Xalkori Results

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My husband has metastatic lung cancer and has been on Xalkori. The drug appears to be working (the cancer has not spread anymore). I am looking to hear stories about other people's experience using the drug.

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1

Very glad to read that it's working for him.

However, it seems you're the first person that's posted on our site about this medication.

We do have a monograph page for it here:

https:/­/­rxchat.com/­wiki/­Xalkori/­

Is he experiencing any side effects?

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2

I started on Xalkori last fall. I am feeling better than I have in 3-1/2 years. My shortness of breath has been almost entirely eliminated. I feel my energy and motivation coming back.

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3

My mother started Zalkori 6 days ago. It has really knocked her down quite a bit. Lots of stomach upset and she is very week. Just hoping that she can adjust to the meds enough to let it do its job.

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4

I had lung cancer in 2008, surgery followed by chemo/radiation. Now in 2012, it just returned. I started taking Xalkori about 3 weeks ago and feel horrible...weak, nausea, etc. I found an anti-nausea medication that has helped. But still very weak and I get winded very easily. Any insight others could share would be helpful.

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5

Hang in there. It takes a while for it to take hold. Are you taking Zofran for nausea?

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6

Thank you, yes, Zofran is the only anti-nauseau drug that my system seems to tolerate well and it is the only drug that stops the "getting sick" - so thankful for the Zofran. How long have you been on Xalkori?

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7

I started on 10/31/11. By the end of December I was a new woman. Now I feel like I used to, almost absolutely normal.

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8

So did you get really sick initially on the Xalkori? Were you still working before taking Xalkori?

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9

When I started Xalkori on October 31, I had been off any treatment for over 3 months. The cancer was starting to take hold again. I felt terrible for awhile but gradually I could feel that it was working. By the end of December I felt much better. I have had numerous respiratory infections (bad cough and awful mucous production for about 10 days each month) but that is really my only complaint right now.

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10

Hi there, just wondering how you are doing? Are you still taking Xalkori? Are you also still taking Zofran? I was thinking of trying to wean from the Zofran because I hear weakness can be a side effect.

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11

Hi, yes I'm still taking Xalkori. I had a scan 2 weeks ago and there was no evidence of disease. I am still taking Zofran, 1/2 pill twice a day when I take the Xalkori. I haven't had any weakness to speak of (just my brain--lol). The cough stopped and no more mucous. I feel almost normal, my only problem right now is water retention in my legs. I had to go to a physical therapist and get wrapped for 2 weeks to force the water out and am now wearing compression stockings at 30-40 strength compression. I also have a bit of shortness of breath on working out, riding my bicycle, walking uphill, etc. It's probably due to the trapped lung, I have a moderate pleural effusion that they can't drain. All in all I feel very blessed and fortunate to be living my life so well after 3-1/2 years of diagnosis with Stage IV.

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12

LuckyLuke, any skin rashes on xalkori? Husband has small area in his hand but no where else. Also, how long before your cough went away? Was it persistent and irritating or was it productive ?
Thanks

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13

Nicole, I had a couple of small spots appear on my skin, but they remained small and didn't spread. The cough was really unpredictable and frustrating. I did have mucous that I coughed up most of the time. We don't know if it may have been related to the edema that was pretty severe--speculation was that there was extra fluid everywhere. When someone suggested Metolazone for the edema (also continued to take 60 mg Lasix) the edema got under control and it seems that the coughing and mucous got better. On a side note, I did have progression on Xalkori after 16 months and am now on a clinical trial with LDK378.

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14

Hello, my dads has stage 4 lung cancer and is scheduled to start taking Xalkori on Monday. I am extremely worried because as of now he is on oxygen and is very weak. What should I be aware of?

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15

Hi my name is Dion, I started on Xalkori in July this year 2013, I did ok for about four weeks then my blood pressure dropped so low I had to quit. I was off of it for about a week until my blood pressure got back to normal then I went back on it , but I only took it once a day instead of twice a day like it was prescribed . I now take it every morning and every other night and that seems to be working for me.The only complaint I have is every thing I eat tastes awful . I've been very blessed I have not been sick.

