Starting Nerlynx in May, 2019
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Beesy,
Thanks for your warm welcome. I am still trying to find out more about this drug and whether it is a possibility for me or not. The diarrhea makes me nervous, but it's also a significant SE of the other drug that my doc has talked about -- Piqray -- and so I'm scared of that one as well.
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Shetland, LFF, BevJen - I write this here because I can. As you know, there are people -like me- out there who lurk on the Stage 4 boards for various reasons. I just wanted to share my love and deep grief for Gumdoctor! Although I never had direct conversation with her, she along you other ladies were my beacon of light when I was prepping for my liver biopsy and awaiting the results. She will be deeply missed and long remembered!
Every "BeautifulSunset" I reflect on 'ABS' and now Gumdoctor will be a part of that moment!
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Shetland, I'm so happy to hear that has brought you to NEAD!
I am now 1/6 done with my 12 month course, with a 10 day break due to insurance approval glitches and another 2 week break coming up while I get a hysterectomy. Then I hope to get through the rest non stop and get it over with. I have found it fatiguing. I had a little queasy feeling a few times a week after starting, a compazine fixed it. I've also noticed stomach pains, off and on, and one blood test showed elevated ALT but in the next test it was back to normal range.
While I wouldn't say I have actual diarrhea often, I have had it a couple of times, but it's more that I do need to go 2 and sometimes even 3 times a day and often on the less formed side. Sorry to be graphic.
But my point is I wanted to suggest for anyone who has an extra $300 and access to their own bathroom- one of those bidet toilet seats from Costco, it's easy to install, you don't need to drill any holes or alter any plumbing. It can probably save you $300 in toilet paper over the years but much more importantly I like the physical comfort of a gentle stream of water to clean vs. the alternative, i've been really grateful that i bought one a few years ago (my son and I have both had IBS for many years). I thought it may alleviate some of the discomfort for those experiencing more diarrhea.
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my MO just sent a prescription off to specialist pharmacy for the new drug tucatinib. Waiting to hear if it gets approved either by insurance or fir compassionate care. Wish me luck/
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Frmthahart, yes to all you said about Gumdoctor. ❤️
Caiti, almost everything you report is similar to my experience: Big D, fatigue, queasiness (I describe it almost like the way morning sickness felt). During the quarantine, I've really avoided large salads and it's helped--lettuce and Nerlynx do not mix well with me and I dislike that most. I'm still a willfully stubborn Beesy and throw caution to the wind at times when I just feel like a salad, and pay for it every time. But since I know what will result and it's not life and death, if I just want a salad I eat a salad. Lettuce is the only thing I can absolutely say for sure will bring about the Big D. Sometimes, I have it and nothing I've eaten would seem to be a trigger.
leftfootforward, surely this time it won't be a fight as it was with Nerlynx--surely! But consider us rooting for you from far and wide! I've read some hopeful things about Tucatinib and mostly that the side effects are not so dramatic, so here's hoping for the absolute best response for you! I think of Tucatinib and Kadcyla as being like smart bomb drugs. The Trastuzumab takes the chemo drug right to where it needs to go. Dr. Dennis Slamon is a hero. We would all be in a much different place without his work.
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LFF - also rooting for you!
I may or may not be on my last month of Nerlynx. I am not ordering any more refills until I see my MO on the 28th. I started May 31 of last year, but I somehow seem to have three months of pills left on my rx. I stopped for three weeks for a surgery. Things don't add up.
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LFF - fingers crossed that you don't have problems with insurance approval! Thinking of you.
hapa - when I saw my MO in March I had just scheduled the delivery of my twelfth bottle. He left it up to me as to whether I wanted to stop at the one-year point, or take the rest of the pills. I chose the latter, it was only a couple of weeks more. I had one more refill at the specialty pharmacy, was happy to tell them I didn't need it.
Five doses left! I can count that on one hand!
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Frmthahart, there is a mark left on my heart by each of our departed sisters. It is good to acknowledge that though we only knew most of these people online, the losses are real. Hugs to you.
Leftfootforward, crossing everything that your drug approval will be quick and easy!
PJ three doses left now! Hapa, that's odd. Alternate reality?
Caiti, thank you and good luck!
So Beesy, about what you were saying on the Steam Room thread. Is it the case that the bouts of diarrhea come and go with no particular reason that you can see? Do I need to acknowledge that control is an illusion?
