› Forums › General Melanoma Community › NOW the JOINT PAIN has appeared….
- This topic has 18 replies, 4 voices, and was last updated 13 years, 1 month ago by
Bonnets.
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- May 1, 2012 at 9:13 pm
Someone/anyone tell me about your joint pain with ZEL ? Wayne got up this morning (day 8 on Zelboraf) and could barely move. The pain has gotten quite intense as the day has gone on.
What do you do for it ? Pain patches, pain meds, etc ? Any secrets or alternative meds that helps ?
THANKS AGAIN,
Nancy (devoted wife of Warrior Wayne)
Someone/anyone tell me about your joint pain with ZEL ? Wayne got up this morning (day 8 on Zelboraf) and could barely move. The pain has gotten quite intense as the day has gone on.
What do you do for it ? Pain patches, pain meds, etc ? Any secrets or alternative meds that helps ?
THANKS AGAIN,
Nancy (devoted wife of Warrior Wayne)
- Replies
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- May 1, 2012 at 11:44 pm
Hi Nancy,
My son is on Zelboraf – or should I say he was on Zelboraf? He just went in for a third consultation with another oncologist (in case he has progression on this medication) and the doctor took one look at his swollen joints and pulled him off the medication. He is now on a low dose of steroids! He could hardly walk, had a fever, his joints were swollen and very tender to the touch. His right ankle was so swollen they had to x-ray it to see if it was broken. He was in terrible pain and ibuprofen wasn't helping. They want to "tamp" down his autoimmune response to the medication with the steroids and then reintroduce the Zelboraf later next week. I wish his immune response would attack the melanoma and not his joints 🙁
I think Zelboraf is a miracle drug and I sure hope your husband doesn't have these severe side effects. Jeff was using icy hot and ibuprofen when things were more manageable. Also, it seemed like the pain would move from one spot to another and was worse after a very active day running around with his kids. So, tell your husband to take it easy and take 3-4 ibuprofen when in pain. Have him elevate his feet and try the icy hot to see if it helps. Good luck and keep us updated on his progress.
Take care,
Bridgette (Jeff's Mom)
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- May 2, 2012 at 12:38 am
Wow, sounds like the pseudo gout my h usband experienced recently after his open heart surgery! He was on crutches it was so bad, moved from the ankle, to the hand and elbow and back again. It was really miserable, wonder if this could be somewhat the same reaction. Jean
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- May 2, 2012 at 12:38 am
Wow, sounds like the pseudo gout my h usband experienced recently after his open heart surgery! He was on crutches it was so bad, moved from the ankle, to the hand and elbow and back again. It was really miserable, wonder if this could be somewhat the same reaction. Jean
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- May 2, 2012 at 12:38 am
Wow, sounds like the pseudo gout my h usband experienced recently after his open heart surgery! He was on crutches it was so bad, moved from the ankle, to the hand and elbow and back again. It was really miserable, wonder if this could be somewhat the same reaction. Jean
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- May 1, 2012 at 11:44 pm
Hi Nancy,
My son is on Zelboraf – or should I say he was on Zelboraf? He just went in for a third consultation with another oncologist (in case he has progression on this medication) and the doctor took one look at his swollen joints and pulled him off the medication. He is now on a low dose of steroids! He could hardly walk, had a fever, his joints were swollen and very tender to the touch. His right ankle was so swollen they had to x-ray it to see if it was broken. He was in terrible pain and ibuprofen wasn't helping. They want to "tamp" down his autoimmune response to the medication with the steroids and then reintroduce the Zelboraf later next week. I wish his immune response would attack the melanoma and not his joints 🙁
I think Zelboraf is a miracle drug and I sure hope your husband doesn't have these severe side effects. Jeff was using icy hot and ibuprofen when things were more manageable. Also, it seemed like the pain would move from one spot to another and was worse after a very active day running around with his kids. So, tell your husband to take it easy and take 3-4 ibuprofen when in pain. Have him elevate his feet and try the icy hot to see if it helps. Good luck and keep us updated on his progress.
