› Forums › General Melanoma Community › Severity of Zelboraf joint pain?
- This topic has 21 replies, 4 voices, and was last updated 11 years ago by
bkinman.
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- March 6, 2013 at 10:57 pm
I see on here where many people are dealing with joint pain from the Zelboraf. I just started it 2/21/13 and started 3 pills twice a day on 2/28/13. Within 3 days of the increased dose I had a terible rash all over and terrible joint pain. I could hardly walk. I am still working and need to as long as I can. Are you guys living with severe joint pain that keeps you from walking, grasping a pen, pouring a glass drinkg from a bottle/pitcher? THe onc.
I see on here where many people are dealing with joint pain from the Zelboraf. I just started it 2/21/13 and started 3 pills twice a day on 2/28/13. Within 3 days of the increased dose I had a terible rash all over and terrible joint pain. I could hardly walk. I am still working and need to as long as I can. Are you guys living with severe joint pain that keeps you from walking, grasping a pen, pouring a glass drinkg from a bottle/pitcher? THe onc. took me off z yesterday for a few days. He said if I was better enough Friday (3 days off) I could start back on the z otherwise come to see him Monday and we will asses and start back on the low dose. I can put up with the itching even though it is terrible, but I cant function with the severtiy of joint pain I had the last 2 days. It is getting better today and is tolerable. I am back at work. Any input would be greatly appreciated.
Becky
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- March 7, 2013 at 2:50 am
Becky,I have certainly been in your shoes with Zel. I currently take 2 Aleve twice a day, plus prednisone, and I’m on an intermittent dosing schedule of 2 wks on/ 1 wk off – 3 tabs twice a day, all because I have such a hard time tolerating it. Been hospitalized twice.
My dr is very knowledgeable and has insisted from the beginning that he would not put me on 2×2, he feels it isnt effective.
There are options! Some studies in mice showed that the intermittent dosing can delay resistance and although there are no human studies I know of, some people are having success with it.
Good luck!
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- March 7, 2013 at 2:50 am
Becky,I have certainly been in your shoes with Zel. I currently take 2 Aleve twice a day, plus prednisone, and I’m on an intermittent dosing schedule of 2 wks on/ 1 wk off – 3 tabs twice a day, all because I have such a hard time tolerating it. Been hospitalized twice.
My dr is very knowledgeable and has insisted from the beginning that he would not put me on 2×2, he feels it isnt effective.
There are options! Some studies in mice showed that the intermittent dosing can delay resistance and although there are no human studies I know of, some people are having success with it.
Good luck!
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- March 7, 2013 at 2:50 am
Becky,I have certainly been in your shoes with Zel. I currently take 2 Aleve twice a day, plus prednisone, and I’m on an intermittent dosing schedule of 2 wks on/ 1 wk off – 3 tabs twice a day, all because I have such a hard time tolerating it. Been hospitalized twice.
My dr is very knowledgeable and has insisted from the beginning that he would not put me on 2×2, he feels it isnt effective.
There are options! Some studies in mice showed that the intermittent dosing can delay resistance and although there are no human studies I know of, some people are having success with it.
Good luck!
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- March 7, 2013 at 7:46 am
I had similar trouble. I was hospitalised with little/no use of most joints after about 5 days on 4 tabs twice a day. I had a week off and then tried 3 tabs twice a day and had a reduced reaction but still after 7 days it again became severely restrictive and I have a crawling 8 month old baby so really need to be able to grab things. No painkillers or anti inflammatories seemed to have any effect with me but now I am currently taking 2 tabs twice a day and managing to get to about 3 weeks before it becomes too bad.I haven’t had scans yet since starting the lower dose but scans after about 3 weeks on and off 3/4 tabs suggested it may be working on some. My doctor suggested reviewing options for taking once it’s clearer at my next set of scans.
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- March 7, 2013 at 7:46 am
I had similar trouble. I was hospitalised with little/no use of most joints after about 5 days on 4 tabs twice a day. I had a week off and then tried 3 tabs twice a day and had a reduced reaction but still after 7 days it again became severely restrictive and I have a crawling 8 month old baby so really need to be able to grab things. No painkillers or anti inflammatories seemed to have any effect with me but now I am currently taking 2 tabs twice a day and managing to get to about 3 weeks before it becomes too bad.I haven’t had scans yet since starting the lower dose but scans after about 3 weeks on and off 3/4 tabs suggested it may be working on some. My doctor suggested reviewing options for taking once it’s clearer at my next set of scans.
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- March 7, 2013 at 7:46 am
I had similar trouble. I was hospitalised with little/no use of most joints after about 5 days on 4 tabs twice a day. I had a week off and then tried 3 tabs twice a day and had a reduced reaction but still after 7 days it again became severely restrictive and I have a crawling 8 month old baby so really need to be able to grab things. No painkillers or anti inflammatories seemed to have any effect with me but now I am currently taking 2 tabs twice a day and managing to get to about 3 weeks before it becomes too bad.I haven’t had scans yet since starting the lower dose but scans after about 3 weeks on and off 3/4 tabs suggested it may be working on some. My doctor suggested reviewing options for taking once it’s clearer at my next set of scans.