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Yes, Shetland, perfect way to say it: control may be an illusion for you as it has been for me. It's almost as if my body finally says, "enough." For awhile, I'll hum along with everything being "just right." There are times when I have a one-off incident, take some Imodium and things right themselves again. And then one day I wake up and even without lettuce or cabbage or brussels sprouts (I spent one night on the potty over them), it's just "enough" for my body. By the time I'm cramping after two days I know I need a break--and not a long one. A few times now I've literally stopped for just a day (maybe two days one time?) and restarted at the same dosage--and went humming along again . . . until it was "enough."
When I was fighting my MO about taking a break last November, he told me in no uncertain terms that it is a cumulative drug. The break doesn't stop the progress you have made. I say all this fully realizing that our circumstances are different, but if the choice is not taking it or taking it, I am pretty certain I know what I'd do.
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Shetland- I will second what Beesy said, that was definitely the case for me. Even during my last couple of weeks I had two days of D and one last cracked open fingertip, totally random. Someone in the FB group called them 'whack-a-mole' side effects, and I thought that was a good description!
Yesterday was it! No more pills. I am feeling like I really accomplished something with this, there were definitely times that I wanted to give up. I will continue to check in on this thread, so I see how things are going for you all.
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Congrats, PJ! So happy for you, and I'll look forward to a celebratory lunch with you (eating whatever we want) when the world rights itself and I'm able to get to Seattle to visit my sister and her family. Do stay in touch and enjoy a life without "whack-a-mole" side effects!
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Congrats PJ! I look forward to joining you in not taking pills.
I've had an uptick in the big D lately. Again, no urgency, just soupbutt. I have definitely not been eating my normal diet lately, eschewing home cooked high fiber plant based leafy things and lentils for taco bell and donuts. Bleh. It seems like when I eat the stuff you're not supposed to eat on Nerlynx I do better.
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Good for you, PJ! You did it!
Well, hapa’s term “soupbutt” is a pretty good description. I’m at my wit’s end. Sorry to be graphic but here goes: The stool count per day is only 1-4, so it is not even grade 2 diarrhea. However, the consistency is very very loose. Once in a while there is a somewhat formed stool and I think things are getting better, but it always relapses. For days and days and days. I could just live with it except the diarrhea makes me feel so wiped out and it depletes my potassium. I supplement slowly with dissolved potasssium powder throughout the day and also consume potassium foods. I typically take 2 Imodium early in the morning then go back to sleep, and another 2 Imodium later. Budesonide every night. My diet is just normal, reasonable, healthy. I’ll get an idea that maybe a certain food is bad, so I will cut out oranges or wheat or chocolate etc. but nothing I do or don’t do seems to matter. I live in fear of getting my drug taken away or lowered, so even though I want help I don’t feel completely comfortable bringing it up. My onc is on my side, but the trial gods loom over us. Maybe I do need to lower. Has anyone had success on just three pills per day? I am on four right now. Does a break re-set you?
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Shetland, I am not on FB but one of my daughters joined the Nerlynx FB group for me. I remembered reading of a woman with MBC on three pills daily with success, so I just went and did a search.
This is what she said:
I have MBC, that is breast cancer that has spread to other parts of my body, brain, liver, lungs and lymph nodes. I have been taking Nerlynx since August 2017. I started with 6 pills and because of the side effects was taken down to 3. Let me tell you the benefits of three. I have had brain MRIs and CT scans of my entire body every 3 months and NO New Evidence Of Disease!! Without this drug I would not be here today I Have HER2+. My family and I are so grateful for this drug. Yes side effects suck but, I am alive. I appreciate every day I have. I wish they would do a study on those of us Stage IV but my oncologist says they don't do studies on us. This drug saves lives!
When you ask, "Does a break re-set you?" do you mean does it help your body return to normal function? The answer is YES, and fairly quickly. My MO told me early on that this is a cumulative drug and breaks do not impede effectiveness (in other words you don't lose ground). As I've mentioned before, I am able to stay on four pills but after about 2 ½- 3 weeks, suddenly things go south and if I don't take a break for at least one day, it goes from bad to worse and I PAY for it, to the point where I have so much D that my insides hurt. It sounds crazy, but if I just skip one day, it makes all the difference in the world.
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Thanks very much, Beesy. I guess I have four options: Live with it. Tweak the anti-D meds. Take breaks. Reduce dose. I will talk to my onc this week, hopefully without the trial nurse in the room and with DH on FaceTime.
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Shetland - if you want to talk to her without the trial nurse in the room, just say so.
I have less than a week left on Nerlynx. I'm interested to see if anything changes once I get off.
