy, 12 Taxol / Herceptin, 3 3x/dose Herceptins, 3 Kadcyla. Then the chemo slayed my nerves, terrible neuropathy. Monday my MedOnc asked me to look into Nerlynx because it targets Her2 without causing neuropathy, at least according to manufacturer.
I have autism and autism gut which is a very sensitive intestinal tract that I carefully have managed my entire life. Runs toward constipation. The thought of messing with it is unimaginable but I do want to eliminate any Her2 cancer cells that might be lingering. 2mm left in breast and 6mm in 1 sentinel lymph node after surgery. Also have diabetes. So at very high risk.
Why exactly does Nerlynx upset the stomach and intestines? Does it cause permanent damage?
Sounds good to start low dose and work up and be able to stop if it is intolerable.
Tried 8 days of Letrozole and that was a disaster but just found out last night 3 cups of organic soy milk a day results in exact same benefits without side effects or any problems. What a lifesaver that is going to be!
Have any of you read the book
Breasts: The Owner's Manual: Every Woman's Guide to Reducing Cancer Risk, Making Treatment Choices, and Optimizing Outcomes by Dr Kristi Funk
https://www.amazon.com/gp/product/0785218726/
I saw an interview with Dr Kristi Funk last night and was blown away by her vast knowledge and empowering help for breast cancer patients. I ordered her book last night.
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Hi Cascadians,
I don't know what autism gut is, but I would say my GI tract had always been touchy, and leaning towards constipation much like yours. I had been managing that with a very (and I mean VERY) high fiber diet for the last 10 or so years with some pretty good success. I had more constipation than diarrhea on chemo and it has been much the same on Nerlynx. I have had only 1 episode of diarrhea and that was triggered (I think) by a very greasy meal, which can trigger diarrhea for me normally, as I rarely eat greasy things. I was very worried that I would have more problems with it during my treatments but the high fiber diet continued to work for me through everything. I would just eat some extra bananas whenever things were looser than I liked and watermelon when things were stopped up. I felt like I got off much easier than I expected.
My MO told me that any side effects I have on Nerlynx would go away once I stop taking the pills. I have had very little issue with this medication. The specialty pharmacist that is managing my dosage told me that people who don't have much diarrhea on Perjeta tend to do well on Nerlynx as well. And another pharmacist told me that most people start getting D at five pills/day, and not to increase the number of pills/day until everything is under control. So starting low and working up is a good idea. I am up to six pills/day and I'd say my GI tract is functioning pretty normally now.
I also had some neuropathy on TCHP. It was actually not terrible during chemo, but after surgery it came on pretty hard in my feet. I wonder if the neuropathy was aggravated by not exercising and also by walking around on my cold hard tile floors all day (since I wasn't leaving the house). I went out and bought some cushion-y flip flops to walk around the house in but by then the damage was done. I got acupuncture, took supplements (B12 and B6), increased my protein intake, but none of it helped. Finally when I was able to get back out running again the neuropathy cleared up. I don't know if it was actually the running or just the passage of time, of course. I also found it wasn't as severe if I kept my hands and feet warm, so I would always wear socks, and gloves if I was outside, and dish gloves if I was cleaning. Neuropathy is really hard because it lasts for so long and it's hard to get rid of. I'm not convinced anything I did actually helped, you may just have to wait it out. Best of luck to you with the neuropathy.
I hope all of this helps.
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Hi cascadians,
I just saw this article about Neratinib, it touches on the diarrhea mechanism, I copied the relevant part below.
LaughingGull
https://www.cancernetwork.com/breast-cancer/considerations-when-initiating-neratinib-breast-cancer
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The mechanism of neratinib-induced diarrhea is likely due to its effect on epidermal growth factor receptor (EGFR), similar to that of erlotinib; EGFR mediates calcium-dependent chloride transport, and blocking EGFR can subsequently induce secretory diarrhea.[11] Because of the significant incidence of diarrhea with use of neratinib, the original FDA labeling for the approval of neratinib included a recommended prophylaxis of loperamide scheduled for 2 cycles (2 months total), beginning with the first dose, and continuing as needed thereafter.[8] Optimal prevention of neratinib-induced diarrhea is being studied in the phase II CONTROL trial.[12] Early findings (Table 2) suggest that adding colestipol to loperamide beginning with the first dose of neratinib results in the greatest reduction of grade 3 or higher diarrhea incidence (primary endpoint) and severity compared with what was seen in the ExteNET trial.
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Thanks Hapa, all your info helps. Very encouraging that you are managing well with Nerlynx. I need to find out why exactly it disturbs the intestines and if there's any permanent damage. Been reading about how important our immune system and microbiome and gut is to naturally conquering cancer. If I decide to try Nerlynx for sure I'll start with 1 pill and work my way up. Only makes sense. Need to research more how it targets Her2 and what exactly the "irreversible" means. Thank you! So far Nerlynx is the only Her2 targeting drug that doesn't list neuropathy as a side effect.
My MedOnc is putting pressure on me to do something by next treatment date. Just found out I can drink 3 cups soy milk / whole food organic soy products instead of taking Letrozole, yea! Need to find equivalent doesn't-make-you-sick-and-tired for Her2.
