Stage 4 with bone mets. Do you have chronic pain? What medications do you take?

a_oaklee
a_oaklee Member Posts: 566 Member
edited November 2013 in Kidney Cancer #1

My husband was diagnosed at Stage 4 with mets to bones.  He had back surgery.  A titanium cage to replace a vertebrae, and some plates and screws along 8 other vertebrae.  Big surgery.  Also eventually had a nephrectomy.  Back surgery was March 2012 and nephrectomy January 2013.  The last scan showed no metabolic activity with the bone mets.  He has another scan due in December.  I would like to know about other people with bone mets.  Does it hurt?  Do you take medicine for pain?  My husband takes oxycontin and oxycodone.  The pain is relentless.  We wonder if the pain is from the cancer or from the back surgery?  Do you have any suggestions for pain management?  Thankyou.

Also, did you see a orthopedic oncologist?  We have not.

Comments

  • Jan4you
    Jan4you Member Posts: 1,330 Member
    #2
    I cannot help you about your

    I cannot help you about your questions, but I do want to say how sorry I am for ALL he (and you) have been through=a lot!! Just the back surgery alone can cause such lasting pain. Not sure if bone mets hurts, but I think it may. Others here may know better. Never heard of an orthopedic oncologist.

    But I have seen how alternative methods can offer some pain relief. An accupuncturest, a chiropractor that uses, B.E.S.T (Bio-Energetic-synchronizatiom-technique). It is simple and NOT the "bone-cracking" kind of chiropractic treatment. Some use Lazer light therapy for any area that has been cut from surgery (or injury). It helps to rejuvenate the nerve endings that have been cut start to communicate again, kinda like photosenthesis in plants. No MD will know about this, but alternative providers know so many other methods. A good chiropractor will let you know their limitations or if they can help at all. I have an amazing healer who saved me more than once.

    Then there are pain managment clinics. The scary part of taking RX opiates is the risk of physical addiction, yet one needs pain relief. It can be a vicious circle.

    Hope you get more definitive answers from others here. Your hubby will be in my thoughts and prayers.

    Warmly, Jan

  • foxhd
    foxhd Member Posts: 3,181 Member
    #3
    Jan4you said:

    I cannot help you about your

    I cannot help you about your questions, but I do want to say how sorry I am for ALL he (and you) have been through=a lot!! Just the back surgery alone can cause such lasting pain. Not sure if bone mets hurts, but I think it may. Others here may know better. Never heard of an orthopedic oncologist.

    But I have seen how alternative methods can offer some pain relief. An accupuncturest, a chiropractor that uses, B.E.S.T (Bio-Energetic-synchronizatiom-technique). It is simple and NOT the "bone-cracking" kind of chiropractic treatment. Some use Lazer light therapy for any area that has been cut from surgery (or injury). It helps to rejuvenate the nerve endings that have been cut start to communicate again, kinda like photosenthesis in plants. No MD will know about this, but alternative providers know so many other methods. A good chiropractor will let you know their limitations or if they can help at all. I have an amazing healer who saved me more than once.

    Then there are pain managment clinics. The scary part of taking RX opiates is the risk of physical addiction, yet one needs pain relief. It can be a vicious circle.

    Hope you get more definitive answers from others here. Your hubby will be in my thoughts and prayers.

    Warmly, Jan

    bone mets

    Boy, sorry for the problems. I've had several bone mets. And I still do. Pelvis, spine, and ribs. When I was on the MDX-1106 trial drug, my pelvic and a couple thoracic mets went away. I had difficulty walking and I had felt like I was hung from a wall by a spear through my chest and back. They healed but had been very painful. I was taking a fair amount of percocets just to get around the house. That was 2 years back. I've had several in my ribs and they caused spontaneous fractures. Sneezes, deep breaths and coughs made me see stars. Sometimes thinking that I would pass out. I had radiation to a couple in the spine and ribs. The pain has gone from these. 2 or 3 times a rib fracture began to heal only to break again bringing the pain with it. Fortunately I have been pain free now for many months. I await a scan next week to find out my met status. But no doubt. They can hurt alot. Percocet has worked for me when needed. Addiction has never been an issue. Script was for 2 or 3 a day. My doctor told me not to worry about it and take them as needed. I guess metastatic cancer is a pretty good reason to need them.

    One thing I do not want is surgery to remove my vertebrae and titanium hardware to stabilize my spine. I see no way of that not causing long term pain. That would become a quality of life issue for me. I would persue more radiation and find a new trial drug if possible. Good luck.

  • srbelle1
    srbelle1 Member Posts: 123
    #4
    foxhd said:

    bone mets

    Boy, sorry for the problems. I've had several bone mets. And I still do. Pelvis, spine, and ribs. When I was on the MDX-1106 trial drug, my pelvic and a couple thoracic mets went away. I had difficulty walking and I had felt like I was hung from a wall by a spear through my chest and back. They healed but had been very painful. I was taking a fair amount of percocets just to get around the house. That was 2 years back. I've had several in my ribs and they caused spontaneous fractures. Sneezes, deep breaths and coughs made me see stars. Sometimes thinking that I would pass out. I had radiation to a couple in the spine and ribs. The pain has gone from these. 2 or 3 times a rib fracture began to heal only to break again bringing the pain with it. Fortunately I have been pain free now for many months. I await a scan next week to find out my met status. But no doubt. They can hurt alot. Percocet has worked for me when needed. Addiction has never been an issue. Script was for 2 or 3 a day. My doctor told me not to worry about it and take them as needed. I guess metastatic cancer is a pretty good reason to need them.