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I saw my onc and we talked about the continuing battle with diarrhea. She chooses option #1 — Live with it. My protocol is working really well, and she does not want to rock the boat. She said that she wasn't sure a short break would help with the D, but gave me her blessing to skip a day here and there it if I wanted to. So far I have not. I did speak with her without the trial nurse, and she reassured me that I am not in danger of being removed from the trial. The sponsor already tried that at the beginning, and she got on the phone and told them “there was no way in hell they were taking me off because this is the right treatment." Wow.
She is mostly concerned about my weight. I don't know how to gain without upsetting my digestive system.
I know many of you are finishing up your course of Nerlynx or moving on, so I want to say thank you now to hapa, Beesy, Hart, PJ, Leftfoot, and anyone else whose name my chemo brain is not remembering, for your emotional and practical support. You all helped me through a really difficult time and I am very grateful.
It has actually helped me to hear from some of you that the episodes of D have a randomness to them because now I am less frustrated trying to control something I can't. I have given myself permission to be more relaxed about the potassium supplementation, too, and my last labs were normal.
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hapa, congrats on finishing (or being close--not sure when you finish)! Please do report back to let us know how you feel without Nerlynx. When I took the six week break in November, my system immediately righted itself. Are you coming to Houston for that appointment you mentioned earlier? I was at MD Anderson last week for a follow up and it was like a ghost town. My MO says they are only able to see 50% the patient load they were pre-Covid 19.
Shetland, I am glad to hear your labs were normal! Regarding weight, are there things that align more with the BRAT diet (thinking more carb-y things) that would help you keep weight on or help you gain but not encourage diarrhea? I know you made reference at some point that you're pony-sized, and constant diarrhea would make it hard to keep weight on. I'm 4'11" and a normal weight, but even my MO remarks every time he sees me that it's remarkable how stable my weight is given the amount of diarrhea I've had. My entire life I've said that were there a famine, I would be the last person alive because my body needs so little food to survive. Now I have proof.
I'm so glad your MO is fighting for you and most importantly, that the drug is working! Reading on the FB Nerlynx group is so encouraging to see what it's done for so many! LFF, we're all rooting for you that Tucatinib is that drug for you.
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Beesy - I am probably going to cancel my appointment at MD Anderson. I would have to fly there, and then when I get back I cannot go to work for two weeks, during which time I either work from home or take PTO. I am a process engineer on a manufacturing line, so work from home isn't terribly effective, and I don't want to burn an entire year's worth of PTO on one doctor's appointment where all they'll do is a TSH and Free T4 test, breast exam (which I just got from my MO two weeks ago), and tell me there's nothing they can do about the continued discoloration and capsular contracture I'm having as a result of radiation. Honestly, considering none of these side effects are treatable besides the possible thyroid damage (which I show no signs of), I don't know why they bother with checkups.
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And I'm done. Took my last pills yesterday, got wicked soupbutt a couple hours later. I will not miss that. It definitely got harder for me as it went along, the start was pretty uneventful but after my break for surgery things were still not terrible but I did get some diarrhea.
Shetland, good luck with this! Hopefully you're one of those people who have a rough start but level out! I was the opposite, but thankfully I get to stop. I'm keeping this in my favorites for a while at least. I have a feeling Nerlynx users will be few and far between from here on out since early stage people are doing Kadcyla now.
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hapa, I don't blame you one bit for not coming to your appointment here, as it doesn't sound like you'll learn anything new. The possible thyroid damage is from radiation? That was never mentioned to me, but as I think about it (and I can send you a photo of my radiation plan), they definitely hit close to that area. I felt I had no choice but to do radiation and felt that at MDACC I had very high tech treatment, but that side of my body stiffens up and I have to constantly stretch throughout the day. I chose no reconstruction but the skin will never be the same.
To your point that things got worse for you over time, hapa, I've gotten to the point that I end up having to take one day off about every two to three weeks. I don't do it if I'm humming along merrily, but it seems that after about two weeks, my body literally revolts and the only answer is to take one day off (I know this because no amount of Loperamide or Lomotil will stop it). Then I restart after one day off and I'm fine again for another few weeks. I came clean with my MO who is very particular and is running the Nerlynx trial right now at MD Anderson--and he had no issues with it--to my great surprise.
Congrats on finishing--you finished the race! If you're ever my way, let me know and we'll do lunch--something with cherries and lots of lettuce. Or maybe better yet: let's do Waffle House!
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Hello! I'm checking in to see how everyone else is managing.
hapa - Congrats! Welcome to the club. I hope you are free of the D and eating everything you couldn't! Things got worse for me at the end as well, starting month 10.
