Starting Nerlynx in May, 2019
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Thanks Laughing Gull. I appreciate your in-depth responses so much. I am much in the same boat as you- similar staging but older. Completed chemo/ radiation/ and a year of HP as recommended by the MO. At first I was very against taking Nerlynx due to the SEs, but my MO found the research saying that colestipol and buosinide (?) do the trick, so convinced me to start. He wants me (at 130#) to go with 4 instead of 6, although there is no research to support it. But I'll go with it. Sounds like, for a lot of people, the SEs begin at 5 pills?
The bottle arrived last week and I am just waiting to do a long-procrastinated colonoscopy (Thursday) in order to start. Insurance is paying, no hassles. Amazing to me how easy it has been to deal with Blue Cross of Idaho! Sortof a surprise, but I think they want me to stay away from mets.
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Thanks so much again, LaughingGull, we really appreciate your in-depth analysis.
As for the nerlynx tablets, are they big? My wife has difficulty to swallow those pills and even for tamoxifen, we had to switch to 10 mg pills for two each day. If the Nerlynx tablets are big, that would be another difficult aspect to consider.
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The pills are really tiny, so at least there is that, Lilych
One word about the ASCO post you sent a link for, with an editorial by some Stephen Voigl. The same guy published another article on Nerlynx and he suggested that Puma should suggest a "tolerable schedule" i.e. ramping up the number of pills little by little, which seems to be what other doctors are suggesting and makes sense.
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Well my Nerlynx just came and I picked up my Busonide. Need to stop and get some immodium as well. My plan with the Onc is to take the Busonide (instead of Colestipol) in the morning, Nerlynx at 6 pm, and then my Arimidex before bed. However, he did not tell me when to take the immodium. Should I take it with the Nerlynx or wait to see if I get the D? Gull when do you take your Nerlynx?
Lilly, I am not sure I can answer your questions. Based upon what my onc has said and from what I have read, Nerlynx was originally created as a preventative drug for HER 2+ Breast cancer. It works best for those of us with both ER/PR + plus HER2 + but they are branching out to trying it on others as well from what I am reading. I did not have any node involvement and am currently cancer free. I was diagnosed in January, 2018 and had a lumpectomy in March, 2018. I started Taxol Chemotherapy and Herceptin 1x per week for 12 weeks and then went to Hercepting 1x every three weeks and finished up on 4/3/19.. Perjeta was never mentioned as a treatment options from either of my oncology consultations. I opted out of taxotere as one of my opinions felt that I did not need the stronger chemo. I am nervous about Nerlynx, but my current Onc feels that I should try it since I am young to reduce my odds of a re-occurrence. I figure if I can't handle it, I will stop. In my cancer center, I am only the second person that will be on the drug as he only prescribes it to those +++ Breast Caner Patients that have completed 1 year of Herceptin. The other person just finished their year and it was a male with triple positive breast cancer. If you decide to take the drug, please come back and ask all the questions you like.
I will keep you all updated and may be reaching out to you Gull. I am definitely going grociery shopping today!!! BRAT diet here I come.
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LaughingGull, yes, I just saw that article (https://www.ascopost.com/issues/december-25-2017/what-should-puma-do/). Thank you! Very nice to know that the pills are not big, certainly a better news
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Positiveinohio, now I understand your situation that you did not do chemo before surgery. Sorry for the confusion about residual tumor, that does not apply to your case.
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Another article, out of date?--- "Negligible Benefit Of Nerlynx, A New Breast Cancer Drug, Calls For Caution"(https://www.forbes.com/sites/elaineschattner/2017/11/17/negligible-benefit-of-nerlynx-a-breast-cancer-drug-highlights-need-for-caution-in-adjuvant-setting/#1a5828b94afe)
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Hi Lilych, that analysis is relevant, and it more or less says the same that other guy was saying: that it is too bad that Nerlynx did not lower recurrence rates in *all* the breast cancer types. Agree, it is too bad. And she also says that it is not clear that the lower rates of recurrence, when they happen, (for triple positive cancers) also translate in longer term survival rates. Yes, it is not clear, but from my perspective, not getting a recurrence sounds pretty good as a first step, thank you very much.
"Another disappointing aspect of the results (....) is that the main benefit (reduced invasive recurrence) occurred in women with hormone-sensitive, HER2+ cancers"
Well, since I am a hormone sensitive, HER2+ patient, it doesn´t sound so very disappointing to *me*.