Take care,
Bridgette (Jeff's Mom)
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- May 1, 2012 at 11:44 pm
Hi Nancy,
My son is on Zelboraf – or should I say he was on Zelboraf? He just went in for a third consultation with another oncologist (in case he has progression on this medication) and the doctor took one look at his swollen joints and pulled him off the medication. He is now on a low dose of steroids! He could hardly walk, had a fever, his joints were swollen and very tender to the touch. His right ankle was so swollen they had to x-ray it to see if it was broken. He was in terrible pain and ibuprofen wasn't helping. They want to "tamp" down his autoimmune response to the medication with the steroids and then reintroduce the Zelboraf later next week. I wish his immune response would attack the melanoma and not his joints 🙁
I think Zelboraf is a miracle drug and I sure hope your husband doesn't have these severe side effects. Jeff was using icy hot and ibuprofen when things were more manageable. Also, it seemed like the pain would move from one spot to another and was worse after a very active day running around with his kids. So, tell your husband to take it easy and take 3-4 ibuprofen when in pain. Have him elevate his feet and try the icy hot to see if it helps. Good luck and keep us updated on his progress.
Take care,
Bridgette (Jeff's Mom)
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- May 3, 2012 at 10:03 pm
I'm also taking Zelboraf. I've been on (and off) of it for 2 months now. It was right after the one week mark (4 pills twice a day) when I started getting the severe joint pain and muscle aches. I also got a severe rash. I tried to tough it out for a couple days and took some pain pills and slathered on the hydrocortisone creme. Finally, it was too much and I went in. My oncologist took me off Zelboraf for about a week and I took a steroid. Everything got better and we decided to lower the dosage (lowered to 3 pills twice a day) that I was on. Again, after about a week I became absolutely miserable and this time my oncologist took me off for only a couple days and lowered my dosage again. Now I am on 2 pills twice a day and I am doing substantially better. I still have the joint pain but ibuprofen helps and oddly enough I swear by a vet liniment that's used on horses and smells like icy-hot but is much more effective. I believe its called Absorbine Veterinarian Liniment and I tell you what, this stuff is amazing!!! My family used it all through our athletic years in high school for anything from a sore muscle to a jammed finger and I use it now and it instantly helps with the joint pain. Be prepared to smell like the strongest icy-hot ever (I actually like to apply it after I get home from work so I'm not bothering too many people with that strong of a smell all day). I'm hoping that lowering my dosage won't affect the effectiveness of Zelboraf and my oncologist assures me that he doesn't believe it will be a problem but I know that I would not be able to leave my bed if I was on the original dosage. And if my scans at the end of the month show that it is working, my oncologist has said that we might try to go back to the higher dosage to really kick this thing in the butt. My thoughts and prayers go out to you and your husband and I hope you find what works for him.
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- May 3, 2012 at 10:03 pm
I'm also taking Zelboraf. I've been on (and off) of it for 2 months now. It was right after the one week mark (4 pills twice a day) when I started getting the severe joint pain and muscle aches. I also got a severe rash. I tried to tough it out for a couple days and took some pain pills and slathered on the hydrocortisone creme. Finally, it was too much and I went in. My oncologist took me off Zelboraf for about a week and I took a steroid. Everything got better and we decided to lower the dosage (lowered to 3 pills twice a day) that I was on. Again, after about a week I became absolutely miserable and this time my oncologist took me off for only a couple days and lowered my dosage again. Now I am on 2 pills twice a day and I am doing substantially better. I still have the joint pain but ibuprofen helps and oddly enough I swear by a vet liniment that's used on horses and smells like icy-hot but is much more effective. I believe its called Absorbine Veterinarian Liniment and I tell you what, this stuff is amazing!!! My family used it all through our athletic years in high school for anything from a sore muscle to a jammed finger and I use it now and it instantly helps with the joint pain. Be prepared to smell like the strongest icy-hot ever (I actually like to apply it after I get home from work so I'm not bothering too many people with that strong of a smell all day). I'm hoping that lowering my dosage won't affect the effectiveness of Zelboraf and my oncologist assures me that he doesn't believe it will be a problem but I know that I would not be able to leave my bed if I was on the original dosage. And if my scans at the end of the month show that it is working, my oncologist has said that we might try to go back to the higher dosage to really kick this thing in the butt. My thoughts and prayers go out to you and your husband and I hope you find what works for him.