Shetland - I hope things level off and become more manageable. I think your plan to just accept the side effects as the way things are is probably best. It's the only way to get through this! I carried loperamide, lomotil, cholestipol, and zofran with me at all times while I was on it. I also know that breaks do really help, I took a few. My MO didn't have a problem with it at all.
Beesy - I'm glad to hear that you have found a routine that works for you. Hopefully that will get you to the finish line! You are down to a few months left at this point, yes?
And, just a quick update. I was able to eat raw veggies and fruit right away, so am enjoying lots of berries and salads! I also feel like the brain fog is lifting. I'm still having issues with my energy levels though. But, I was having those issues before Nerlynx, so, still trying to work through that. The best part is not taking so many dang pills every day.
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Beesy - I'm sure I'll get back down to Texas again, just not sure when. But I'll hit you up when that happens. We can eat ALL THE THINGS!!!
PJ - thanks! I am also glad to be taking less pills. I put away my pill organizer now that I'm only down to anastrozole.
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Hi y'all! Checking in after a little over a month off the Nerlynx. My run up in SEs was so gradual I had hardly noticed them but having stopped I can say that I was definitely having some GI issues from the Nerlynx. My BMs are more regular, more solid, less explosive, and less frequent. I have gained five pounds even though I'm eating less crap and less often. It seems like my GI tract has just slowed down (a slow GI tract has always been a low level problem for me, one which Nerlynx seemed to have solved while I was on it). I'm not feeling any less tired though, I guess that was the AIs.
Beesy - I have a checkup scheduled in Houston for September and I'm pretty sure I'll be able to go. My company has dropped the travel ban for us since we live in the hot spot right now. Plus, they found it was getting nearly impossible to operate without making so many exceptions as to make the ban itself pointless.
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hapa, good to hear from you! Glad to hear your GI tract has recovered. In November, when my MO took me off for six weeks, I was astonished at how quickly things returned to normal after months of complete chaos, gastrointestinally-speaking.
PM me your schedule when your trip gets closer. Thanks to Covid, I have zero going on in September!
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Hi there, Nerlynx friends. I would like to ask you about a different sort of side effect. Setting aside chemo curls that typically last for up to a year, did anyone have the hair on their head get curlier while on Nerlynx? And did anyone experience increased or darker facial hair? Or new hair other places like the backs of hands and fingers? This has been happening with me. At first doctors were calling it hirsutism, where a woman gets male-type hair growth due to excess androgens or increased androgen sensitivity. But mine is not really the typical pattern, and the cancer center endocrinologist and a local dermatologist both said it looked more like hypertrichosis (excess hair growth not caused by excess male hormones). It is high on my cheekbones and across my nose, for example, in addition to the usual places. There are even a few eyelashes in the wrong place. So this week I had a very interesting conversation with a dermatologist and dermatology nurse practitioner at my cancer center. They told me that sometimes they see patients on EGFR inhibiting drugs (neratinib is one) with hypertrichosis like mine, and curlier hair on their head. Not even my sharp oncologist had this on her radar.
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Shetland,
I definitely have no curl in my hair (never did, even after chemo), and no excess hair. But boy have I had nail issues (hands and feet), and some skin issues, which are more common. When I read your question, I just had to look to see what the Internet said, as I'm sure you've done--and there's plenty on the topic. But in all my reading, I'd never run across that side effect previously. Have you looked at the Nerlynx Facebook group? I went and searched on that group with the keyword "hair" and found many women who complained mainly of arm hair (some face) they've never had in their lives.
hapa was in Houston this week for a checkup so we had lunch on Tuesday! My WBC's were still very low when the world turned upside down, so for all these months I've been very cautious. Getting out and meeting someone who made me laugh often during this last year was a real treat.
Shetland, I'm hoping that your not mentioning gastrointestinal issues means you are handling that part better. I'm still up and down but have come to terms with it and things are more "normal" than not these days.
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Thanks for that info, Beesy. I would not have found it as I am not on Facebook. It is interesting to know that many women mentioned arm hair because that is the one other place weird hair has grown. The nurse said that was also a typical place. There is nothing about hypertrichosis on the official list of neratinib side effects. It was only when the dermatology nurse clued me in to using EGFR as a search term that I came up with anything in the literature. But I would not call it plenty; just a few brief mentions of it among the more common nail and skin issues. Did I miss something other than FB? I hope your skin and nail issues are not too bad, and that you nurse/doctor is helping you with them.
