› Forums › General Melanoma Community › Pain on Zel?
- This topic has 27 replies, 7 voices, and was last updated 11 years, 3 months ago by
Josh.
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- December 30, 2012 at 4:17 pm
My sister has been on Zel for about 2 months, stage VI. Tumors shrunk, but pain and fatigue have been bad. She resists taking pain med and I can't get her to understand the importance of being out of pain to help her body heal. She believes that no matter what, she is supposed to feel pain even tho dr's have told her they can control the pain if she follows regimen. She has looked at this site but says she doesn't see where anyone else is having to take pain meds. She is now on a pain patch but is still having a lot of pain. Are others o
My sister has been on Zel for about 2 months, stage VI. Tumors shrunk, but pain and fatigue have been bad. She resists taking pain med and I can't get her to understand the importance of being out of pain to help her body heal. She believes that no matter what, she is supposed to feel pain even tho dr's have told her they can control the pain if she follows regimen. She has looked at this site but says she doesn't see where anyone else is having to take pain meds. She is now on a pain patch but is still having a lot of pain. Are others of you having much pain and how do you deal with it? Thanks for any input.
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- December 30, 2012 at 4:29 pm
I take 2 Aleve twice. day, plus I am on prednisone to keep the inflammation down to where its bearable. This is for muscle & joint pain caused by the medication. You don’t say what kind of pain she’s having or where, more information would be helpful. -
- December 30, 2012 at 4:29 pm
I take 2 Aleve twice. day, plus I am on prednisone to keep the inflammation down to where its bearable. This is for muscle & joint pain caused by the medication. You don’t say what kind of pain she’s having or where, more information would be helpful. -
- December 30, 2012 at 4:29 pm
I take 2 Aleve twice. day, plus I am on prednisone to keep the inflammation down to where its bearable. This is for muscle & joint pain caused by the medication. You don’t say what kind of pain she’s having or where, more information would be helpful.-
- December 30, 2012 at 4:40 pm
One of the most worrisome are what her dermatologist calls balls of infection just under the skin, she usually has up to 10 all over her body, especially painful on the soles of her feet. She can tell when they are coming up, they turn red and are very painful. She has a prescription cream she treats them with. At night she has hip,leg and foot pain where she cannot sleep. Mornings take about an hour to reach slow movement she can tolerate. Fatigue is really getting her down mentally. She is having a problem accepting she must conserve her strength for the most important things and let everything else go. She did take prednisone for severe facial rash at first, but is not on it now. I believe the cream does have prednisone. Thanks for your concern
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- December 30, 2012 at 8:11 pm
So sorry to hear about all that. If she is still on the full dose I would really push to have it reduced. I am on 3pills twice a day, I cannot tolerate the full dose. I did sleep with ice packs on my feet for awhile but that did get better.I have had 3 kinds of rash, one sounds like what you describe – the fat pads under the skin get irritated and the skin turns red and very sensitive. Mine not as bad though. I also have a hard time staying on the drug continually. Talk to your oncologist about maybe a break off the drug for a week or so.
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- December 30, 2012 at 8:11 pm
So sorry to hear about all that. If she is still on the full dose I would really push to have it reduced. I am on 3pills twice a day, I cannot tolerate the full dose. I did sleep with ice packs on my feet for awhile but that did get better.I have had 3 kinds of rash, one sounds like what you describe – the fat pads under the skin get irritated and the skin turns red and very sensitive. Mine not as bad though. I also have a hard time staying on the drug continually. Talk to your oncologist about maybe a break off the drug for a week or so.
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- December 30, 2012 at 8:11 pm
So sorry to hear about all that. If she is still on the full dose I would really push to have it reduced. I am on 3pills twice a day, I cannot tolerate the full dose. I did sleep with ice packs on my feet for awhile but that did get better.I have had 3 kinds of rash, one sounds like what you describe – the fat pads under the skin get irritated and the skin turns red and very sensitive. Mine not as bad though. I also have a hard time staying on the drug continually. Talk to your oncologist about maybe a break off the drug for a week or so.