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- May 3, 2012 at 10:07 pm
Also wanted to add that I experience the same thing with the moving of joint pain….today it's my right ankle and everything from my right elbow down to my fingertips and my left knee, yesterday it was the right ankle and my whole left arm was swollen and hurting. I don't understand the medical aspect of the moving pain and would like to know more about what is going on there if anyone has asked the question and gotten an answer.
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- May 3, 2012 at 10:07 pm
Also wanted to add that I experience the same thing with the moving of joint pain….today it's my right ankle and everything from my right elbow down to my fingertips and my left knee, yesterday it was the right ankle and my whole left arm was swollen and hurting. I don't understand the medical aspect of the moving pain and would like to know more about what is going on there if anyone has asked the question and gotten an answer.
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- May 5, 2012 at 11:49 pm
Thank you so much for your reply. Wayne is still on 4 2 X D but boy is it every hurting him. His fever goes up so much at night that he can't sleep. 102 is the highest, but I don't like that.
He can still barely move, but MDA DOC insist he stay on the same amount of pills. He had virtually no side effects when he first started the ZELL on 2 2XD but that was too early to tell I'm sure.
Know anything about this nasty fever ?
He has lung and liver mets, spine (L5) leg (bone) and no brain mets. They are all an inch and smaller.
I don't seem to be able to get a handle on this. I too am very, very ill with lupus and fibro and all I do is cry. Well, this last flare of my own makes me do that alone.
We are trying to get house ready to sell. Live on 3 acres….wanted garden home now ! Can't keep this place up. So wish we didn't have this on our plate so early in the game. He was just diagnosed in March.
I'm a basket case all the time. Thinking this is the last day. We are like the "NOTEBOOOK MOVIE" couple…..probably tooo close, but I cannot imagine a world without him.
He has been my caretaker for decades.
I suppose to need to come here and read the board and the GOOD NEWS REPORTS more often, so that I do not conjure up all these awful scenarios in my head.
We do not have a loving supportive family. In fact, we are pretty much in this alone and his co-workers of 20 years, for the most part, won't even ask how he is. PRAISES to two of them who came today to help wth mowing yard and helping to get house spruced up for sell. Like we need to do all this right now. But we're terrified I'll be left alone, sick with it and I can't even talk to people when they come most of the time I'm sooooo very ill.
OK, you didn't ask for all that. I just don't seem to stop crying. Keep going to his funeral in my mind. Had peace, lost peace, had peace, lost peace. It depends on how I'm feeling and how I see him suffering. ROLLER COASTER !
I'll hush now because I'm bawling again.
Thanks for listening if you're still reading by now………..
Nancy (devoted wife of warrior Wayne)
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- May 5, 2012 at 11:49 pm
Thank you so much for your reply. Wayne is still on 4 2 X D but boy is it every hurting him. His fever goes up so much at night that he can't sleep. 102 is the highest, but I don't like that.
He can still barely move, but MDA DOC insist he stay on the same amount of pills. He had virtually no side effects when he first started the ZELL on 2 2XD but that was too early to tell I'm sure.
Know anything about this nasty fever ?
He has lung and liver mets, spine (L5) leg (bone) and no brain mets. They are all an inch and smaller.
I don't seem to be able to get a handle on this. I too am very, very ill with lupus and fibro and all I do is cry. Well, this last flare of my own makes me do that alone.