The following tables show the 2-year and 5-year benefit for the triple positive subgroup of patients with residual disease i.e. no pCR
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LG, do you have the study that your table came from?
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I have the study and a poster that was presented at SABCS summarizing the study. PM me with your email address and I will send them both to you.
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I made all my information public so that it would appear but has not yet.
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Hello All,
I am on day three and am nauseous with stomach cramps. I have only had a couple bouts of diarrhea which has been bearable. The stomach cramps are awful. I am also taking Budesonide. Could this be causing the stomach cramps? Any suggestions to relieve them?
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I also had nausea the first few weeks, generally with an empty stomach, would disappear by nibbling on some crackers and it was mild. I have zero nausea now at five weeks. I also had stomach cramps now and then at the beginning. They also subsided. Did not take budesonide. I would call the doctor if they get real painful.
I think my worst days were days 3 to 10. By day 10, I was doing much better. It help not to have an empty stomach ever. Rice, oatmeal, bread, bananas, yogurt. Electrolytes drink. Lemonade with baking soda. Are you eating?
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Thanks Laughing Gull. I will try to eat more. I was eating fine until today. I am drinking alot of water but not eating as much. I will try your suggestions.
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Thanks to Laughing Gull for the copied 1 yr completed post from Zoziana! Question, where did you see the Nerlynx crosses the BBB? I haven't read that, but asked my Onc to see if he has any information. Would be so happy to know Nerlynx could prevent another Brain tumor!
Hapa, my Nurse Practitioner spoke to the Nerlynx rep and they gave me the same regiment as your pharmacist. 4 pills for 2 weeks and go up a pill every 2 weeks as tolerated.
The Nerlynx rep recommended a prescription for Budesonide, one a day to control D. Rep gave me the voucher for a 3 month supply at no cost to me. The drug is big bucks, almost 1k a month and my co pay will be $365 once 3 months are up. This is plan B if Imodium doesn't work.
I start Nerlynx Thursday and was told to start Imodium dosing on Wed. Will have Budesonide in hand in case things get ugly. Below should be 3 documents from the Nerlynx rep, hope they are legible, Dosing Options with suggested 4 tab start in writing, Diarrhea Management and Supportive Medications.
Will let you all know how it goes, saying my prayers this is bearable.
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Hi all,
Positiveinohio: how are you doing? thinking of you
rwhite: the BBB story comes from a trial in the metastatic setting (NALA I think it was called) in which adding Nerlynx reduced the rate of brain metastases.
Happy Mothers Day to those celebrating it!
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Rwhite what good resources. Nice to see it all written down. What my MO and NN gave me is not as in-depth.
And I started mine today, with a big 2 pills. Haha I am brave in many other things but a chicken in this one. Plus I have to fly back to Nashville on Friday to see my folks. Absolutely do not want any D on the plane. Just imagining it gives me the willies. Colestipol on board as well.
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LaughingGull and All, when does Nerlynx need to be started? right after one year of H (or HP) or you can wait for a while?
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My understanding is that you are supposed to start Nerlynx within a year of finishing Herceptin/ Perjeta.
The HP molecules are quite large. They stay in the bloodstream for a long time until they are finally filtered out by the spleen, whereas the Nerlynx is small thus it passes the blood/ brain barrier.0 -
Lilych,
As I understand it, the Her2-driven recurrences tend to happen within the first two years after finishing H, or H+P. Therefore, in the Extenet trial, they started Nerlynx within one year of having finished H. The benefit described in the graphs I posted above, was observed on those who started Nerlynx within one year of finishing H.
Thanks homemadesalsa for the explanation on size of molecules
LaughingGull
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LaughingGull, thanks so much!
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I am happy to report that since Friday last week I have been feeling completely normal. Not taking anti D meds and no tummy problems at all. It's the first time I feel normal since I started Nerlynx.
Lilych, you are welcome. Her2-driven recurrences tend to happen within the first couple of years, hormone-related recurrences can happen at any time. That's my understanding.
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Hi Laughing Gull,
Congratulations on feeling completely normal!!!! How long did that take? I am still struggling but am trying to get through the first 10 days and see if things improve. I am on day 7 and have lost 5 pounds. I have pounds to lose because I gained 30 pounds from the Taxol and arimidex but that is still pretty quick weight loss. There are days I feel better but really not hungry. I am having horrible acid reflux and heartburn and especially the first 2 hours after taking the Nerlynx. I still get the stomach pains some days and when I get those, I feel like I have the flu (pains, nauseous, chills, achiness and very tired. Today I was able to work all day and then do some yard work and go to the grocery store. Yesterday, I came home from work and went right to bed. I was having the stomach pains, chills, and achiness. I also felt exhausted. I am not scheduled to see the oncologist until 5/22/19 but may ask to see the nurse practitioner sooner if things don't improve. Thanks for asking! i will keep you updated.
