› Forums › General Melanoma Community › Question: Zelboraf and pain
- This topic has 12 replies, 4 voices, and was last updated 10 years, 7 months ago by bj63.
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- September 5, 2013 at 8:07 am
Hello,
Hello,
I have a question about Zelboraf and pain as a side effect. My husband is taking Z for more than 8 months, 2×3 pills. He's always had manageable side effects. For some weeks now he is complaining about more and more pain (joint pain, skin pain as soon as he slightly bumps into something, shoulder pain) and weakness in his muscles. He has tried several pain reliefs but nothing really helped he said. He has also been checked about possible bone mets, luckily nothing was found. I am searching now for something that can help him. He doesn't sleep properly and the pain makes him more and more kind of depressive. Does anyone have experiences with alternative pain relief, accupuncture or anything else? Is it worth trying or should he ask for stronger pain relief medication?
The situation at the moment is getting more and more difficult as his constitution is influencing our whole family life. We are so happy that he is such a good responder on Z but currently we can not enjoy it.
Thank you,
Jenny
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- September 5, 2013 at 11:52 am
Jenny, my heart goes out to the two of you as you manage these side effects. I had a lot of joint and muscle pain while on Zelboraf. I only tried Ibuprofen, and it brought a little relief. Also…warm baths seemed to soothe things a bit. I know the days on zel with such rough side effects can be so challenging. Like you said – on the one hand, you are so happy it is working well, but on the other hand, you cant imagine continuing on like this indefinitely. On a good note, MANY people say their side effects lessen over time. Even though his seems worse at the moment, he may begin to do better. Another thing I will mention is vitamin D. Many of us, esp on zel ( due to limited sun exposure) are deficient, and that alone can cause muscle and joint pain. Our oldest daughter had sever muscle and joint pain and was found to be deficient. She started high doses prescribed, and in very short order was like a new person. Just a small thing to consider and poss have his levels checked. It wont fix everything, but might help a little.
I do hope he can find some relief soon,
Tina
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- September 5, 2013 at 11:52 am
Jenny, my heart goes out to the two of you as you manage these side effects. I had a lot of joint and muscle pain while on Zelboraf. I only tried Ibuprofen, and it brought a little relief. Also…warm baths seemed to soothe things a bit. I know the days on zel with such rough side effects can be so challenging. Like you said – on the one hand, you are so happy it is working well, but on the other hand, you cant imagine continuing on like this indefinitely. On a good note, MANY people say their side effects lessen over time. Even though his seems worse at the moment, he may begin to do better. Another thing I will mention is vitamin D. Many of us, esp on zel ( due to limited sun exposure) are deficient, and that alone can cause muscle and joint pain. Our oldest daughter had sever muscle and joint pain and was found to be deficient. She started high doses prescribed, and in very short order was like a new person. Just a small thing to consider and poss have his levels checked. It wont fix everything, but might help a little.
I do hope he can find some relief soon,
Tina
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- September 5, 2013 at 11:52 am
Jenny, my heart goes out to the two of you as you manage these side effects. I had a lot of joint and muscle pain while on Zelboraf. I only tried Ibuprofen, and it brought a little relief. Also…warm baths seemed to soothe things a bit. I know the days on zel with such rough side effects can be so challenging. Like you said – on the one hand, you are so happy it is working well, but on the other hand, you cant imagine continuing on like this indefinitely. On a good note, MANY people say their side effects lessen over time. Even though his seems worse at the moment, he may begin to do better. Another thing I will mention is vitamin D. Many of us, esp on zel ( due to limited sun exposure) are deficient, and that alone can cause muscle and joint pain. Our oldest daughter had sever muscle and joint pain and was found to be deficient. She started high doses prescribed, and in very short order was like a new person. Just a small thing to consider and poss have his levels checked. It wont fix everything, but might help a little.
I do hope he can find some relief soon,
Tina
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- September 5, 2013 at 12:43 pm
Thank you, Tina! I will focus on your tipps. He had his last Vitamin D check 6 months ago and level was fine, we should repeat it in the next weeks, just to be sure. A warm bath really helps he says, unfortunately we don't have a tub in our current flat, but any time we are somewhere with a tub he takes a bath. Today I also made an appointment with a doctor specialised on rehabilition medicine to see if he has got a good idea.
Tina, I hope you are doing fine with your treatment, Anti-PD1, correct?
Jenny
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- September 5, 2013 at 4:57 pm
Joint pain during the first couple of months made my days difficult.
