› Forums › General Melanoma Community › QUESTION.. PLEASE HELP
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eturner.
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- August 27, 2014 at 1:05 pm
Hi, I have a question. My husband has stage 4 melanoma in spine, hips and pelvis and a few mets on skull as well and maybe two mets on his right lung. He is taking the Braf combo drug right now (5 months in) Before the braf drug he was in a huge amount of pain in hips and back area….. After starting the braf drug no pain (mets still in bones and lung but growth is at a standstill). About three weeeks ago he stared having pain in hip down left leg into calf and ankle, he has also started taking the morphine he was given before staring the braf drug ( during the past 5 months he has needed no pain medication). Even on the morphine when he goes to bed he can't get comfortable and cant get to sleep. On Friday he had a CT scan of hips and spine area…. It found no growth in bones….. WHAT COULD BE THE PAIN?? This Dr at UVA said they will now do an MRI on Friday!! What will the MRI be looking for?? Any advice or help would really be appreciated!!
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- August 27, 2014 at 1:44 pm
Hello-
I can only give you what my experience has been through my father in law.
Background:
Diagnosed January 2014 Stave IV
Had a tumor taken out of his side and a PET scan done that determine he had a heavy tumor burden with mets in the lungs, liver, spleen, pelvis, abdomen, left arm & spine
His tumor came back BRAF positive and he started the combo in February and also had radiation on his spine at that time due to the amount of pain he was in. Was on morphine for pain as well. He was wheelchair/bed bound from March-April. Combo seemed to have started working and he was able to walk with a walker. Jump ahead to June and his LDH spiked (from 200's to 700's) They started him on Ipi and kept him on 1/2 of the dose of Dbrafalin and off the tramafatin completely. He is now getting ready for his 4th Ipi dose in 2 weeks.
My point- the first time he had the leg pain they determined one of the tumors on the spine was causing it from pushing on some nerves and they did the radiation which seemed to help for a while. The second time he would get it when he stood up. When they did the MRI they found two fractures in the pelvis from where the disease has weakened his bones. They did radiation on the pelvis to try and eliviate some of the pain, but he currenlty is still in a wheelchair because of the amount of pain so I'm not sure what good it did. They have also switched his pain medication from Morphine to Delaudid, which has made his pain level tollerable and him more comfortable.
I hope you get answers soon.
SVS
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- August 27, 2014 at 1:44 pm
Hello-
I can only give you what my experience has been through my father in law.
Background:
Diagnosed January 2014 Stave IV
Had a tumor taken out of his side and a PET scan done that determine he had a heavy tumor burden with mets in the lungs, liver, spleen, pelvis, abdomen, left arm & spine
His tumor came back BRAF positive and he started the combo in February and also had radiation on his spine at that time due to the amount of pain he was in. Was on morphine for pain as well. He was wheelchair/bed bound from March-April. Combo seemed to have started working and he was able to walk with a walker. Jump ahead to June and his LDH spiked (from 200's to 700's) They started him on Ipi and kept him on 1/2 of the dose of Dbrafalin and off the tramafatin completely. He is now getting ready for his 4th Ipi dose in 2 weeks.
My point- the first time he had the leg pain they determined one of the tumors on the spine was causing it from pushing on some nerves and they did the radiation which seemed to help for a while. The second time he would get it when he stood up. When they did the MRI they found two fractures in the pelvis from where the disease has weakened his bones. They did radiation on the pelvis to try and eliviate some of the pain, but he currenlty is still in a wheelchair because of the amount of pain so I'm not sure what good it did. They have also switched his pain medication from Morphine to Delaudid, which has made his pain level tollerable and him more comfortable.
I hope you get answers soon.
SVS
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- August 27, 2014 at 1:44 pm
Hello-
I can only give you what my experience has been through my father in law.
Background:
Diagnosed January 2014 Stave IV
Had a tumor taken out of his side and a PET scan done that determine he had a heavy tumor burden with mets in the lungs, liver, spleen, pelvis, abdomen, left arm & spine
His tumor came back BRAF positive and he started the combo in February and also had radiation on his spine at that time due to the amount of pain he was in. Was on morphine for pain as well. He was wheelchair/bed bound from March-April. Combo seemed to have started working and he was able to walk with a walker. Jump ahead to June and his LDH spiked (from 200's to 700's) They started him on Ipi and kept him on 1/2 of the dose of Dbrafalin and off the tramafatin completely. He is now getting ready for his 4th Ipi dose in 2 weeks.
My point- the first time he had the leg pain they determined one of the tumors on the spine was causing it from pushing on some nerves and they did the radiation which seemed to help for a while. The second time he would get it when he stood up. When they did the MRI they found two fractures in the pelvis from where the disease has weakened his bones. They did radiation on the pelvis to try and eliviate some of the pain, but he currenlty is still in a wheelchair because of the amount of pain so I'm not sure what good it did. They have also switched his pain medication from Morphine to Delaudid, which has made his pain level tollerable and him more comfortable.
I hope you get answers soon.
SVS
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- August 27, 2014 at 2:28 pm
I also can only share my own experience. I was started on Zelbarof 1.5 years ago. I developed several months in, extreme arthritic side effects. I am no longer on this med, but on Tafinlar/Mekinist combo as of about 5 or 6 months ago. All of these extreme aches and pains disappeared about a month in to the new treatment. It may be worth asking his oncologist if this pain could possibly be side effects of his meds. Again, just my own experience.
Best of health always,
kali -
- August 27, 2014 at 2:28 pm
I also can only share my own experience. I was started on Zelbarof 1.5 years ago. I developed several months in, extreme arthritic side effects. I am no longer on this med, but on Tafinlar/Mekinist combo as of about 5 or 6 months ago. All of these extreme aches and pains disappeared about a month in to the new treatment. It may be worth asking his oncologist if this pain could possibly be side effects of his meds. Again, just my own experience.
