Nerlynx

Hi @Shell72

i finished herceptin last September, I wanted to try Nerlynx, however the oncologist advised against it due to the possibility of excessive diarrhoea and poor quality of life.  

Pascoe said:

I am Her2+ and E+. I have just finished 12 months of chemo, radiation, last Hercepton on Thursday and ongoing Letrozol. Adding Nerlynx to the list of treatments has been an option for me however my oncologist has just let me know that it now no longer available for free on compassionate grounds by the company. It is being subsidized I believe but I would still have to pay $18000 for the year of tablets if I am eligible. The side effects sound awful :( I would love any feedback from anyone who has been on Nerlynx as to the side effects and thoughts on this. 

Hi, I went on Nerlynx over 12 months ago when it was free and it is awful. Major "Major" diarrhoea feeling tired all the time - because you have nothing left in you, couldn't eat much lost a lot of weight - I had to stop as my cancer came back. I will not be going back on it after my next lot of treatment is finished, I will be asking for something else if there is anything. Hope this helps as it effects everyone differently but diarrhoea is the main side effect. Good Luck! 

Hi @PV123, 
Sorry, have just checked in after about 1 month. I have had my ups and downs with Nerlynx. I started on 3 for one week, increased to 4 for one week and have been on 6 for two weeks now. I am very quickly learning what I can and cant eat. I had very bad brain fog and dizziness but that has disappeared. I also have had to take anti nausea a few times. The general feeling crappy has been the worst. I have managed the D really well, taking 2 Gastrostop in the morning and 1 at night. I have also taken the odd extra one at night time if I have needed it which has been about 4 times so far.  I have now cut out the night one altogether as I feel I  don't need it but wont hesitate to take it if I need to.  However, I think I have turned the corner. For the last couple of days I am feeling better. Certainly not feeling on top of the world but it is doable and I think for me the benefits of taking it outweigh the side effects. I have found the pharmaceutical company who send me the nerlynx wonderful. I can ring them anytime and they check in every week.
The pharmacist have recommended the probiotic Life-space Triple Strength which I take every day. My doctor has also advised me to take Caltrate for my bones and 1000mg of Vit C and mega zinc 40mg for my immune system as I ended up with a boil, cold sores and a rash. I had to have a dose of antibiotics for the boil but all good now, everything has healed and feeling so much better. Hope this helps. XX  :)  
 

Good luck @Pascoe

Hi @Pascoe
Great news that you are soon to start Nerlynx.  I think one can start these within a year of completing herceptin.  I might speak to the Onco again.  How often do you need to see the Onco while on these tablets.  Are you allowed to take any probiotics while on Nerlynx.

Hi @PV123
My oncologist also told me he had a few patients most of the way through their year of Nerlynx and doing well. They started with on 4 tablets and worked their way up to 6...they also had the anti-gastro tabs. He mentioned one had a few issues but they soon resolved so that was a promising discussion. My tablets are in the mail so will let you know how I go. I think I am more nervous about this treatment than any of the others :)
. 

Hi @Pascoe
I saw my surgeon yesterday and she mentioned that two of her patients successfully completed one year of Nerlynx. When are you starting, please keep us updated.  Knowing that some people can manage the side effects makes me think I might give it a go as well.  The cost is certainly an issue.  Good luck with your treatment.

It's definitely worth a try @Pascoe, you may be one of the lucky ones who can tolerate it. Good luck with it and make sure you keep those gastro stop tabs handy 😉...for me though it was the nauseated feeling, low appetite and sore tum that were the worst to deal with...
Take care

Hi @PV123, my reocurrance started in my lymph nodes under my left arm ( had full mastectomy and aux clearance on left side ) it was also in my C7 vertebrae. I'm going along really well now, have had a rough few months with none of the treatments working for too long and the disease spreading to my liver and lungs but I'm now on a new oral treatment just on the pbs, verzenio, and it thankfully is slowing things and I feel really well ,almost normal again. We are so very lucky to have access to so many treatment options...hopefully this one will continue working for a long time to come...I hope that you continue to recover and keep well, my Onc told me right from the start that I was in the high risk basket..thankfully my diagnosis is in the minority now