Neratinib trial

I have read a lot now and the benefit does not outweigh the risks involved especially as I am ER negative and had no lymph node involvement.  There is a lot of valuable information on the internet regarding the initial trial and articles in the medical journals.  I will still do some more research but probably will not go on the trial as the literature, in my particular diagnosis, suggests it is not worth it.  The 'survival increase" was only on a two year post trial as it is too recent to have a five year statistic.  Thank you all again

Hey Kath @primek No I haven't heard about this. Don't see my onc again until Oct 2018. But I'll do some reading.

Thank you all for your comments.  In my research many were stunned that the FDA in US approved the drug. In the initial trial it caused severe diarrheoa in 40  percent of the participants.  The trial I’m offered is taking it along with Imodium prophylaxis for 56 cycles. There are also all the common side effects of chemo drugs and lots of tests.  It can cause liver toxicity and heart damage.  My oncologist is running the trial and when I said I was probably going to go on it as 1-2 percent increase in non recurrence was better than nothing and I was helping cancer research he commented that he wanted people to do it for themselves.  To be selfish.  It will mean another 15 months of treatment and I’ve already had 16. anyway I have a bit of time but the major side effect is not pleasant and could impact on work.  Thank you all again 

@Nadi did you know about this? Maybe make enquiries.  As mine is Es+ al SD o I'm unlikely to qualify. 

I didn't even know there was a clinical trial for oral Her2+ cancers. Will be checking it out. Probably too late for me to join. 

I am on the Pallas trial, with Palbociclib. If the drug is related, it might have similar side effects.
I am on the second cycle of the trial and the only side effect that I can really attribute to the drug is that I have very low white blood cell count. In fact I had to have a weeks break before starting the second cycle as my Neutraphils were too low. I started Femara a week before the Palbociclib so I am not exactly sure if the other side effects I am finding challenging are due to the Femara or the drug, but I suspect it is the Femara.
I am having anxiety attacks, often followed by awful hot flushes that mean I have to sit down and stop what I am doing till they pass. I am extremely dry, and find it difficult to drink enough to stop my thirst. My knees are very tight and stiff which makes walking up stairs and hills difficult, they loosen up a bit with activity, but are limiting me a bit. I have headaches most days, fortunately that respond to Panadol most of the time, they may be related to the over heating and thirst I am experiencing too. I am also finding that I can't stand the heat, which is just great with the weather we are having here at the moment! It has always been an issue with me to a certain extent, but since starting the tablets it has increased markedly.
the Oncologist says that the side effects of Femara tend to be worst for the first two to three months, so I am hoping he is right and they settle down.
However, I am fairly certain that most of those side effects are from the Femara, not the Palbociclib. I am happy to be being monitored closely in all aspects while in the trial, and I am learning a lot from my trial nurse who is the trial coordinator for the hospital. 
I am supposedly in the high risk catagory for recurrence, though initially we worked out it was about 79% against recurrence, but who knows really.

I made the decision to go on the trial for several reasons.
I had done everything else to ensure I beat this, so I thought it sensible for me, to take any other opportunity to prevent recurrence, if it was offered. 
I liked the idea of the closer monitoring while on the trial.
My own Oncologist was to be the Oncologist during the trial.
I felt comfortable and confident with the Cancer centre at Gosford.
I can go off it at any time if I want to.

The reservations I had were mostly around the possibility of Neutropenia as I had had a lot of issues during chemo with low white cell counts, and the annoying restrictions around preventing infection that comes with it.
I will see how I go with that over the next few rounds, but if it continues, I will probably end up being taken off it anyway, as that is one of the reasons to remove me from the trial.

As this is a trial drug in my situation, I wasn't offered any % decrease in the chance of recurrence, they don't really know if it will help, but they think it will. 

Hi @awhol, I don't think I can be much help , I am on the palas trial for early  breast cancer. I am taking palbociclib along with Arimidex. My breast cancer was her negative and er positive. I don't know how similar the drugs are but so far other than increased joint pain and stiffness and some hot flushes I'm doing ok. The joint pain is from the Arimidex Not the trial drug. I'm only on cycle two so just over a month.  Hopefully someone can offer you some information. Take care
Lisa

Hi @awhol as mentioned I am on a clinical trial for a different drug. The Pallas trial follows participants to see if the drug Palbociclib is effective as a preventative of reoccurrance in early, high risk ER+ bc and whether the side effects are manageable and tollerable. I struggled with the decision as I was at the end of mastectomy, chemo, radio and looking forward to no longer being a cancer patient. The list of side effects was frightening and sounded a lot like chemo, which upset me. The deciding factors for me were threefold. Firstly, not everyone gets offered an extra line of treatment, and I didn't want to regret turning it down if 'it' comes back. Secondly, I wanted to do my part in cancer research, as my lifesaving treatments were once trial drugs also. Thirdly, I can quit any time I want, so if it's too horrible, seeyalater! I've done 3 of 24 cycles. Side effects are far fewer than I expected. The first cycle I felt fine, with a bit of fatigue kicking in during the second and the third aches, pains and tingling fingertips. The drug can cause neutropeania, which delayed my second cycle. It is likely that my dose will be reduced and some of my side effects will ease. I believe the aches and pains are most likely Tamoxifen, hormone blocker, not the trial drug. Hope this helps a bit. Good luck with your choice xxx

@awhol

 another way is to put "Neratinib" into the search box up the top of the page and read the posts that come up about it. 

@Molly001, @Unicornkisses, @LMK74, I know you're on a different medication, but maybe you could help out with how you made yiur decision, and how you're finding side effects compared to what you were warned of.