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Anybody in our little group here on Crizotinib (Xalkori) now?

Ex_Rock_n_Roller's picture
Ex_Rock_n_Roller
Posts: 267
Joined: Mar 2011

My first shipment is coming in next Tuesday, and I'm interested in anybody's experiences.

I'm talking more along the lines of how well you're tolerating it than about effectiveness. I'm going to maintain a positive outlook on that as I did with the first-line chemo and rads, but would be interested in knowing whether this drug really beat up on you, was a day at the beach, or anything in between.

It turns out I'm the first person my onco, in our fairly decent-sized hospital in our fairly decent-sized metro area, has had on this drug. Point man ... yessss! I had to go for it on that basis alone.

I do think I'm going to push Day One back to after the Thanksgiving dinner, though.

z's picture
z
Posts: 1251
Joined: May 2009

I visit the Inspire web site for lung cancer. There are all kinds of chemos being used. I have no info on chemo for lung, but I had it for anal cancer, but not what you'll be having. I hope you will post over there as well, lot of good information. Lori

Ex_Rock_n_Roller's picture
Ex_Rock_n_Roller
Posts: 267
Joined: Mar 2011

I found some usable advice on Inspire and on Grace.

ColoradoDani's picture
ColoradoDani
Posts: 65
Joined: Sep 2011

I know from watching Craig how hard it is to take meds when you feel so great. He really struggled with this, and honestly, it didn't go well at first. He actually said he wasn't going to do anything and just accept his fate at first. I freaked out, and that paid off and he started Tarceva. He did have serious side effects from the Tarceva, but they were under control within about 6 weeks, and then he went on his Superman routine all summer with athletic endeavors. Be patient if it's not fun at first. Glad you found some info on Grace and Inspire. Craig's oncologist from University of Colorado Hospital was actually one of the guys who developed your drug (not that that helps you, but it's interesting to us). We're thinking of you and rooting for you.

erinryan88's picture
erinryan88
Posts: 2
Joined: Dec 2012

I just came across this discussion board looking for information from people who were taking Xalkori. I was diagnosed with stage 4 lung cancer in April of this year. I am a 45 yea-old single mother of two who is a life long non-smoker and athlete. This diagnosis as a complete shock.

My biopsy results came back ALK positive and my oncologist was very glad. I was now one of the few first line treatment patients for Xalkori. I started taking the medication in June of this year. Over seven months later and I am feeling really good. Taking the medication is very hard. When I started taking it, I had plenty of side effects.

It seemed hard on my stomach and would quickly make me feel sick. Everyone kept saying your body needs 4-6 weeks to adjust. I was just miserable. BUT what is worse? I had to do it for my kids and family. I was depressed and wondered if it really was working. I needed to eat to feel better and drink plenty of liquids. That was hard because my taste buds changed and nothing was tasting good. I would love to hear how you are doing? I can say it was all worth it. My tumor and mets shrank progressively.

After 3 months I really started to feel like I could get back into the world. An eternity at the time. Everyone kept telling me I needed to this and that and get out and be like old, even when i was dehydrated family thought I had a flu and told me to wait it out - well that landed me in emergency. All said, how you feel and at what pace is all within you. No one else really knows. It isn't easy. Taking that pill 2x every day not fun, but it is my mini miracle right now.

Today I feel great. I had brain radiation so my hair is finally growing, but I feel better then I have in a while. My onncologist said only one other patient in the system is on Xalkori for first line. I feel truly blessed. I pray it will continue to have remmarkable results. In the words of my oncologists "the results are beyond good, they are great". I have to hold oonto that and take those big brownish pills morning and night.

Ex_Rock_n_Roller's picture
Ex_Rock_n_Roller
Posts: 267
Joined: Mar 2011

... and so far, I am totally thrilled with Xalkori.

I haven't had a single difficult stomach problem with it. I got out ahead of that by raising the head of my bed 2", taking omeprazole every day before starting, and taking Xal. with food (a little bit of food before, then pill, then a little food after). Also, I never go to bed within two hours of taking it. The only time I felt the slightest bit whoopsie was one day when I decided to take my first bike ride after a month layoff, 1.5 hours after taking Xalkori. Bad idea. I had to bail out and lie on the ground for about 10 minutes to prevent disaster. No, folks, don't call 911.