We are trying to get house ready to sell. Live on 3 acres….wanted garden home now ! Can't keep this place up. So wish we didn't have this on our plate so early in the game. He was just diagnosed in March.
I'm a basket case all the time. Thinking this is the last day. We are like the "NOTEBOOOK MOVIE" couple…..probably tooo close, but I cannot imagine a world without him.
He has been my caretaker for decades.
I suppose to need to come here and read the board and the GOOD NEWS REPORTS more often, so that I do not conjure up all these awful scenarios in my head.
We do not have a loving supportive family. In fact, we are pretty much in this alone and his co-workers of 20 years, for the most part, won't even ask how he is. PRAISES to two of them who came today to help wth mowing yard and helping to get house spruced up for sell. Like we need to do all this right now. But we're terrified I'll be left alone, sick with it and I can't even talk to people when they come most of the time I'm sooooo very ill.
OK, you didn't ask for all that. I just don't seem to stop crying. Keep going to his funeral in my mind. Had peace, lost peace, had peace, lost peace. It depends on how I'm feeling and how I see him suffering. ROLLER COASTER !
I'll hush now because I'm bawling again.
Thanks for listening if you're still reading by now………..
Nancy (devoted wife of warrior Wayne)
-
- May 5, 2012 at 11:49 pm
Thank you so much for your reply. Wayne is still on 4 2 X D but boy is it every hurting him. His fever goes up so much at night that he can't sleep. 102 is the highest, but I don't like that.
He can still barely move, but MDA DOC insist he stay on the same amount of pills. He had virtually no side effects when he first started the ZELL on 2 2XD but that was too early to tell I'm sure.
Know anything about this nasty fever ?
He has lung and liver mets, spine (L5) leg (bone) and no brain mets. They are all an inch and smaller.
I don't seem to be able to get a handle on this. I too am very, very ill with lupus and fibro and all I do is cry. Well, this last flare of my own makes me do that alone.
We are trying to get house ready to sell. Live on 3 acres….wanted garden home now ! Can't keep this place up. So wish we didn't have this on our plate so early in the game. He was just diagnosed in March.
I'm a basket case all the time. Thinking this is the last day. We are like the "NOTEBOOOK MOVIE" couple…..probably tooo close, but I cannot imagine a world without him.
He has been my caretaker for decades.
I suppose to need to come here and read the board and the GOOD NEWS REPORTS more often, so that I do not conjure up all these awful scenarios in my head.
We do not have a loving supportive family. In fact, we are pretty much in this alone and his co-workers of 20 years, for the most part, won't even ask how he is. PRAISES to two of them who came today to help wth mowing yard and helping to get house spruced up for sell. Like we need to do all this right now. But we're terrified I'll be left alone, sick with it and I can't even talk to people when they come most of the time I'm sooooo very ill.
OK, you didn't ask for all that. I just don't seem to stop crying. Keep going to his funeral in my mind. Had peace, lost peace, had peace, lost peace. It depends on how I'm feeling and how I see him suffering. ROLLER COASTER !
I'll hush now because I'm bawling again.
Thanks for listening if you're still reading by now………..
Nancy (devoted wife of warrior Wayne)
-
- May 3, 2012 at 10:07 pm
Also wanted to add that I experience the same thing with the moving of joint pain….today it's my right ankle and everything from my right elbow down to my fingertips and my left knee, yesterday it was the right ankle and my whole left arm was swollen and hurting. I don't understand the medical aspect of the moving pain and would like to know more about what is going on there if anyone has asked the question and gotten an answer.
