› Forums › General Melanoma Community › Joint Pain on Zelboraf
- This topic has 27 replies, 7 voices, and was last updated 10 years, 11 months ago by
frosbac.
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- April 27, 2012 at 5:51 pm
My son has been on Zelboraf for about a month and has been doing great. However, he has recently experienced some severe joint pain. He's pretty sore and has been having a hard time walking and moving around. Has anyone on Zelboraf experienced anything similar? He does say once he's up and moving, it seems to lessen a little – but he's still pretty sore and achy. Will this side effect fade anytime soon?
My son has been on Zelboraf for about a month and has been doing great. However, he has recently experienced some severe joint pain. He's pretty sore and has been having a hard time walking and moving around. Has anyone on Zelboraf experienced anything similar? He does say once he's up and moving, it seems to lessen a little – but he's still pretty sore and achy. Will this side effect fade anytime soon? I thought I read somewhere (on this board, maybe??) that this particular side effect tends to go away after you've been on the medicine for awhile. Is that right? Any advice on over the counter medicine or old-fashioned remedies would be appreciated (he won't take anything that is filtered through the liver). Thanks in advance…
On another note, I am just so sad about Boots – breaks my heart. She was so helpful and such a fighter. I HATE HATE HATE this disease.
Bridgette (Jeff's Mom)
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- April 27, 2012 at 6:04 pm
Hi Bridgette,
I have no input about Zelboraf but I agree with you about Boots. I know that she told you about the airfare service for cancer patients. She was a gving person and will be missed.
I live in Las Vegas and have to commute to LA to Dr. Ribas at UCLA. I want to wish your son luck on his consult with Dr. Ribas & Hamid.
Will you son's flight to LA be able to get subsidiazed by any cancer service or will he be getting free air service. I have been looking to get sone help with my flights but cannot find anyone to help.
Best Wishes
Marie
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- April 27, 2012 at 6:04 pm
Hi Bridgette,
I have no input about Zelboraf but I agree with you about Boots. I know that she told you about the airfare service for cancer patients. She was a gving person and will be missed.
I live in Las Vegas and have to commute to LA to Dr. Ribas at UCLA. I want to wish your son luck on his consult with Dr. Ribas & Hamid.
Will you son's flight to LA be able to get subsidiazed by any cancer service or will he be getting free air service. I have been looking to get sone help with my flights but cannot find anyone to help.
Best Wishes
Marie
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- April 27, 2012 at 9:33 pm
Hi Marie,
Call Amanda Ranieri at PALS Services. She really was wonderful. You have to show need and that you cannot afford to fly commercially. There are a bunch of forms to fill out and your doctor has to sign a release form. Here's the information:
Amanda Ranieri at PALS Services – Patient Airlift Services
Her direct phone # 516.300.1660 ext. 104
Again, if it wasn't for Boots, we never would have known who to call to get that flight down to see Dr. Weber. I am surprised and so saddened by the news of her passing.
Thanks for the support – hoping Dr. Hamid or Dr. Ribas can give us some more options for Plan B if Zelboraf fails. We have Dr. Weber's recommendations (he will help us) and want to know if the other 2 concur with Dr. W's point of view.
Take care and God Bless!
Bridgette (Jeff's MOM)
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- April 27, 2012 at 9:33 pm
Hi Marie,
Call Amanda Ranieri at PALS Services. She really was wonderful. You have to show need and that you cannot afford to fly commercially. There are a bunch of forms to fill out and your doctor has to sign a release form. Here's the information:
Amanda Ranieri at PALS Services – Patient Airlift Services
Her direct phone # 516.300.1660 ext. 104
Again, if it wasn't for Boots, we never would have known who to call to get that flight down to see Dr. Weber. I am surprised and so saddened by the news of her passing.
Thanks for the support – hoping Dr. Hamid or Dr. Ribas can give us some more options for Plan B if Zelboraf fails. We have Dr. Weber's recommendations (he will help us) and want to know if the other 2 concur with Dr. W's point of view.
Take care and God Bless!
Bridgette (Jeff's MOM)
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- April 27, 2012 at 11:09 pm
Hi Bridgette,
Thank you for the info re: PALS. They told me that West Coast is NOT covered by PALS.