Best of health always,
kali -
- August 27, 2014 at 2:28 pm
I also can only share my own experience. I was started on Zelbarof 1.5 years ago. I developed several months in, extreme arthritic side effects. I am no longer on this med, but on Tafinlar/Mekinist combo as of about 5 or 6 months ago. All of these extreme aches and pains disappeared about a month in to the new treatment. It may be worth asking his oncologist if this pain could possibly be side effects of his meds. Again, just my own experience.
Best of health always,
kali -
- August 28, 2014 at 12:42 am
Pretty much all I have has a bone involvement which is a couple dozen tumors. Most have fractures. Have they talked about giving him Zometa or Xgeva? These are medicines that strengthen the bones so fractures are not supposed to get worse and helps prevent spine compression and things. I just got my 7th Xgeva shot today. Before Xgeva they always said I had spine decompression and things. I think thanks to Xgeva my Aug 13 pet/ct said I have stable compression. I dunno if it would help but if you haven't already I would think for anyone with lots or even just 1 serious bone met they should be on Xgeva. I had a bad reaction to Zometa but it is a lot stronger than Xgeva and other people seem to take it fine so I dunno which would be better for your husband.
Artie
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- August 28, 2014 at 12:17 pm
Hi Artie, Yes he gets infusions of Zometa about every three month now. In the CT scan it showed some bone regrowth where the tumors have damaged them…. The tumors are still there just not growing at this time. He says the pain is like a knife stabbing him. I'm just worried!! Thanks for your response
Emily
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- August 28, 2014 at 12:17 pm
Hi Artie, Yes he gets infusions of Zometa about every three month now. In the CT scan it showed some bone regrowth where the tumors have damaged them…. The tumors are still there just not growing at this time. He says the pain is like a knife stabbing him. I'm just worried!! Thanks for your response
Emily
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- August 28, 2014 at 12:17 pm
Hi Artie, Yes he gets infusions of Zometa about every three month now. In the CT scan it showed some bone regrowth where the tumors have damaged them…. The tumors are still there just not growing at this time. He says the pain is like a knife stabbing him. I'm just worried!! Thanks for your response
Emily
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- August 28, 2014 at 3:22 pm
Ok. It actually might be a side affect of the Zometa causing the pain. Here's the list of side affects which shows skeletal pain in pretty much everyone if I read it right. http://www.rxlist.com/zometa-side-effects-drug-center.htm Granted that could just be the nature of needing the medicine.
However I know after almost every Xgeva shot I get pains in various bones but they go away after a few days. The way I understand it from the doc is the medicine is working to strengthen my bones causing the pain. Sometimes it is dull pain and sometimes a sharp stabbing pain like someone really strong is poking me from the inside out with their finger. But for me it is about the size of the end of a person's finger not the smaller point of a knife. So I'm not exactly sure about your husband's pain.
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- August 28, 2014 at 3:22 pm
Ok. It actually might be a side affect of the Zometa causing the pain. Here's the list of side affects which shows skeletal pain in pretty much everyone if I read it right. http://www.rxlist.com/zometa-side-effects-drug-center.htm Granted that could just be the nature of needing the medicine.
However I know after almost every Xgeva shot I get pains in various bones but they go away after a few days. The way I understand it from the doc is the medicine is working to strengthen my bones causing the pain. Sometimes it is dull pain and sometimes a sharp stabbing pain like someone really strong is poking me from the inside out with their finger. But for me it is about the size of the end of a person's finger not the smaller point of a knife. So I'm not exactly sure about your husband's pain.
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- August 28, 2014 at 3:22 pm
Ok. It actually might be a side affect of the Zometa causing the pain. Here's the list of side affects which shows skeletal pain in pretty much everyone if I read it right. http://www.rxlist.com/zometa-side-effects-drug-center.htm Granted that could just be the nature of needing the medicine.
However I know after almost every Xgeva shot I get pains in various bones but they go away after a few days. The way I understand it from the doc is the medicine is working to strengthen my bones causing the pain. Sometimes it is dull pain and sometimes a sharp stabbing pain like someone really strong is poking me from the inside out with their finger. But for me it is about the size of the end of a person's finger not the smaller point of a knife. So I'm not exactly sure about your husband's pain.
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- August 28, 2014 at 12:42 am
Pretty much all I have has a bone involvement which is a couple dozen tumors. Most have fractures. Have they talked about giving him Zometa or Xgeva? These are medicines that strengthen the bones so fractures are not supposed to get worse and helps prevent spine compression and things. I just got my 7th Xgeva shot today. Before Xgeva they always said I had spine decompression and things. I think thanks to Xgeva my Aug 13 pet/ct said I have stable compression. I dunno if it would help but if you haven't already I would think for anyone with lots or even just 1 serious bone met they should be on Xgeva. I had a bad reaction to Zometa but it is a lot stronger than Xgeva and other people seem to take it fine so I dunno which would be better for your husband.
Artie
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- August 28, 2014 at 12:42 am
Pretty much all I have has a bone involvement which is a couple dozen tumors. Most have fractures. Have they talked about giving him Zometa or Xgeva? These are medicines that strengthen the bones so fractures are not supposed to get worse and helps prevent spine compression and things. I just got my 7th Xgeva shot today. Before Xgeva they always said I had spine decompression and things. I think thanks to Xgeva my Aug 13 pet/ct said I have stable compression. I dunno if it would help but if you haven't already I would think for anyone with lots or even just 1 serious bone met they should be on Xgeva. I had a bad reaction to Zometa but it is a lot stronger than Xgeva and other people seem to take it fine so I dunno which would be better for your husband.
Artie
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