-
- May 3, 2012 at 10:03 pm
I'm also taking Zelboraf. I've been on (and off) of it for 2 months now. It was right after the one week mark (4 pills twice a day) when I started getting the severe joint pain and muscle aches. I also got a severe rash. I tried to tough it out for a couple days and took some pain pills and slathered on the hydrocortisone creme. Finally, it was too much and I went in. My oncologist took me off Zelboraf for about a week and I took a steroid. Everything got better and we decided to lower the dosage (lowered to 3 pills twice a day) that I was on. Again, after about a week I became absolutely miserable and this time my oncologist took me off for only a couple days and lowered my dosage again. Now I am on 2 pills twice a day and I am doing substantially better. I still have the joint pain but ibuprofen helps and oddly enough I swear by a vet liniment that's used on horses and smells like icy-hot but is much more effective. I believe its called Absorbine Veterinarian Liniment and I tell you what, this stuff is amazing!!! My family used it all through our athletic years in high school for anything from a sore muscle to a jammed finger and I use it now and it instantly helps with the joint pain. Be prepared to smell like the strongest icy-hot ever (I actually like to apply it after I get home from work so I'm not bothering too many people with that strong of a smell all day). I'm hoping that lowering my dosage won't affect the effectiveness of Zelboraf and my oncologist assures me that he doesn't believe it will be a problem but I know that I would not be able to leave my bed if I was on the original dosage. And if my scans at the end of the month show that it is working, my oncologist has said that we might try to go back to the higher dosage to really kick this thing in the butt. My thoughts and prayers go out to you and your husband and I hope you find what works for him.
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- May 6, 2012 at 12:31 am
Sweet Nancy,
Don't worry about crying to me, I sooo know how you feel. Though the reports for my hubby came back with no node envolvement, I had many of the same feelings you are experiencing. I cudn't imagine life without my hubby Lambert. Ah yes, cried so often. We went from his open heart surgery, quite unexpected, to gout in his elbow, hand and foot to melanoma, in the space of 2 months. We are going to the derm Wed. There are 3 more spots i want checked out. Such a feeling of frusration and helplessness. As we often say, the golden years are such fun.
I remain here an reading the posts, have learned a lot, and don't feel we can consider he is totally cancer free, it's looking over our shoulder. This site is wonderful, much like a Webmd breast cancer site I was a part of when my daughter had breast cancer at 27, passed away at 33. I still am in contact with some of the women I met and shared that journey with, 10 years later!
Anyway, if you need to cry, scream share, don't hesitate. Hugs, Jean
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- May 6, 2012 at 12:31 am
Sweet Nancy,
Don't worry about crying to me, I sooo know how you feel. Though the reports for my hubby came back with no node envolvement, I had many of the same feelings you are experiencing. I cudn't imagine life without my hubby Lambert. Ah yes, cried so often. We went from his open heart surgery, quite unexpected, to gout in his elbow, hand and foot to melanoma, in the space of 2 months. We are going to the derm Wed. There are 3 more spots i want checked out. Such a feeling of frusration and helplessness. As we often say, the golden years are such fun.
I remain here an reading the posts, have learned a lot, and don't feel we can consider he is totally cancer free, it's looking over our shoulder. This site is wonderful, much like a Webmd breast cancer site I was a part of when my daughter had breast cancer at 27, passed away at 33. I still am in contact with some of the women I met and shared that journey with, 10 years later!
Anyway, if you need to cry, scream share, don't hesitate. Hugs, Jean
-
- May 6, 2012 at 12:31 am
Sweet Nancy,
Don't worry about crying to me, I sooo know how you feel. Though the reports for my hubby came back with no node envolvement, I had many of the same feelings you are experiencing. I cudn't imagine life without my hubby Lambert. Ah yes, cried so often. We went from his open heart surgery, quite unexpected, to gout in his elbow, hand and foot to melanoma, in the space of 2 months. We are going to the derm Wed. There are 3 more spots i want checked out. Such a feeling of frusration and helplessness. As we often say, the golden years are such fun.
I remain here an reading the posts, have learned a lot, and don't feel we can consider he is totally cancer free, it's looking over our shoulder. This site is wonderful, much like a Webmd breast cancer site I was a part of when my daughter had breast cancer at 27, passed away at 33. I still am in contact with some of the women I met and shared that journey with, 10 years later!
Anyway, if you need to cry, scream share, don't hesitate. Hugs, Jean
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