Xalkori Forums

I have been on xalkori for about a year now; diagnosed with stage IV lung cancer that mets to the pancreas. Lately, I have been waking up in the middle of the night with really bad acid reflux... wondering if anyone else taking Xalkori has experienced this. ## I have been on Xalkori for 8 months and i have sometimes experienced acid reflux as well, my doctor said he wasn't sure Xalkori could be blamed for that. I have noticed that the reflux mainly happens when I have a heavy meal for dinner. So what i do now is that i drink a glass of water with a little baking soda before going to bed and it seems to work well against the acidity in the stomach. Moreover, I put an extra pillow under my head and it's much better like this. I think that a light dinner can partly solve the proble...

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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. ## 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: Is he experiencing any side effects? ## 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. ## 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 ...

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I have been taking this drug for 5 weeks and am having almost no side effects except odema--swelling of the legs and hands-anyone else have this--bowels appetite all good and sleeping well Thanks Roger ## Hi Roger I've been taking Xalkori for 11 months and the last seven or eight months have seen an huge increase in oedema of hands / arms and ankles / feet. We're trying various options, decreasing the dose, taking diuretics which has some effect but not if you're hot / flying / walking a lot. I'm guessing we're stuck with it - goodbye to posh shoes and gloves... I've found side effects to come and go. Nausea and bowel issues are my constants although I'm used to it now, and stripy vision at night. But the oedema is by far the most debilitating. ## Hello again...

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My mom has only been on Xalkori for a few weeks and since switching to it everything she eats has a sweet flavor and turns to a disgusting oily crisco mush. She's struggling to eat or keep anything down. Has anyone else had this experience? What are you eating that is working for you? ## Hello, Rebecca! How is your mom doing? Has there been any change? According to the FDA, it can cause a change in taste as a side effect, along with nausea, dizziness, headache, and decreased appetite. However, if it is affecting her so severely that she can barely eat, she should consult her doctor. It is also very important that she take in proper nutrition.

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I started taking Xalkori about 9 weeks ago for stage IV ROS1 lung caner. My cough disappeared after the first pill so I feel very fortunate that I'm responding so well to it. I'm slowly getting back my energy and am able to breath easily now. However, I have edema in my ankles and feet and my digestive tract has been hard to regulate. I want to stay active but my feet and ankles swell so much I can't be on them all day. Has anyone found a holistic or natural approach to these side effects that works and is safe to take with the pills? ## There's no way to know what natural remedies may be safe to take given your medical condition and the medication you're taking. Thus, it would really be best to consult your doctor to see what may help with the edema. It is a common ...

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What's the longest people have lived for on Xalcori? I have a small lung cancer that spread to my spine. ## Hi I've been on the drug 5 months my recent scans showed it is working hopefully for many years please God best of luck for the future. ## A friend has been on the drug for a year and it is working very well for him, thank God. I believe it will work very well for you too!!

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My mom was diagnosed with stage IV NSCLC with only BM two weeks ago. The day before she was to get her port for Carbo/Taxol (which Medicare had pre-approved), the called and said her ALK came back positive so new plan is Xalkori. She went to get the med and the price is astronomical. She is on Medicare and there is absolutely no way that she can afford the drug, and no way even spread between the three kids we can make it work. Has anyone obtained the drug in Canada or Mexico? We're willing to do anything legal to get this for her. She got a grant that will cover two month of it, but after that we just don't know what to do. ## Is your mom low income? If she is, she might qualify for help paying her Medicare co/pay and other Medicare expenses. I have put a link below. She can al...

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Bonjour à tous je suis une jeune réunionnaise de 28 ans (i'm a woman aged 28 leav in Reunion Island)et je suis atteinte de cancer aux poumons depuis 3 ans. Je prends XALKORI depuis août 2013, (i take Xalkori since august 2013) jmon cancer a débuté peu après on accouchement (my son's birth) j'aimerai savoir quelle est l'efficacité en terme de temps de ce traitement, puis-je encore espérer le prendre longtemps? (How long do you take it, for how years is it works?) j'aimerai avoir des gens à qui parler car ceux qui sont autour de moi me soutiennent mais c'est réconfortant de parler aux gens de la même situation (i would talk about this with people who have this cancer and difficulties) Thanks a lot for your answ...

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Hello, I am new to this forum and pleased to meet you all. My partner, a 27-year old man is being treated with Crizotinib since September 2012. He was diagnosed with Non-Hodgkin Anaplastic T cells Lymphoma ALK+. After chemo we decided to continue his treatment with Crizotinib (on a clinical trial) rather than following the standard path of autologous stem cell transplant. He has never suspended the treatment apart from short periods (10 days) when his blood work showed he needed to (low white cells). He has been on complete remission since (he actually had a negative CT scan also before starting but his PCR/NPM-ALK from peripheral blood was positive suggesting the illness was still present in the blood and a high chance of relapse). Being a fairly young couple we have been wondering abo...