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16

I have been on Xalkori for 15 months. I have gotten every side effect listed for this drug, but it have been very effective against my lung cancer and the side effects are manageable. My oncologist seems to expect that the Xalkori will become ineffective sometime. Is there anyone out there who has been on this drug for 18 months or more and still have it being effective?

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17

My husband is almost 70, stage 4 lung cancer. He ran the first treatment of chemo, due to his age it was spread out in three six hour treatments. Although he was extremely tired and felt terrible from Chemo, he never threw up or had bad diarrhea. he only ate soft foods and was very depressed. So now he is replacing his second round of chemo by starting on the Crizotinib or Xalkori in the next few days. He is very negative and I am hopeful that it will work! Any more imput would be wonderful .... so many of the posts are encouraging.

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18

sorry to hear your husband is depressed .I was to at first ,I was dx. with stage 4 lung cancer and it had spread into my lymph glands .I had some problems with the xalkori at first I however I am doing ok now with it .I will tell you this ASKING GOD FOR HELP changed every thing for me..I am doing so much better my last pet scan showed great improvement ,don't let the devil play with your mind be strong and have faith.it works.

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19

mjsdl, I was on Xalkori from October 2011 through February 2013. It worked great for me. It really knocked the cancer back. I felt very normal, though I had to work through the typical GI stuff. It did stop working and started to grow very slowly, so I went on a clinical trial for LDK378. That works even better but had worse GI side effects for me. Now they are pretty much under control and I feel better than ever. Hang in there, there are lots of treatments out there to help. Keep plugging through this with your husband and believe in yourself. You are stronger than you know.

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20

I would like to thank all of you for such wonderful and encouraging reply's. My husband has not been on the Xalkori for about three weeks and the positive change in his entire attitude and energy level is amazing. He goes in once a week for a blood draw then see's the Doc two days later. He Is doing so well the Doc said he will see him every three weeks unless something pops up in a blood test. He gets a bit light headed if he stands too fast, and said food tastes strange. But he is eating like normal now and has already gained wait back! This drug is simply amazing!!!! Again, Thank you to each and everyone who has responded to my concerns ... it is a bit overwhelming in the beginning!

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27

It has been 15 days my husband started it. Everything was going good .after 15day we did some test as per required but LFT reports comes to very high.

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26

Hi! What did you find you could eat that didn't just taste terrible?? Need help/tips! My mom can't eat anything!!!

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25

Luckyluke, Are you saying that you have been on Xalkori for almost 5 years, since10/11? That is AWESOME! Congratulations! Have you had any taste issues? I can eat almost nothing as everything tastes awful, mostly sour!

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24

Hi Steve, My mom is 87 and she started Xalkori 13 days ago. The oncologist put her on one pill a day. She had a few good days, but I can't get her to get her out of bed. She said she just can't eat. I beg her to try and get something down. She got about a quarter of a banana down today. I am so worried. She is so weak and fatigued. I am curious on how your mom is doing? She has an appt with her oncologist on Wednesday, which seems like a lifetime away...Bless you! I will pray for you and your mom

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23

My 87 year old mother is about to begin Xalkori in two weeks. She is weak and has shortness of breath but wants to live longer. I hope this doesn't make her sick.
Should we ask to begin with half a dose first off?
She is scheduled to be taking two pills each day.

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22

Just a heads up to all of you. I just had one of Xalkori's more dangerous side effects. I had a couple episodes of heart block (heart rate below 40 bpm). I had a pacemaker put in because of it. You may want to discuss this with your doctors.
I am staying on the Xalkori but went to a 20% lesser dose (and the pacemaker is in to prevent the symptom again.)

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21

I have been on Xalkori now for 28 months. It seems to have kicked the cancer (for now at least) and I am hoping to go on reduced dosage. Anybody out there who have reached this stage in their treatment. Anyone who has reduced or eliminated their use of Xalkori?

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