Also, I have a question regarding recurrence. If there was no node involvement and a recurrence occurs is this usually in the breast area or another area of the body?
Have a great evening everyone!
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Hi positiveinohio,
Hope you are feeling better today. It took me ~37 days to feel normal. I gained a couple of pounds since last week.
Recurrence can happen anywhere. In the breast area, mastectomy scar, bones, distant organs....clear nodes means less chances of distant metastases though.
Have a good day everybody
LaughingGull
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I hope everyone is doing ok and that you are still feeling good Laughing Gull. Unfortunately, I was hospitalized as I had severe heartburn and reflux to the point that I could not eat anything. Even toast or a baked potato gave me heartburn and reflux. Then on Wednesday night I also experienced a severe pain in my lower left abdomen. I went to the ER and had diverticulitis and was dehydrated. I spent 36 hours in the hospital until I could eat some soft food without getting heartburn or nauseous and receive some IV fluids and antibiotics for the diverticulitis. They also said I could not take the Nerlynx while on the antibiotic. I see my oncologist next week to discuss my options. I am not sure what I am going to do. I would like to heal my digestive system over the summer and maybe start again in August and start with a lower dose and then work my way up. I really didnt have any D and would be able to handle that just fine. Could not handle the severe heartburn and inability to eat anything. Also, if I do start again, I would like a little more support from my Oncologist. I will keep you updated after my appointment next week. Have a great weekend everyone.
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On day 5 Nerlynx, Starting with 4 pills and the D hit Sunday morning, day 3. Trying to control it with Imodium, one before meals. I threw in a lomotil yesterday morning and this morning after 3 early morning D episodes. Lomotil works very quickly to stop D. I have had 10 plus BMs a day since Sunday, no fun! Still working and doing usual routine walking the dog, golf and yoga twice a week.
Budesonide is on back order till the middle of June, so Onc wrote a prescription for Colestipol granules, 1/2 a packet deluted in water 4 hrs before or 2 hours after Nerlynx. This drug isn't a quick fix, needs a few days to build up in the system. Planning to wait and start this when I go up to 5 Nerlynx
Will see Onc for liver function test next Wed and if all is well, will go up to 5 Nerlynx a day. Judging by this first week, 5 Nerlynx might be my max, I have always struggled with D and this is very watery, don't want to become dehydrated.
Only other symptom is cramping in feet, legs, back. Trying to take Magnesium with lunch and hopefully it will help without adding to the D. Mixing up the drinks with Green Tea iced tea, diluted gatorade and some cranberry juice in water to keep it interesting.
Hope all of you ladies are fairing well!
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Dear Positiveinohio, I was very sorry to read your post. Been busy and no time to post but I have been thinking of you. What an ordeal! Here is for a quick recovery, my dear. Let us know how it goes with the oncologist. Dont know if I would touch these pills again after that.
I was 100% normal but now the D is back and I went down to 75% normal. I am learning that you need to be very careful with what you eat, while on this drug. On Sunday, I went for a movie in the morning with my daughter, didnt have time for breakfast and packed 2 pounds of cherries in my bag, which I ate during the movie. Of course 2 pounds of cherries for breakfast would give anybody D including me, even without any cancer drugs. And out of the movie I bought some sliced mangos with chile in the street. Pretty stupid things to do I know. So back to rice and oatmeal and bananas and starting to feel normal.
Good luck rwhite, sounds like you have a very sound plan.
Best to all!
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Hi all- Laughing Gull I feel your pain. 2# of cherries- ouch. I just went up to 3 pills a day. Will do that for a week, then 4. Also will ask my MO if 4 sustains enough levels of nerlynx in blood to do the job. On another note, why would I think that corn on the cob would be a good idea?
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I am starting Nerlynx on SAturday and am curious to know how many of you started with fewer pills. I asked my oncologist if I could start with 4 pills and he was not agreeable to that. Said I could do 5 for three weeks and then up to 6 pills. What have most of you done? Thanks...really appreciate the help on here.
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I'm starting tomorrow with 4 pills. Bought some bananas and stocked up on toilet paper
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