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Hello my name is Erica & I was diagnosed with papillary thyroid cancer in 2005 at the age of 15. At the time I was diagnosed it had already spread to my lungs. I've undergone several surgeries & have received SEVEN, yes 7 round of radioactive iodine. My type of cancer is supposed to be highly responsive to this type of treatment but after almost 8 years I still have the cancer. Lately I've been feeling weaker, I do take daily medication but haven't been insured or affort seeing my oncologist because my childrens cancer insurance expired when I turned 21. Im just trying to look for answers, and have something to present to a doctor whenI finally do see one again. ## You can learn more about it here: Otherwise, I'm afraid I can't help much, since I am not very ...

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Hello, A close family member has been diagnosed with neuroblastoma and is getting Xalkori with good results. However, for a reason unknown to me, she can only get 45 days of the drug.. Can Xalkori be purchased directly from Pfizer? Are there pharmacies that would accept out of the country prescriptions? ## Hello, Gilbert! How are you? I'm sorry about her diagnosis. It really depends why she can only get 45 days of it. Is it an insurance issue, or is that all her doctor will prescribe? If it's an insurance issue, she could get more, as long as her doctor prescribes it, but will have to pay for it herself. The FDA lists the typical side effects of this medication as possibly including headache, nausea, slow heart rate and easy bruising. However no, you cannot obtain it without a p...

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My 81 year old dad started Xalkori almost a month ago for stage IV lung cancer that has spread to his liver. The most worrisome side effects initially were a bad interaction with his irregular heartbeat medication, which has since been discontinued for now. He is no longer faint but has aversions to practically all food. Any suggestions for how to help him with this? ## Hello, Rachel! How are you? What problem does he have with food exactly? Is it that he says it's unappetizing, does it make him nauseous? Has he consulted his doctor about the issue? Sometimes cancer patients require a pretty bland diet, to try to keep them from getting sick, so he may not be able to eat the stuff he normally would have, before he began treatment.

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My brother in law was just diagnosed with stage IV lung cancer. It has metastasized to his brain, liver, and bones. He started xalkori a week ago and is having terrible diarrhea. He is still in the hospital and has now been told he has C Diff. He is losing weight, is weak and is always cold. Our family is concerned this is the medication, but it seems to be the C Diff. Has anyone experienced side effects that are so severe just from Xalkori alone? What else should we be looking out for? ## Hello, TJ! How is he doing? This medication does commonly cause diarrhea as a side effect, but not usually that severe. It's actually not considered a worrisome side effect. What are they doing to treat it? ## Hi Verwon. His C Diff has subsided because of the strong antibiotics. He was released ab...

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My husband was diagnosed 19 months ago with stage IV metastatic to the brain lung cancer. After tumor removal from brain and traditional chemo and radiatiation to the brain , he started on Xalkori 11 months ago. Initially his tumors shrunk in half and his scan showed today that the tumors are still stable. Our insurance has changed and now our copayment is 5x what it used to be. Has anyone gone to Mexico or Canada to get this job. His blood thinner med has increased by 15x. We are so thankful for his progress but not sure we can continue to afford the treatment due to the cost. Thank you for any info .... Im also on Embrel which has increased 5x also. ## The best suggestion I can make is to contact the social work department at your local hospital. There are many trusts and foundations ...

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I have been taking Xalkori since the end of May 2012. In the first 30 days, I had trouble keeping food down, lost 20 lbs and felt VERY sick. Praise God, I am on Zofran for the nausea and am keeping food down. I have started to feel better, much better than a few weeks ago.... But still get fatigued easy and overall feel weak. I am 50 years old. Wondering if anyone else has experienced this and if it gets better. ## I don't have personal experience, but I can tell you that those are normal side effects with most of these types of medications. Learn more Xalkori details here. And unfortunately, many such side effects do last the entire course of treatment with it, so you might just have to slow down a bit for awhile. Does anyone have experience with this medication? ## I have been on ...

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My daughter is 27 yrs old, she was diagnosed with Nueroblastoma, she had Chemotherapy treatment and then a surgery and and currently taking Radiant MIBG. that hepls her for a better daily life for 5 months then the tumor mass grows larger causing sever pains and endangouring other organs. I have just heard about Xaltori, any Nueroblastoma adult had tried it.. thanks

I have been taking Xalkori since the end of May 2012. In the first 30 days, I had trouble keeping food down, lost 20 lbs and felt VERY sick. Praise God, I am on Zofran for the nausea and am keeping food down. I have started to feel better, much better than a few weeks ago.... But still get fatigued easy and overall feel weak. I am 50 years old. Wondering if anyone else has experienced this and if it gets better? ## Hi Karen, After doing some research on Zofran (Ondansetron), I found that this medication does list weakness, tiredness, and shortness of breath, as common side effects. This could explain the overall weak feeling that you may be experiencing. You can view a list of side effects by following the link below: ncbi.nlm.nih.gov/pubmedhealth/PMH0000157/#a601209-sideEffects I hope ...

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