I found that my movements although they did not hurt me caused an overreaction from the immune system.
I changed a toddler on the floor several times and could barely walk all weekend-same when I climbed a chair.
I gave a shot to husband and couple hours later had pain in thumb to wrist for days.I walk normally however when going over threshholds and stairs–I try to move carefully.
My hands have hurt for 2 months because of peeling fresh produce–shoulder hurts from lying on it at night.
I thought I might be over it but did get on floor twice recently to adjust a sofa recliner and had pain in knees next day.
For every ache I have had–there has been a cause.Rest for several days usually helps.I had two small skin cancers removed yesterday on my arms so I am anxious to see if they will feel better because I will not be using them as much.
I take 2 x4 pills pr day.My recent PET showed that lesions on liver and lungs were gone.Lymph glands had went from 12 to 2 on the uptake.I am starting my sixth month.
When you can't move around ,itis very discouraging.It could be something as simple as carrying a small child often.
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- September 5, 2013 at 4:57 pm
Joint pain during the first couple of months made my days difficult.
I found that my movements although they did not hurt me caused an overreaction from the immune system.
I changed a toddler on the floor several times and could barely walk all weekend-same when I climbed a chair.
I gave a shot to husband and couple hours later had pain in thumb to wrist for days.I walk normally however when going over threshholds and stairs–I try to move carefully.
My hands have hurt for 2 months because of peeling fresh produce–shoulder hurts from lying on it at night.
I thought I might be over it but did get on floor twice recently to adjust a sofa recliner and had pain in knees next day.
For every ache I have had–there has been a cause.Rest for several days usually helps.I had two small skin cancers removed yesterday on my arms so I am anxious to see if they will feel better because I will not be using them as much.
I take 2 x4 pills pr day.My recent PET showed that lesions on liver and lungs were gone.Lymph glands had went from 12 to 2 on the uptake.I am starting my sixth month.
When you can't move around ,itis very discouraging.It could be something as simple as carrying a small child often.
-
- September 5, 2013 at 4:57 pm
Joint pain during the first couple of months made my days difficult.
I found that my movements although they did not hurt me caused an overreaction from the immune system.
I changed a toddler on the floor several times and could barely walk all weekend-same when I climbed a chair.
I gave a shot to husband and couple hours later had pain in thumb to wrist for days.I walk normally however when going over threshholds and stairs–I try to move carefully.
My hands have hurt for 2 months because of peeling fresh produce–shoulder hurts from lying on it at night.
I thought I might be over it but did get on floor twice recently to adjust a sofa recliner and had pain in knees next day.
For every ache I have had–there has been a cause.Rest for several days usually helps.I had two small skin cancers removed yesterday on my arms so I am anxious to see if they will feel better because I will not be using them as much.
I take 2 x4 pills pr day.My recent PET showed that lesions on liver and lungs were gone.Lymph glands had went from 12 to 2 on the uptake.I am starting my sixth month.
When you can't move around ,itis very discouraging.It could be something as simple as carrying a small child often.
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- September 10, 2013 at 5:30 pm
I've noted that bumps and bruises seem to hurt more and that my skin seems thinner since I've been taking the Zelboraf. I bumped my shin a couple weeks ago while moving my son into his college dorm room and it felt like my leg was on fire. I remember thinking at the time that it seemed like it hurt a lot more than it should. I still have a knot there. I'm not sure much really can be done for that kind of issue, except to exercise more caution – or wear shin guards all the time.
The intermittent joint and ligament pain is something I've had frequently. I can only speak for myself, but paradoxically enough, getting more mild-to-moderate exercise seems to have helped it somewhat for me. It peaked around the 6th month and has started to decline somewhat. I've been careful not to overdo it but I've been trying to get out and simply walk for a half hour a few evenings per week, when the sun is low. I've also found that, for me, taking plain Aspirin seems to work better than Ibuprofen or Naproxen for the joint pain, though I'm not sure why. Someone else mentioned vitamins. I take a daily multi-vitamin. I really don't know if it helps. I asked my doctor about it and he seemed to think it certainly would do no harm and it might help. I dunno. Maybe it's just the placebo effect.
