Does anyone have experience using entrectinib?

@ceciliel, I believe that @lycisca has experience with entrectinib (Rozlytrek), albeit for stage 4 lung cancer.

Cecilie, did your husband decide to try chemo or entrectinib? How is he doing?

@colleenyoung

Yes, I have six years' experience with entrectinib. I'd be happy to answer questions anyone might have about this drug and it's side effects.

Thank you so much for your answer Colleen and Lycisca!
My husband was advised to drop the chemotherapy and go straight to Entrectinib. He actually started the treatment yesterday. We read a lot about the side effects and they seem pretty bad. That made it a hard decision, since the doctors thought that the chemotherapy would be ok.
But now there is no turning back, and Entrectinib seems like the safest option to avoid a relapse of the cancer tumour.
What is your experience after six years Lycisca? Have you used it constantly, or have you been on and off? What side effects have you experienced? Is it worse in the beginning?
Thank you so much for reaching out, I really appreciate it!
Best regards Cecilie

@colleenyoung
Thank you for your help!
My husband is doing pretty well. Still recovering from the operation and the radiation. We are very anxious to see what side effects he will get from the Entrectinib..
Best wishes Cecilie

@ceciliel. thank you for posting. my name is Burt and I have posted here before. You mentioned a drug that is an alternative to chemotherapy. In previous post, I mentioned that our son is a grade 4 glioblastoma. He has finished radiation and is currently on a rest from his chemotherapy. We will get MRI results on October 12 and the doctors will decide what to do from there. I don’t know if that drug is right for him or not, but I want to learn more about it and we’ll look it up. Also grateful for anything you can share. I empathize with what you are going through. It is very hard that this is our married son. I can’t imagine what it would be like if this was my spouse.

@ceciliel
Hi Cecilie,
To answer your questions, yes, I have used the Entrectinib constantly for over six years with one or two annual "vacations" of about 3 weeks each. The vacations allow me to temporarily get over some of the side effects, which return as soon as I begin taking it again but sometimes not as bad.
Like your husband, I never received any chemo except the Entrectinib. My understanding is that it's a type of targeted oral chemo that will attack the cancer anywhere in the body it appears.
Yes, I remember some of the side effects being worse at the beginning. The weakness and fatigue really hit me hard. My initial experience was probably different than your husband's, since I'd just spent a month in the hospital for pneumonia, which was caused by the cancer in my lungs. I should add that when I first started the drug, I was so knocked down that my oncologist decided that I should take a smaller dose. Therefore, I take 600 mg (two pills) a day, not three.
My side effects are weakness, fatigue, diarrhea (and sometimes constipation), light sensitivity, mood swings, coughing, some numbness in my hands that goes away after I use them for a little time, and some loss of appetite. Fortunately, most foods taste "right" while I'm eating them, but I often have a bad taste in my mouth after and before eating. At the suggestion of my cancer center I've tried different things for that, but the best solution is eating a small piece of hard candy.
I generally follow the diet recommended for cancer patients and have been able to modify most of my favorite recipes to fit it.
I hope that the Entrectinib will work out for your husband.
I'll be happy to answer any further questions if I can
Lycisca

My sibling has Stage 4 glioblastoma methylated wild type…has this been available for very long? Improvements aside from side effects?

@lycisca Thank you so much for your answer. It’s really helpful to hear your story! It’s great that you’ve been able to use the Entrectinib for so many years. And that it’s keeping the cancer from growing.
My husband has now been on Entrectinib for two weeks. And the side effects are starting to kick in unfortunately. He’s right side is getting really weak, he has problems with his balance, the food tastes different and he’s also been having stomach problems.
He is trying to stay active and to get out of the house as much as he can. And we hope that he might get a bit better when his body gets used to the medication.
You guys are fighters, and should be really proud of yourself!!
Thanks again and take care.
Best wishes Cecilie

@ceciliel I'm sorry the side effects are starting to kick in. If your husband gets too uncomfortable with them, it's important to let the doctor know. I wish him the best of luck with the Entrectinib.
Lycisca

@judyandchloe this is a medication for special mutations. My husband was “lucky” to have a brain tumor grade 3 with a NTRK2 fusion. That means that Entrectinib hopefully can help “stop” the growth of the cancer cells. It was recommended instead of regular chemotherapy. It’s more targeted to my husband’s kind of tumor and can pass the blood/brain barrier.
I don’t think they use it for glioblastoma unfortunately.
Best regards Cecilie