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Cascadians, I don't know of anybody who got neuropathy from herceptin alone. It is listed as a side effect because in the trials, herceptin was given along with a taxane, which definitely does cause neuropathy. Have you talked to your MO about herceptin and whether it causes neuropathy? For me, I had almost no side effects from the herceptin only infusions. I think I felt woozy for one infusion and that ended when the infusion was over or shortly thereafter. It was probably just anxiety. I was still on herceptin when my neuropathy went away.
Nerlynx has multiple targets besides Her2. Irreversible doesn't mean the side effects are irreversible, it means the mechanism by which it binds to cells is irreversible (I think).
Do you have an article for the soy milk recommendation? I would be interested to see that. I drink plenty of soy milk and eat tofu, tempeh, etc regularly, and I have since I was a kid. I've also had an extremely healthy lifestyle since I was a teenager, so I'm not convinced any of these lifestyle or diet changes are going to be effective on my cancer.
Good luck with your decision and your research. When do you see your MO again?
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Neuropathy is listed as a side effect of Herceptin. If it weren't I'd be back on it. Next MO appt is July 8th. I feel too pressured even though my MedOnc is fantastic and I greatly like and admire him. I will write my MedOnc a message describing how I feel and my reasoning.
I don't like mucking around with zero idea of what's actually happening in my body so will demand liquid biopsy and various marker tests. If there's no sign of cancer there's not so much pressure to do something immediately while my body is still reeling from 7 months of chemo and surgery. Need nerves to heal before I try Kadcyla again. I could live with its effects except for the worsening neuropathy. If I don't actually need chemo I'd prefer to build my body back up, keep losing a lot of fat and build muscle and bone, and strengthen my immune system to fight cancer. I asked MedOnc if he's seen any miracles and he hedged but did say he sees the most promise in immune work.
Doing lots of supplements and foods that have shown scientific evidence of cancer killing and hindrance, adding more things every day as I research. Totally revamping diet which was good but now giving away all Teflon, ordered cast iron skillets, tofu press, etc. Going radically anti-cancer for the rest of however many days left I have on earth.
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The soy info comes from Dr Kristi Funk's book, Breasts: The Owner's Manual, pages 55, 56, 57, 58, with study citations. I'll type it up when I have time -- it's long and extremely valuable. Went to Costco yesterday and found organic whole soy bean 'milk' but it had sugar so today will find a brand that does not have sugar. Sugar fuels cancer so sugar is out out out. Tofu is good and Costco had organic whole bean tofu, bought some, looked up how to make it, bought tofu press, will be eating a lot rest of life. One can marinade it in all kinds of tasty good things and make many recipes. Apparently it helps if one has been eating soy for years which I have, just didn't make dishes from scratch with it, bought it already included in other things.
Puma's Nerlynx Edges Out Novartis' Tykerb in Breast Cancer Trial
https://www.biospace.com/article/puma-s-nerlynx-ha...
Interesting article about nerlynx. Good news but most can't handle this drug: " ... net product revenue declined in the quarter as a result of an increase in patients discontinuing treatment with Nerlynx."
So glad for these forums where one can read first-hand experiences and get very practical helpful life saving advice! Thank you.
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Here you go . . .
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I'm picking up soy milk on my way home from treatment today. I had no idea. The pathology report from my biopsy showed ER 100%
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Dawn, isn't this awesome! Make sure it is organic whole soybean milk. Whole Foods brand 365 might have no sugar. I have diabetes so must avoid sugar, beside sugar being a potent cancer fuel. Thrilled beyond belief because after 8 days I could not handle Letrozole. My tumor was 98% estrogen positive, yikes. Yours 100% !
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That is awesome. I hope it works as well on postmenopausal women. I'll try anything to help me beat this beast.
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Here is a video of Dr Kristi Funk discussing soy benefits with Chris Wark. Start at 35:12 for the soy info. Whole interview is very helpful.
Why is this relevant? Because NERLYNX works BEST with Her2 Estrogen+ breast cancer.
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Very informative. I picked up soy milk at my grocery store. It's unsweetened and organic by Silk.
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I got 5 boxes unsweetened organic soy milk at Whole Foods, 365 brand. Delicious! And a total shock at Whole Foods -- the prices are now very low. What a difference! Plus discounts if you're Amazon Prime since Amazon bought Whole Foods. Prices are so excellent I decided today to make Whole Foods my primary store. Lots of fresh organic produce stuffed with anti-cancer qualities to fight to survive.
Joined the Nerlynx support group on Facebook. A lot of women say raw veggies trigger the diarrhea on Nerlynx. Planning to exist on salads and steamed / stir-fried veggies so wondering how that will work out.
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Cascadians, did Dr Fink recommend a half cup 3 times a day? The women in the TX study drank 3 servings of 12oz a day.
I'll have to get to whole foods. I'm a prime member and forget they offer a discount. I just went to the store I passed on my way home today.
Thank you for the information 🤗
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"Strive to consume 2 to 3 servings of soy food every day; whole food soy far outranks processed, and fermented whole soy products like tempeh, miso, Tamara (a fermented soy sauce) and natty are the best." .... Video: Serving = 1/2 cup, do 3-5 servings of soy per day but never go above 5.
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