Depression is something that many of us likely have to battle when dealing with the stress of a disease like Melanoma. I know my thoughts get a little dark sometimes. If he's feeling a little down and it is interfering with his ability to function on a day-by-day basis, then he should talk to his doctor about it. It is easy to be consumed with worry about this disease. I'm making adjustments to my lifestyle to accomodate issues like the sun sensitivity, but I refuse to let this beast rule me for whatever time I've got left. As I'm fond of saying, "I'm just gonna go until I can't go no more".
bj
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- September 10, 2013 at 5:30 pm
I've noted that bumps and bruises seem to hurt more and that my skin seems thinner since I've been taking the Zelboraf. I bumped my shin a couple weeks ago while moving my son into his college dorm room and it felt like my leg was on fire. I remember thinking at the time that it seemed like it hurt a lot more than it should. I still have a knot there. I'm not sure much really can be done for that kind of issue, except to exercise more caution – or wear shin guards all the time.
The intermittent joint and ligament pain is something I've had frequently. I can only speak for myself, but paradoxically enough, getting more mild-to-moderate exercise seems to have helped it somewhat for me. It peaked around the 6th month and has started to decline somewhat. I've been careful not to overdo it but I've been trying to get out and simply walk for a half hour a few evenings per week, when the sun is low. I've also found that, for me, taking plain Aspirin seems to work better than Ibuprofen or Naproxen for the joint pain, though I'm not sure why. Someone else mentioned vitamins. I take a daily multi-vitamin. I really don't know if it helps. I asked my doctor about it and he seemed to think it certainly would do no harm and it might help. I dunno. Maybe it's just the placebo effect.
Depression is something that many of us likely have to battle when dealing with the stress of a disease like Melanoma. I know my thoughts get a little dark sometimes. If he's feeling a little down and it is interfering with his ability to function on a day-by-day basis, then he should talk to his doctor about it. It is easy to be consumed with worry about this disease. I'm making adjustments to my lifestyle to accomodate issues like the sun sensitivity, but I refuse to let this beast rule me for whatever time I've got left. As I'm fond of saying, "I'm just gonna go until I can't go no more".
bj
-
- September 10, 2013 at 5:30 pm
I've noted that bumps and bruises seem to hurt more and that my skin seems thinner since I've been taking the Zelboraf. I bumped my shin a couple weeks ago while moving my son into his college dorm room and it felt like my leg was on fire. I remember thinking at the time that it seemed like it hurt a lot more than it should. I still have a knot there. I'm not sure much really can be done for that kind of issue, except to exercise more caution – or wear shin guards all the time.
The intermittent joint and ligament pain is something I've had frequently. I can only speak for myself, but paradoxically enough, getting more mild-to-moderate exercise seems to have helped it somewhat for me. It peaked around the 6th month and has started to decline somewhat. I've been careful not to overdo it but I've been trying to get out and simply walk for a half hour a few evenings per week, when the sun is low. I've also found that, for me, taking plain Aspirin seems to work better than Ibuprofen or Naproxen for the joint pain, though I'm not sure why. Someone else mentioned vitamins. I take a daily multi-vitamin. I really don't know if it helps. I asked my doctor about it and he seemed to think it certainly would do no harm and it might help. I dunno. Maybe it's just the placebo effect.
Depression is something that many of us likely have to battle when dealing with the stress of a disease like Melanoma. I know my thoughts get a little dark sometimes. If he's feeling a little down and it is interfering with his ability to function on a day-by-day basis, then he should talk to his doctor about it. It is easy to be consumed with worry about this disease. I'm making adjustments to my lifestyle to accomodate issues like the sun sensitivity, but I refuse to let this beast rule me for whatever time I've got left. As I'm fond of saying, "I'm just gonna go until I can't go no more".
bj
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- September 5, 2013 at 12:43 pm
Thank you, Tina! I will focus on your tipps. He had his last Vitamin D check 6 months ago and level was fine, we should repeat it in the next weeks, just to be sure. A warm bath really helps he says, unfortunately we don't have a tub in our current flat, but any time we are somewhere with a tub he takes a bath. Today I also made an appointment with a doctor specialised on rehabilition medicine to see if he has got a good idea.
Tina, I hope you are doing fine with your treatment, Anti-PD1, correct?
Jenny
-
- September 5, 2013 at 12:43 pm
Thank you, Tina! I will focus on your tipps. He had his last Vitamin D check 6 months ago and level was fine, we should repeat it in the next weeks, just to be sure. A warm bath really helps he says, unfortunately we don't have a tub in our current flat, but any time we are somewhere with a tub he takes a bath. Today I also made an appointment with a doctor specialised on rehabilition medicine to see if he has got a good idea.
Tina, I hope you are doing fine with your treatment, Anti-PD1, correct?
Jenny
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