Is your son using another cancer air service to fly to CA??? If so, I would sincerely appreciate the info.
I am so happy to hear that Dr. W. will help you…what is his recommendation???
Thank you for help & replying to my post.
Marie
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- April 27, 2012 at 11:09 pm
Hi Bridgette,
Thank you for the info re: PALS. They told me that West Coast is NOT covered by PALS.
Is your son using another cancer air service to fly to CA??? If so, I would sincerely appreciate the info.
I am so happy to hear that Dr. W. will help you…what is his recommendation???
Thank you for help & replying to my post.
Marie
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- April 27, 2012 at 11:09 pm
Hi Bridgette,
Thank you for the info re: PALS. They told me that West Coast is NOT covered by PALS.
Is your son using another cancer air service to fly to CA??? If so, I would sincerely appreciate the info.
I am so happy to hear that Dr. W. will help you…what is his recommendation???
Thank you for help & replying to my post.
Marie
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- April 28, 2012 at 12:22 am
Hi Marie,
PALS sent vouchers from Southwest. I guess Southwest doesn't fly to LA??
We haven't secured flights to LA yet – we may end up paying for this out of pocket. Jeff is heading out on May 14th.
Dr. Weber suggested Anti PD-1 if Zelboraf fails (I don't like the idea of a 28 day wash). He said that he would reassess depending on what new trials are out there, if necessary. He was very reassuring and Jeff really liked him. Melissa (Jeff's wife) and I want to know what some other melanoma specialists think.
Sorry about the flight info…I know that doesn't help you. Take care.
Bridgette (Jeff's Mom)
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- April 28, 2012 at 12:22 am
Hi Marie,
PALS sent vouchers from Southwest. I guess Southwest doesn't fly to LA??
We haven't secured flights to LA yet – we may end up paying for this out of pocket. Jeff is heading out on May 14th.
Dr. Weber suggested Anti PD-1 if Zelboraf fails (I don't like the idea of a 28 day wash). He said that he would reassess depending on what new trials are out there, if necessary. He was very reassuring and Jeff really liked him. Melissa (Jeff's wife) and I want to know what some other melanoma specialists think.
Sorry about the flight info…I know that doesn't help you. Take care.
Bridgette (Jeff's Mom)
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- April 28, 2012 at 12:22 am
Hi Marie,
PALS sent vouchers from Southwest. I guess Southwest doesn't fly to LA??
We haven't secured flights to LA yet – we may end up paying for this out of pocket. Jeff is heading out on May 14th.
Dr. Weber suggested Anti PD-1 if Zelboraf fails (I don't like the idea of a 28 day wash). He said that he would reassess depending on what new trials are out there, if necessary. He was very reassuring and Jeff really liked him. Melissa (Jeff's wife) and I want to know what some other melanoma specialists think.
Sorry about the flight info…I know that doesn't help you. Take care.
Bridgette (Jeff's Mom)
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- April 27, 2012 at 9:33 pm
Hi Marie,
Call Amanda Ranieri at PALS Services. She really was wonderful. You have to show need and that you cannot afford to fly commercially. There are a bunch of forms to fill out and your doctor has to sign a release form. Here's the information:
Amanda Ranieri at PALS Services – Patient Airlift Services
Her direct phone # 516.300.1660 ext. 104
Again, if it wasn't for Boots, we never would have known who to call to get that flight down to see Dr. Weber. I am surprised and so saddened by the news of her passing.
Thanks for the support – hoping Dr. Hamid or Dr. Ribas can give us some more options for Plan B if Zelboraf fails. We have Dr. Weber's recommendations (he will help us) and want to know if the other 2 concur with Dr. W's point of view.
Take care and God Bless!
Bridgette (Jeff's MOM)
-
- April 27, 2012 at 6:04 pm
Hi Bridgette,
I have no input about Zelboraf but I agree with you about Boots. I know that she told you about the airfare service for cancer patients. She was a gving person and will be missed.
I live in Las Vegas and have to commute to LA to Dr. Ribas at UCLA. I want to wish your son luck on his consult with Dr. Ribas & Hamid.
Will you son's flight to LA be able to get subsidiazed by any cancer service or will he be getting free air service. I have been looking to get sone help with my flights but cannot find anyone to help.