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- March 7, 2013 at 8:02 am
I had similar trouble. I was hospitalised with little/no use of most joints after about 5 days on 4 tabs twice a day. I had a week off and then tried 3 tabs twice a day and had a reduced reaction but still after 7 days it again became severely restrictive and I have a crawling 8 month old baby so really need to be able to grab things. No painkillers or anti inflammatories seemed to have any effect with me but now I am currently taking 2 tabs twice a day and managing to get to about 3 weeks before it becomes too bad.I haven’t had scans yet since starting the lower dose but scans after about 3 weeks on and off 3/4 tabs suggested it may be working on some. My doctor suggested reviewing options for taking once it’s clearer at my next set of scans.
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- March 7, 2013 at 8:02 am
I had similar trouble. I was hospitalised with little/no use of most joints after about 5 days on 4 tabs twice a day. I had a week off and then tried 3 tabs twice a day and had a reduced reaction but still after 7 days it again became severely restrictive and I have a crawling 8 month old baby so really need to be able to grab things. No painkillers or anti inflammatories seemed to have any effect with me but now I am currently taking 2 tabs twice a day and managing to get to about 3 weeks before it becomes too bad.I haven’t had scans yet since starting the lower dose but scans after about 3 weeks on and off 3/4 tabs suggested it may be working on some. My doctor suggested reviewing options for taking once it’s clearer at my next set of scans.
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- March 7, 2013 at 8:02 am
I had similar trouble. I was hospitalised with little/no use of most joints after about 5 days on 4 tabs twice a day. I had a week off and then tried 3 tabs twice a day and had a reduced reaction but still after 7 days it again became severely restrictive and I have a crawling 8 month old baby so really need to be able to grab things. No painkillers or anti inflammatories seemed to have any effect with me but now I am currently taking 2 tabs twice a day and managing to get to about 3 weeks before it becomes too bad.I haven’t had scans yet since starting the lower dose but scans after about 3 weeks on and off 3/4 tabs suggested it may be working on some. My doctor suggested reviewing options for taking once it’s clearer at my next set of scans.
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- March 7, 2013 at 5:13 pm
When I came off the first time it took about 5 days for me to be able to pick things up again like cups etc. On the lower dose it doesn’t take as long to return to normal, although I think there may be some damage to my hands and wrists now as I have general weakness even when the pain subsides whilst off the z. -
- March 7, 2013 at 5:13 pm
When I came off the first time it took about 5 days for me to be able to pick things up again like cups etc. On the lower dose it doesn’t take as long to return to normal, although I think there may be some damage to my hands and wrists now as I have general weakness even when the pain subsides whilst off the z. -
- March 7, 2013 at 5:13 pm
When I came off the first time it took about 5 days for me to be able to pick things up again like cups etc. On the lower dose it doesn’t take as long to return to normal, although I think there may be some damage to my hands and wrists now as I have general weakness even when the pain subsides whilst off the z. -
- March 7, 2013 at 10:54 pm
Becky, had similar side effects rash,joint pain, and more. Original dose was reduced from 4 (am) + 4 (pm) to 2 & 2 most side effects have subsided except I keep breaking out with cancerous growth on various parts of my skin, primairily legs.
FR
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- April 11, 2013 at 9:17 pm
Wanted to update on my status. Today is 4/11/13. I went off Z for a week in March then started back at the low dose (2am 2pm) then 2am, 3pm and worked my way up to 4am and 4pm this monday, 4/8/13. I still have the joint pain, but it is not debilitating and goes from joint to joint. I mostly take Lortab for pain when it gets bad. He put me on celebrex 200 mg twice daily. The rash (I guess you still call it that) is still there, but does not itch. Just looks like bumps on each of my pores. Skin on my face stays pretty red but finally sloughed off some of the roughness this am, maybe it will get softer. My hair has begun to come out some. I can see more of my scalp. Eyebrows are leaving me, but can still pull them off with some brow powder stuff I got at Sally's Beauty supply. I go for my follow-up scans in TX Monday. I have lots of people praying for me, so I am believing for good results.
Best,
Becky
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- April 11, 2013 at 9:17 pm
Wanted to update on my status. Today is 4/11/13. I went off Z for a week in March then started back at the low dose (2am 2pm) then 2am, 3pm and worked my way up to 4am and 4pm this monday, 4/8/13. I still have the joint pain, but it is not debilitating and goes from joint to joint. I mostly take Lortab for pain when it gets bad. He put me on celebrex 200 mg twice daily. The rash (I guess you still call it that) is still there, but does not itch. Just looks like bumps on each of my pores. Skin on my face stays pretty red but finally sloughed off some of the roughness this am, maybe it will get softer. My hair has begun to come out some. I can see more of my scalp. Eyebrows are leaving me, but can still pull them off with some brow powder stuff I got at Sally's Beauty supply. I go for my follow-up scans in TX Monday. I have lots of people praying for me, so I am believing for good results.
Best,
Becky
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- April 11, 2013 at 9:17 pm
Wanted to update on my status. Today is 4/11/13. I went off Z for a week in March then started back at the low dose (2am 2pm) then 2am, 3pm and worked my way up to 4am and 4pm this monday, 4/8/13. I still have the joint pain, but it is not debilitating and goes from joint to joint. I mostly take Lortab for pain when it gets bad. He put me on celebrex 200 mg twice daily. The rash (I guess you still call it that) is still there, but does not itch. Just looks like bumps on each of my pores. Skin on my face stays pretty red but finally sloughed off some of the roughness this am, maybe it will get softer. My hair has begun to come out some. I can see more of my scalp. Eyebrows are leaving me, but can still pull them off with some brow powder stuff I got at Sally's Beauty supply. I go for my follow-up scans in TX Monday. I have lots of people praying for me, so I am believing for good results.
Best,
Becky
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