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Hi all, my mom is stage IV NSCLC and has bone mets. She's been on maintenance Alimta for 2 years with Zometa shots for the bone mets. This last chemo, her doc switched her to a new drug called Xgeva- he said it was newer than Zometa and caused less side effects (I also noticed it was much more expensive!). Anyway, after this past chemo cycle, my mom was nauseous (which she never experienced nausea before with chemo), very constipated, very slow moving, and more confused than normal. It's been like this the whole month since her chemo. Usually she has a good week and a half where she's feeling good in her cycle. Her doc says her calcium could have dropped a bit (although when her bloodwork was done, everything was normal) and caused the nausea, but he said Xgeva isn't that different than Zometa and is actually supposed to cause less side effects. I looked up Xgeva side effects today- reading all the "possible" side effects from even a bottle of Tylenol is scary and not all that helpful, so I took it with a grain of salt, but it seems that most of the adverse reactions listed are what my mom has experienced this past month. Just wondering if anyone has experience with Xgeva? Thanks!

 

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Hey! 

 

I wish I could be helpful but I've never even heard of Xgeva. But I did find this intersting article about teh cost issue: http://online.wsj.com/article/BT-CO-20110405-708707.html

 

Looks like Dr. West weighed in and called it a "modest" improvement, and docs at Vanderbilt don't seem to think it's enough of a benefit to justify the price, but if it is supposed to cause less side effects and gives your mom better quality of life, it's hard to put a price on that. 

 

But it appears to have not caused less side effects but more? Maybe give it one more try and see if it improves and then decide whether you want to stick with it or not?

 

Amy 

Hi!  I was diagnosed with Stage IV NSCLC 2 1/2 years ago.  I was on Zometa from October '08 - March '11.  My PET scan in March showed increased activity of my 4 bone mets (1 on each hip and 2 on my lower spine), so my oncologist suggested switching from Zometa to Xgeva as it was newer and the "next generation" of Zometa.  Instead of getting an IV of Zometa every 6 weeks I would get an injection of Xgeva every 4 weeks.  When I first started getting Zometa, it was every 4 weeks and after the first few doses I experienced pain in some of my joints, especially my hip (I had hip damage from a tumor).  I have only had one dose of Xgeva so far but did not experience any side-effects.  I am getting my 2nd dose this coming Tuesday.  My oncologist did say I should start taking calcium pills as the Xgeva was known to lower calcium levels (unlike the Zometa which could lower potassium levels).  All that being said, everyone does react differently to all these drugs.  I would definitely mention the side effects your mom has been experiencing to her doctor as he might be able to give her something to offset them, or he may decide to put her back on the Zometa.  Best of luck to you and your mom!

Thanks Amy and Athletic223 for your replies! I guess everyone reacts differently to drugs based on their own body. Xgeva is supposed to have less side effects, but my mom has differently had more. I guess it could be a coincidence that she's been sick this month after having her first Xgeva shot- there's no way to tell if the shot is the cause of her symptoms, but I can't think of anything else that was different. We may give it one more try, her doc just put her on calcium supplements. But when you don't know how much time you have left, to have another month where you're feeling so horrible seems like a waste of time when we know she tolerated the Zometa. Decisions, decisions- thanks everyone for your input!

 

Hello,

 I am new to this web site and am in need of questiosn /answers. My dad was diagnoised with lung/bone cancer  in May. He was given 2 dose's of chemo.... the last one being 2 weeks ago.   He did not have good results from it. Terribly ill, throwing up, not eating, pain levels through the roof. He told his Doctor that he did not want any more chemo... he knows where he is going and would prefer to have a good quality of life than deal with the side effects of chemo. So Now they are suggesting XGEVA. We don't know much about this drug and would like anyone that has taken it to please express their concerns witht he pros and cons. He was given a shot of some drug after his last chemo and was told it would cause bone pain... well it made him on the verge of suicide... Want to make sure this drug does NOT cause this reaction.

Thank you all

Lori Rat- Staten Island, NY

Hi Lori,

 My mom has been on both Xgeva and Zometa. They're both for bone mets- to strengthen bone and I believe to help prevent further bone mets. They both cause bone and joint pain, although I believe this subsides over time. It did in my mom's case. Do you know what the shot was that your Dad received after his last chemo? My mom was on Zometa for 2 years and did very well on it. There was bone and joint pain at first, but the pain subsided. They recently switched her to Xgeva because it was newer. She had horrible side effects. She had every side effect listed and it was intense. After 2 cycles/shots of Xgeva, we took her off of it and put her back on Zometa. It just didn't sit well with her. I believe the research coming out on Xgeva vs. Zometa is that it offered slightly longer survival time (like 1 month), and is easier on the kidneys, BUT you can have more flu-like symptoms. So, pick your poison, so to speak. In my mom's case it just didn't suit her so we went back to Zometa, but everyone reacts differently to different drugs. I hope this helps you-

Hi,

I am not sure of the name of the after chemo drug but will find out tomorrow.