Best Wishes
Marie
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- April 27, 2012 at 8:23 pm
My 38-year-old husband has been on Zelboraf for about 6 months. The joint pain and sun sensitivity are the worst side effects. The joint pain isn’t any better now than it was in the beginning and like your son, once he’s up and moving, it’s a bit better. Tylenol doesn’t help him. Warm baths and Icy Hot seem to relieve the pain a bit. He also knows that whatever joint hurts today probably will only hurt for a few days until the pain moves somewhere else. The pain for him seems worse on days after he’s been really active (although with 3 young boys, he’s usually really active). We haven’t found much that helps, but s theory is the pain is better than the alternative. -
- April 27, 2012 at 8:23 pm
My 38-year-old husband has been on Zelboraf for about 6 months. The joint pain and sun sensitivity are the worst side effects. The joint pain isn’t any better now than it was in the beginning and like your son, once he’s up and moving, it’s a bit better. Tylenol doesn’t help him. Warm baths and Icy Hot seem to relieve the pain a bit. He also knows that whatever joint hurts today probably will only hurt for a few days until the pain moves somewhere else. The pain for him seems worse on days after he’s been really active (although with 3 young boys, he’s usually really active). We haven’t found much that helps, but s theory is the pain is better than the alternative. -
- April 27, 2012 at 8:23 pm
My 38-year-old husband has been on Zelboraf for about 6 months. The joint pain and sun sensitivity are the worst side effects. The joint pain isn’t any better now than it was in the beginning and like your son, once he’s up and moving, it’s a bit better. Tylenol doesn’t help him. Warm baths and Icy Hot seem to relieve the pain a bit. He also knows that whatever joint hurts today probably will only hurt for a few days until the pain moves somewhere else. The pain for him seems worse on days after he’s been really active (although with 3 young boys, he’s usually really active). We haven’t found much that helps, but s theory is the pain is better than the alternative. -
- April 27, 2012 at 10:33 pm
Sorry to hear about that your son is having so much trouble with joint pain. My dad continues after 7 months to have pain that moves daily from joint to joint. I wouldn't say it is severe though. Sorry I cant advice a helpful remedy.
I'm so sad to hear how aggressively MM took Boots, I just can't believe it. It frightens me because the Zelboraf has started to loose it's effectiveness on my dad and his liver is stable too but there is growth elsewhere. We are having a PET next week and hoping to move onto MEK.
Stay strong and remain positive..
Take care
Nahmi from Melbourne
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- April 27, 2012 at 10:33 pm
Sorry to hear about that your son is having so much trouble with joint pain. My dad continues after 7 months to have pain that moves daily from joint to joint. I wouldn't say it is severe though. Sorry I cant advice a helpful remedy.
I'm so sad to hear how aggressively MM took Boots, I just can't believe it. It frightens me because the Zelboraf has started to loose it's effectiveness on my dad and his liver is stable too but there is growth elsewhere. We are having a PET next week and hoping to move onto MEK.
Stay strong and remain positive..
Take care
Nahmi from Melbourne
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- April 27, 2012 at 10:33 pm
Sorry to hear about that your son is having so much trouble with joint pain. My dad continues after 7 months to have pain that moves daily from joint to joint. I wouldn't say it is severe though. Sorry I cant advice a helpful remedy.
I'm so sad to hear how aggressively MM took Boots, I just can't believe it. It frightens me because the Zelboraf has started to loose it's effectiveness on my dad and his liver is stable too but there is growth elsewhere. We are having a PET next week and hoping to move onto MEK.
Stay strong and remain positive..
Take care
Nahmi from Melbourne
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- April 29, 2012 at 3:44 pm
Hi Bridgette,
My mom had the same side effect on Zelboraf. Her joint pain was so extreme, she couldn't even stand to be touched. She was taking the maximum dose of Vicodin and it was doing very little to relieve the pain. At her 1 month check up, her oncologist cut her dose in half to 480mg twice a day and that helped her tremendously. What a change in her attitude and activity level. He said the higher dose was actually toxic for her and said the lower dose would have the same effect on the melanoma. Of course, every patient is different, but it might be worth bringing it up at his next visit. Hope that helps a little. I know what you are feeling watching someone you love dearly suffer through this disease. My thoughts and prayers are with you.