If my sense of taste has changed any, I can't notice it.

I had a couple instances of borderline diarrhea (increased urgency but not frequency, luckily) the first couple days, but it looks like 1/2 an Immodium every other day has totally fixed that, and I may even be able to go off that small amount. Ever since I found out that would work, I've been eating pretty much anything I want.

The only noticeable effect I've had is the predictable flashing visual field immediately on going from a dark space into light, and that disappears after about one minute. Pffttt ... who cares?

My first lab came back with a couple liver markers slightly raised, but a followup a week later showed them OK, so I was able to refill for month #2 with no change in prescription (500 mg/dy).

My blood pressure has dropped measurably, but I was medicating slightly for it being a little high before, so ... dropping the BP meds = all good.

In truth, 90% of the time I can't really tell I'm on anything at all. I just have to stick to the routine, and hopefully it will continue to be this tolerable. Based on my experience to date, I'd recommend it to anybody who was eligible.

The big unknown at this point is whether it's working. I'll get a reading on that the second week in January.

Best wishes for continued good results to you, Erin.

FYI: My first line was 38 days of concurrent radiation and Cisplatin+Etoposide, ended about August 1, 2010. Also a never-smoker and borderline fitness nut (swimming and biking).

erinryan88's picture
erinryan88
Posts: 2
Joined: Dec 2012

Thanks for your experience.

I wish I had known some of this when I started. Especially the 2 hours before bed. With my kids and all I find it hard not to take right before bed. I would sometimes feel like it was stuck.... in thethroat. LOL not a good feeling and have since not had that.

I always feel like I was diagnosed and then left at the curb with these small details on everything. The half an immodium every other day would have been nice to know. Please keep me updated on your progress with medication. So far you are the only one I know of. I hope it is as effective for you and I pray about its continued effectiveness.

Happy Holidays

ToBeGolden's picture
ToBeGolden
Posts: 697
Joined: Aug 2010

I've only had chemo-lite for laryngeal cancer. But that cancer has matastesized to the lungs. So chemo-heavy may be in my future. All these stories of my peers getting thru chemo-heavy is encouraging. Thank you for posting them. Rick.

Ex_Rock_n_Roller's picture
Ex_Rock_n_Roller
Posts: 267
Joined: Mar 2011

I just got the verbal on scan #1 since Xalkori, at 46 days. 50% shrinkage on the new nodule of concern. This is some bodacious stuff! We'll have to see if my liver tolerates it long term; it continues to be slightly unhappy, although not enough for a dose adjust ment yet.

dennycee
Posts: 647
Joined: Mar 2011

In the true sense of the word.  I am in awe that you have had such positive results inside that short a time period.  May you continue and that liver of yours continues to tolerate it.  

z's picture
z
Posts: 1251
Joined: May 2009

I am so happy its doing such a great job.  I hope your liver just deals with it as long as it needs to.  The liver is amazing, and if you had to stop it could repair itself. I wish you continued good news. lori

kado4
Posts: 80
Joined: Jul 2011

I was wondering how you were doing,Ex rock-n roller.Im glad you are respondng to the Xalkori.This sounds like very promising treatment!I wish you continued success with this treament.

kado4
Posts: 80
Joined: Jul 2011

I was wondering how you were doing,Ex rock-n roller.Im glad you are respondng to the Xalkori.This sounds like very promising treatment!I wish you continued success with this treament.

Ex_Rock_n_Roller's picture
Ex_Rock_n_Roller
Posts: 267
Joined: Mar 2011

I just got to see the scan today. Pretty graphic. To use fruit metaphor, maybe apricot went to dried apricot, or grape to raisin. This is a way bigger change than they saw over the same time period when I was under radio and chemo. Liver markers looked good enough, too.

There's no representation that anything is actually getting killed, but hopefully we can keep pulling the wool over the eyes of the cancer and picking its pocket for some time to come.

Next scan scheduled for April. I'm going to hit the hiking trail! Hope you-all and your nearest and dearest are doing as well as possible,.

Steve

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