The problem is that he is in so much bone pain right now we don't want to make it any worse.

With all these drugs, come side effects and everyone reacts differently to them.  So, heck if they told us no bone pain side effect I would go for it right now. Not sure if we, he or I, want to find out the hard way.

I was told it was terminal in May and he has 6 months to live.....Why whould he be put through any more torture??  I gues I am answering my own questions here... Don't want it. Quality of life now is ok.....with this drug no one can truly asnwer that question.

Very sad time... for all of us here on this site.

Sincerely, Lori

Hey Lori,

Bone mets tend to be extremely painful. My mom's were. Have your Dad's doctors talked about radiation to the bone mets? That absolutely cured my mom's bone pain. Radiation is quick and painless, so I don't see a downside to your Dad trying it. I would really ask his docs about this. Last June my mom was given 6 months to live- so don't put too much into what the docs say! You never know. Definitely ask about the radiation, even if your Dad did only have 6 months, the radiation could improve his quality of life so much. Hope that helps-

Radiation was never an option nor dicussed with us. He has a pacemaker/defrib and I think that is the reason. BUT, will def ask his doctor. If it can relieve the bone pain , I'm in !!!   I cannot believe all the replies here.You guys are so helpful and I am so grateful to you all.

Sincerely

Lori

Lori,

Radiation for bone mets is considered "pallative radiation" which means "comfort measure radiation". It is different than "curative radiation". When someone gets radiation to try to get rid of a tumor somewhere that is different than what they are doing for your dad. That is curatiave.

With bone metastisis, radiation is used for pain control and it is usually very effective without major side effects. By radiating the area of pain in the bone, the pain usually begins to ease rather quickly. Pain medications ease the pain, but radiation can get rid of it. Pain also makes it so people don't want to eat, as well as the pain medications are very constipating which also takes away the appetitie.

I always encourage patients to go for radiation for bone pain. It is different than when areas such as the neck or breast bone, or breast for example are radiated. Remember, it's a lower dose and is being used for comfort measures not cure.

Hope this helps.

Tammy

The drug I'm sure your father received was for his bone marrow to produce more white blood cells. If it was just a one time shot it was probably Neulasta and given the day after his last day of chemotherapy. If it was a series of 3-5 days of one shot a day it was Neupogen which does the same thing but is just given in a series rather that a one time shot.

These two medications are called "growth factors" and as I said they are to help the body manufacture white blood cells (our cells that fight infections) at a higher than normal rate. Bone marrow lies deep in our large bones, especially our pelvic bone and long leg bones. When the bone marrow is stimulated to work over time with these drugs it can cause deep bone pain that can range from hardly any pain to excruciating pain. It sounds like your dad, unfortunately, got the latter. I usually tell patients with lung cancer (not with some other cancers that tend to run low platelet counts all the time) that the night before they shot to take 4 Advil and then do the same the morning of the shot and again that evening. Then take 2-3 Advil every 6-8 hours for the next 4 days as needed for the bone pain. Normally when people are on chemo we don't advise to take Asprin or Advil products, but for the first few days after that shot we let them.

This is different from the Xgeva shot that they are talking about. It will not cause pain like that. It doesn't cause pain at all, so if that's the route he goes, he should tolerate it fine.

Tammy

Yes it was a one time shot given 24 hours after the dose of chemo.

So you have taken XGEVA???  No bone pain side effects???

 

Lori

We have switched many of our patients from Zometa to Xgeva. Zometa can be hard on the kidney's because it is excreted by the kidneys. Prior to each dose of Zometa  the patient needs to have his/her calcium level checked.  In addition they also have to have their serum creatinine checked which is an indicator of kidney function that show in a blood test. Any one who has any type of kidney problems to begin with usually cannot take Zometa or at least they are not able to take it for a long period of time.

Xgeva is not excreted by the kidneys, therefore it is much better tolerated. The only labs that need to be checked prior to the injection is the calcium.

Both Zometa and Xgeva can decrease the calcium levels. With Xgeva people should be on both Calcium supplements and Vitamin D.

Many patients like the Xgeva also because it is just a "walk in, get the shot, walk out", where Zometa is normally a 30 minute infusion followed by some IV fluids (because of the kidney risks).

Xgeva is more expensive, but our patients with private insurance have had no problems with coverage. People who just have Medicare alone may have problems because it is more expensive (as most new medication are) and with the drug being given once a month, the %20 that Medicare requires the patient to pay adds up very quickly. Most of our Medicare only patients we have kept on Zometa.

We have had several patients on Xgeva since it first came out and so far have not see any side effects, though I'm not saying your father isn't having them. But Xgeva is thought to be a better tolerated drug in the studies that have been done. You may want to try it one more time and if the symptoms continue than maybe it is the Xgeva.

Tammy

 

 

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