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- April 29, 2012 at 3:44 pm
Hi Bridgette,
My mom had the same side effect on Zelboraf. Her joint pain was so extreme, she couldn't even stand to be touched. She was taking the maximum dose of Vicodin and it was doing very little to relieve the pain. At her 1 month check up, her oncologist cut her dose in half to 480mg twice a day and that helped her tremendously. What a change in her attitude and activity level. He said the higher dose was actually toxic for her and said the lower dose would have the same effect on the melanoma. Of course, every patient is different, but it might be worth bringing it up at his next visit. Hope that helps a little. I know what you are feeling watching someone you love dearly suffer through this disease. My thoughts and prayers are with you.
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- April 29, 2012 at 3:44 pm
Hi Bridgette,
My mom had the same side effect on Zelboraf. Her joint pain was so extreme, she couldn't even stand to be touched. She was taking the maximum dose of Vicodin and it was doing very little to relieve the pain. At her 1 month check up, her oncologist cut her dose in half to 480mg twice a day and that helped her tremendously. What a change in her attitude and activity level. He said the higher dose was actually toxic for her and said the lower dose would have the same effect on the melanoma. Of course, every patient is different, but it might be worth bringing it up at his next visit. Hope that helps a little. I know what you are feeling watching someone you love dearly suffer through this disease. My thoughts and prayers are with you.
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- April 29, 2012 at 4:09 pm
The only thing that comes to mind is Capsaicin. Folks put Capsaicin cream on joints to help relieve pain. You can also take it in capsule form, but why not apply it directly where it hurts rather than make it travel through the digestive tract.
http://osteoarthritis.about.com/od/painrelief/a/capsaicin.htm
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- April 29, 2012 at 4:09 pm
The only thing that comes to mind is Capsaicin. Folks put Capsaicin cream on joints to help relieve pain. You can also take it in capsule form, but why not apply it directly where it hurts rather than make it travel through the digestive tract.
http://osteoarthritis.about.com/od/painrelief/a/capsaicin.htm
-
- April 29, 2012 at 4:09 pm
The only thing that comes to mind is Capsaicin. Folks put Capsaicin cream on joints to help relieve pain. You can also take it in capsule form, but why not apply it directly where it hurts rather than make it travel through the digestive tract.
http://osteoarthritis.about.com/od/painrelief/a/capsaicin.htm
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- June 22, 2014 at 5:08 pm
Hi
My name is Tim and I have been dealing with melanoma for the last 20 years.
The last 16 have been stage four. I consider myself a lab rat as every new trial that comes out I seem to recieve. I was on Zelboraf from 2012 to 2013. Aside from severe sun burn I to experienced joint pain. Be careful. Although I am 60Yrs old I have no family history of joint promblems, but I am now looking at hip replacement as the drug has eaten away my joints. wether it was just teh Zelboraf or the follow up of chemo
I wish I had followed the treatment more carefully. My best to your son and please keep a close eye. The drug company is still learning about the side effects
Best wishes
Tim
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- June 22, 2014 at 5:08 pm
Hi
My name is Tim and I have been dealing with melanoma for the last 20 years.
The last 16 have been stage four. I consider myself a lab rat as every new trial that comes out I seem to recieve. I was on Zelboraf from 2012 to 2013. Aside from severe sun burn I to experienced joint pain. Be careful. Although I am 60Yrs old I have no family history of joint promblems, but I am now looking at hip replacement as the drug has eaten away my joints. wether it was just teh Zelboraf or the follow up of chemo
I wish I had followed the treatment more carefully. My best to your son and please keep a close eye. The drug company is still learning about the side effects
Best wishes
Tim
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- June 22, 2014 at 5:08 pm
Hi
My name is Tim and I have been dealing with melanoma for the last 20 years.
The last 16 have been stage four. I consider myself a lab rat as every new trial that comes out I seem to recieve. I was on Zelboraf from 2012 to 2013. Aside from severe sun burn I to experienced joint pain. Be careful. Although I am 60Yrs old I have no family history of joint promblems, but I am now looking at hip replacement as the drug has eaten away my joints. wether it was just teh Zelboraf or the follow up of chemo
I wish I had followed the treatment more carefully. My best to your son and please keep a close eye. The drug company is still learning about the side effects
Best wishes
Tim
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