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Does anyone have experience using entrectinib?
Brain Tumor | Last Active: 2 days ago | Replies (11)Comment receiving replies
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
Replies to "Thank you so much for your answer Colleen and Lycisca! My husband was advised to drop..."
@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
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@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.