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- January 2, 2013 at 5:16 pm
I had those knots too. I didn't get them on the soles of my feet, but I can imagine how painful that is. It was bad enough on my calves and thighs. My dermatologist called it panniculitis. They gave me 10 mg pred for a joint problem, and the knots have gone completely away. I am now down to 5 mg prednisone and they have stayed gone. I also joined the aquaease program at my local YMCA. That kept the hip and knee pain away.
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- January 2, 2013 at 5:16 pm
I had those knots too. I didn't get them on the soles of my feet, but I can imagine how painful that is. It was bad enough on my calves and thighs. My dermatologist called it panniculitis. They gave me 10 mg pred for a joint problem, and the knots have gone completely away. I am now down to 5 mg prednisone and they have stayed gone. I also joined the aquaease program at my local YMCA. That kept the hip and knee pain away.
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- January 2, 2013 at 5:16 pm
I had those knots too. I didn't get them on the soles of my feet, but I can imagine how painful that is. It was bad enough on my calves and thighs. My dermatologist called it panniculitis. They gave me 10 mg pred for a joint problem, and the knots have gone completely away. I am now down to 5 mg prednisone and they have stayed gone. I also joined the aquaease program at my local YMCA. That kept the hip and knee pain away.
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- January 2, 2013 at 5:33 pm
One other thing. I have to keep track of all the pain meds I take. When I was taking the full 8 pills a day, I took OTC pain meds at least 3 times a day most days. One caution, zelboraf and tylenol are both processed through the liver. ALL my Drs were telling me to take tylenol, until I ended up hospitalized for liver problems. (bilirubin jumped to 11,normal is under 2) Now I take ibuprofen. It was interesting to me that even the Dr. that was treating me in the hospital for my liver kept telling me to take tylenol, even when I asked, "Isn't that hard on your liver?"
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- January 2, 2013 at 5:33 pm
One other thing. I have to keep track of all the pain meds I take. When I was taking the full 8 pills a day, I took OTC pain meds at least 3 times a day most days. One caution, zelboraf and tylenol are both processed through the liver. ALL my Drs were telling me to take tylenol, until I ended up hospitalized for liver problems. (bilirubin jumped to 11,normal is under 2) Now I take ibuprofen. It was interesting to me that even the Dr. that was treating me in the hospital for my liver kept telling me to take tylenol, even when I asked, "Isn't that hard on your liver?"
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- January 2, 2013 at 5:33 pm
One other thing. I have to keep track of all the pain meds I take. When I was taking the full 8 pills a day, I took OTC pain meds at least 3 times a day most days. One caution, zelboraf and tylenol are both processed through the liver. ALL my Drs were telling me to take tylenol, until I ended up hospitalized for liver problems. (bilirubin jumped to 11,normal is under 2) Now I take ibuprofen. It was interesting to me that even the Dr. that was treating me in the hospital for my liver kept telling me to take tylenol, even when I asked, "Isn't that hard on your liver?"
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- December 30, 2012 at 4:40 pm
One of the most worrisome are what her dermatologist calls balls of infection just under the skin, she usually has up to 10 all over her body, especially painful on the soles of her feet. She can tell when they are coming up, they turn red and are very painful. She has a prescription cream she treats them with. At night she has hip,leg and foot pain where she cannot sleep. Mornings take about an hour to reach slow movement she can tolerate. Fatigue is really getting her down mentally. She is having a problem accepting she must conserve her strength for the most important things and let everything else go. She did take prednisone for severe facial rash at first, but is not on it now. I believe the cream does have prednisone. Thanks for your concern
-
- December 30, 2012 at 4:40 pm
One of the most worrisome are what her dermatologist calls balls of infection just under the skin, she usually has up to 10 all over her body, especially painful on the soles of her feet. She can tell when they are coming up, they turn red and are very painful. She has a prescription cream she treats them with. At night she has hip,leg and foot pain where she cannot sleep. Mornings take about an hour to reach slow movement she can tolerate. Fatigue is really getting her down mentally. She is having a problem accepting she must conserve her strength for the most important things and let everything else go. She did take prednisone for severe facial rash at first, but is not on it now. I believe the cream does have prednisone. Thanks for your concern
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- December 30, 2012 at 5:52 pm
Is she on a full dose? It sounds like she may need to reduce the dose if she’s having that bad of side effects. Many patients are on 2 or 3 pills twice a day instead of the full 4 twice a day. It helps reduce the side effects and still works. My husband has been on 3 twice a day for 14 months and is still responding. The side effects were bad with the full dose.-
- December 30, 2012 at 9:37 pm
When Tylenol doesn’t work, I sometimes take 4 mg. Dilaudid –I was originally prescribed oxycodone but it makes me itch terribly. Because of my inability to take Advil/Alleve for more than 1-2 doses, narcotics make it possible for me to function at times.