Gastro issues, yes, “have come to terms with it”. They are at least routine, and I am not stressing over them any more. As long as I keep the daily count down with enough Imodium (and that varies), and keep my potassium level good, I won’t get in trouble with the trial nurse. I do think my body finally adjusted to the drug somewhat. I went off the budesonide and am still ok. Being a little more careful about what I eat, but I refuse to just eat a bland diet.
How great that you and hapa got to meet!
Thanks again for the info!
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Shetland,
When I searched EGFR drugs and hypertrichosis I found a fair amount of information--only because you gave me the search terms. There wasn't as much on Neratinib specifically. I then searched as EGFR tyrosine kinase inhibitor and hypertrichosis. A lot of what I found was old, but it's clear that all the tyrosine kinase inhibitors can cause this and other odd skin and nail conditions. I am always impressed when a doc (in your case, the dermatologist) is a true diagnostician and realized what was going on with you. This article about the cutaneous side effects of EGFR and protein kinase inhibitors says that "Although effective in the treatment of many cancers, EGFR inhibitors often result in adverse reactions in the skin, which occur in at least half of treated patients." HALF of patients? I definitely have the skin and nail issues, but half seems high.
I am glad to hear you are doing better overall. It's amazing how much things have changed since I first started reading about Nerlynx dosing until now--docs have finally realized that most women need to titrate up and they've also come to realize that six is not a magic number (it's probably just the most they can give you without killing you). Honestly, the most I ever got to was five (and very unsuccessfully). I went down to four and continued to have so much trouble that I went down to three "for awhile." I still have enough trouble I've never gone back to four and my MO (who runs the Nerlynx trial at MD Anderson and is not Mr. Flexibility) has come around to think that for a 4'11" woman at a normal weight, that's okay. I have read of women with MBC taking three Nerlynx daily who before starting the drug had brains with innumerable lesions but are now NEAD on three tablets daily. That convinced me that three tablets is better than zero.
I hear you about refusing to eat a completely bland diet! For me, my main trigger is lettuce or uncooked spinach, but sometimes something which you would consider bland will trigger the D--there is no rhyme or reason sometimes. I am overall doing much better than I was earlier on. I still take Imodium daily but am grateful for the normalcy I do have.
It was great fun to meet hapa! She kept us in stitches from the time she joined this thread and a few times I literally almost lost the coffee in my mouth reading here because of laughing over her comments.
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Yes, exactly — without the substituting the term EGFR for neratinib, one does not find the information. Here is an article (that you may have found) with a good overview. It includes the effects on hair. It says that “EGFR receptors are localized to basal cells of the epidermis, hair shaft, sebaceous glands, and the hair follicle outer root sheath.” AHA! As far as skin, it notes that “Given the predisposition for papulopustular eruptions to the face and V-shaped area of the chest, is it also hypothesized that ultraviolet (UV) radiation is thought to likely play a role in predisposition to EGFR inhibitor side effects. EGFR has found to be upregulated in keratinocytes with UV exposure [6], and EGFR inhibitors have also been shown to increase the risk and severity of radiation-induced dermatitis [19, 20]. Notably, however, there has not been any proven benefit of sunscreen to prevent EGFRI-induced rash [21].“ So I guess protective clothing would be best. Maybe that is why I do not see much in the way of skin trouble. Thinking about your nail trouble, if it is fingernails, do you wear SPF gloves when driving or spending time outside, Beesy?
EGFR Inhibitors and Cutaneous Complications: A Practical Approach to Management
https://link.springer.com/article/10.1007/s40487-017-0050-6
Yes, I was very impressed with the knowledge of the cancer center dermatology people. When the nurse practitioner first came into the room, I was a little disappointed and thought, oh well, the doctor will come in soon. But the NP immediately saw what was going on with me and what I could and could not do about it. The doctor came in and agreed. This new information was quite important to me. It revealed that the problem was likely not caused by my time on the anti-diarrheal gut steroid med budesonide, which I recently stopped thinking it was causing hirsutism, and that has implications. First, it means that laser hair removal would be constant and expensive, since I am still on the causative agent, neratinib. Too bad I just paid for a laser consult, but at least I did not do a treatment yet. They recommended vaniqa cream with or without shaving (or threading which is not available during covid restrictions). The other important thing is that if budesonide did not cause hirsutism, it is less likely that it caused my adrenal insufficiency when withdrawn. (It is not supposed to have systemic effects.) That means the endocrinologist needs to rule out other treatable causes. Finally, it just helps me mentally to understand what is going on. This explanation rings true, and now I know what I can change and what I must learn to live with.
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