At first I was embarrassed to ask for the meds, feeling like my docs would think I was a drug addict/abuser, but they assured me that there is no reason for me to suffer pain needlessly.
I hope this helps a little–also, where is your sister being treated? Oncologists familiar/experienced with treating the side-effects of new drugs like Zel and Yervoy are crucial.
All the best,
Karen -
- December 30, 2012 at 9:37 pm
When Tylenol doesn’t work, I sometimes take 4 mg. Dilaudid –I was originally prescribed oxycodone but it makes me itch terribly. Because of my inability to take Advil/Alleve for more than 1-2 doses, narcotics make it possible for me to function at times.
At first I was embarrassed to ask for the meds, feeling like my docs would think I was a drug addict/abuser, but they assured me that there is no reason for me to suffer pain needlessly.
I hope this helps a little–also, where is your sister being treated? Oncologists familiar/experienced with treating the side-effects of new drugs like Zel and Yervoy are crucial.
All the best,
Karen -
- December 30, 2012 at 9:37 pm
When Tylenol doesn’t work, I sometimes take 4 mg. Dilaudid –I was originally prescribed oxycodone but it makes me itch terribly. Because of my inability to take Advil/Alleve for more than 1-2 doses, narcotics make it possible for me to function at times.
At first I was embarrassed to ask for the meds, feeling like my docs would think I was a drug addict/abuser, but they assured me that there is no reason for me to suffer pain needlessly.
I hope this helps a little–also, where is your sister being treated? Oncologists familiar/experienced with treating the side-effects of new drugs like Zel and Yervoy are crucial.
All the best,
Karen -
- December 31, 2012 at 2:54 am
Karen,
I’m one of the fortunate one’s been on Zel for 15 months. Have pain in bottom of feet partially due to super high arches, a lot of running in past, and Zel. At times felt like I was walking on diamond shaped stones barefooted. After trying many Drs. and many medicines sleeping pills that allowed me to lay on my back with legs on a couple pillows to relieve swelling of feet seemed to help the most.
Nurses from Zel might have better answers as they seem to hear everyone’s problems.
Wish you the best and Happy New Year! -
- December 31, 2012 at 2:54 am
Karen,
I’m one of the fortunate one’s been on Zel for 15 months. Have pain in bottom of feet partially due to super high arches, a lot of running in past, and Zel. At times felt like I was walking on diamond shaped stones barefooted. After trying many Drs. and many medicines sleeping pills that allowed me to lay on my back with legs on a couple pillows to relieve swelling of feet seemed to help the most.
Nurses from Zel might have better answers as they seem to hear everyone’s problems.
Wish you the best and Happy New Year! -
- December 31, 2012 at 2:54 am
Karen,
I’m one of the fortunate one’s been on Zel for 15 months. Have pain in bottom of feet partially due to super high arches, a lot of running in past, and Zel. At times felt like I was walking on diamond shaped stones barefooted. After trying many Drs. and many medicines sleeping pills that allowed me to lay on my back with legs on a couple pillows to relieve swelling of feet seemed to help the most.
Nurses from Zel might have better answers as they seem to hear everyone’s problems.
Wish you the best and Happy New Year!
-
- December 30, 2012 at 5:52 pm
Is she on a full dose? It sounds like she may need to reduce the dose if she’s having that bad of side effects. Many patients are on 2 or 3 pills twice a day instead of the full 4 twice a day. It helps reduce the side effects and still works. My husband has been on 3 twice a day for 14 months and is still responding. The side effects were bad with the full dose. -
- December 30, 2012 at 5:52 pm
Is she on a full dose? It sounds like she may need to reduce the dose if she’s having that bad of side effects. Many patients are on 2 or 3 pills twice a day instead of the full 4 twice a day. It helps reduce the side effects and still works. My husband has been on 3 twice a day for 14 months and is still responding. The side effects were bad with the full dose. -
- January 2, 2013 at 10:50 pm
I don't know, Dude,
I too used to be someone who totally resisted pain meds. For basically all of my life, I chose to suffer with headaches or whatever rather than taking any sort of pill. I wasn't trying to be stoic, nor was I particularly tough, I just always felt like it was healthier and someway better to not put weird things into my body. This cancer sh_t, however, is a different story. I'm currently on either some Advil everyday, or perhaps an Alleve or two. And hell, when I'm feeling wild and sassy, I even pop half a Persocet. The fact is, life is no longer what it was. I can't be that person who resists pain medication anymore unless I want to be in pain all the time. Beyond the fact that being in constant pain turns me into a dickhole, as most doctors and nurses will tell you, it's simply counter-productive to healing. I still don't think it's great to put chemicals into my body, but neither is radiation good, or chemotherapy, or any of the crud we use to fight off this disease. But the fact remains that we need it. My advice is to tell your sister that once she's NED, she can refuse to take anything she wants, but at this point, she needs to give herself a break and understand that alleviating her pain is part of her treatment and is something that will help her to eventually become healthy.
Best of luck!
Josh
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- January 2, 2013 at 10:50 pm
I don't know, Dude,
I too used to be someone who totally resisted pain meds. For basically all of my life, I chose to suffer with headaches or whatever rather than taking any sort of pill. I wasn't trying to be stoic, nor was I particularly tough, I just always felt like it was healthier and someway better to not put weird things into my body. This cancer sh_t, however, is a different story. I'm currently on either some Advil everyday, or perhaps an Alleve or two. And hell, when I'm feeling wild and sassy, I even pop half a Persocet. The fact is, life is no longer what it was. I can't be that person who resists pain medication anymore unless I want to be in pain all the time. Beyond the fact that being in constant pain turns me into a dickhole, as most doctors and nurses will tell you, it's simply counter-productive to healing. I still don't think it's great to put chemicals into my body, but neither is radiation good, or chemotherapy, or any of the crud we use to fight off this disease. But the fact remains that we need it. My advice is to tell your sister that once she's NED, she can refuse to take anything she wants, but at this point, she needs to give herself a break and understand that alleviating her pain is part of her treatment and is something that will help her to eventually become healthy.
Best of luck!
Josh
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- January 2, 2013 at 10:50 pm
I don't know, Dude,
I too used to be someone who totally resisted pain meds. For basically all of my life, I chose to suffer with headaches or whatever rather than taking any sort of pill. I wasn't trying to be stoic, nor was I particularly tough, I just always felt like it was healthier and someway better to not put weird things into my body. This cancer sh_t, however, is a different story. I'm currently on either some Advil everyday, or perhaps an Alleve or two. And hell, when I'm feeling wild and sassy, I even pop half a Persocet. The fact is, life is no longer what it was. I can't be that person who resists pain medication anymore unless I want to be in pain all the time. Beyond the fact that being in constant pain turns me into a dickhole, as most doctors and nurses will tell you, it's simply counter-productive to healing. I still don't think it's great to put chemicals into my body, but neither is radiation good, or chemotherapy, or any of the crud we use to fight off this disease. But the fact remains that we need it. My advice is to tell your sister that once she's NED, she can refuse to take anything she wants, but at this point, she needs to give herself a break and understand that alleviating her pain is part of her treatment and is something that will help her to eventually become healthy.
Best of luck!
Josh
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