    One thing I do not want is surgery to remove my vertebrae and titanium hardware to stabilize my spine. I see no way of that not causing long term pain. That would become a quality of life issue for me. I would persue more radiation and find a new trial drug if possible. Good luck.

    fox:
    you are right about the

    fox:

    you are right about the pain and recovery from back surgery and titanium but your perspective comes after those treatments which sounded horrific.

    as for addiction, the pain can be so debilitating that addiction is not a major consideration; in my husband's case, the high level of narcotics landed him in the hospital for 16 days with intestinal obstruction. 

    the pain does get better and rotating pain meds is very helpful.

    wishing you the best with your follow-up tests

    sarah

  • a_oaklee
    a_oaklee Member Posts: 566 Member
    #5
    Sarah...rotate pain meds?

    Hi Sarah,

    Could you please tell me more precisely what you mean by "rotate pain meds"?

    My husbands only side effect of the pain meds is that he is tired, BUT he still has lots of pain.  He doesn't want to be passed out in order to not feel pain.  I'm sure you understand the experience. 

     

  • a_oaklee
    a_oaklee Member Posts: 566 Member
    #6
    Jan and Fox

    Jan:  Thankyou for giving me some sugestions regarding alternative treatments.  It actually made me think of a TENS unit and wondering if that would be helpful. 

    Fox:  I really appreciate that you wrote with your first hand experience.  I appreciate knowing about another pain medication that you think was helpful.  I'm so happy for you that you don't have the need for the pain meds currently.  I certainly hope that it will continue to be the case.  In your professional experience, are there other methods to help a person who has had back surgery (independent of the cancer diagnosis)?  Do you think a TENS unit would be helpful, or other physical therapy?  I wonder if we should see a orthopedic or neuro doc? 

    I wanted to let you know that the back surgery was an emergency.  After the preop CT/PET scan we got a call at llpm and we were told to immediately come to the hospital.  It was a very strange phone call.  Told do not take time to do anything, just get in the car and get here, don't hit bumps driving.  The vertebrae was "mush", and they said its miraculous that he didn't sever his spinal cord.  So the surgery was for quality of life, to prevent paralysis.  Despite the chronic back pain, my husband is  happy to be walking around!  We would most definitely make the same decision again. 

     

  • Jan4you
    Jan4you Member Posts: 1,330 Member
    #7
    a_oaklee said:

    Jan and Fox

    Jan:  Thankyou for giving me some sugestions regarding alternative treatments.  It actually made me think of a TENS unit and wondering if that would be helpful. 

    Fox:  I really appreciate that you wrote with your first hand experience.  I appreciate knowing about another pain medication that you think was helpful.  I'm so happy for you that you don't have the need for the pain meds currently.  I certainly hope that it will continue to be the case.  In your professional experience, are there other methods to help a person who has had back surgery (independent of the cancer diagnosis)?  Do you think a TENS unit would be helpful, or other physical therapy?  I wonder if we should see a orthopedic or neuro doc? 

    I wanted to let you know that the back surgery was an emergency.  After the preop CT/PET scan we got a call at llpm and we were told to immediately come to the hospital.  It was a very strange phone call.  Told do not take time to do anything, just get in the car and get here, don't hit bumps driving.  The vertebrae was "mush", and they said its miraculous that he didn't sever his spinal cord.  So the surgery was for quality of life, to prevent paralysis.  Despite the chronic back pain, my husband is  happy to be walking around!  We would most definitely make the same decision again. 

     

    Poor guy, I DO feel for him.
    Poor guy, I DO feel for him. Since I worked in addiction AND have had years of back pain myself, I come at this chronic pain issue from experience. This Chiropractor (BEST Technique) uses a FINGER to conduct this therapy along the nerve paths. He unblocks the pinched nerves, assists in the healing process and has much training, even in Neurological issues. He never uses any intrusive movements. Not sure about your husband's case as his spine is very fragile.

    I try not to take narcotics because of the side effects, and potential of dependency, but have used them in past to sleep/rest. Some folks, I have learned, start to take Narcotics/opiates closer together in time, than prescribed. Then to make them when they want to "check out" and FEEL better, starting them on the road of abuse.

    Eventually most meds reach their efficacy and don't work as before. Pain then becomes the "trigger" to cont to take more and more. It becomes tricky. Pain, though felt as real, is more of the "memory" stored which triggers need for another pill, then another etc.

    I have taken anti-seizure meds, and combinations of NSAIDs with muscle relaxants. You have to protect your stomach with NSAIDS. Ice, water therapy, TENS machine, acupuncture are other ways to ease the pain more naturally.

    My heart breaks for those who are in pain. And most docs want to feel better by whipping out their RX pads and not seek out alternatives to compliment the RX.

    Your husband is lucky to have you on his side. Best to you both!

    Jan
  • foxhd
    foxhd Member Posts: 3,181 Member
    #8
    a_oaklee said:

    Jan and Fox

    Jan:  Thankyou for giving me some sugestions regarding alternative treatments.  It actually made me think of a TENS unit and wondering if that would be helpful. 

    Fox:  I really appreciate that you wrote with your first hand experience.  I appreciate knowing about another pain medication that you think was helpful.  I'm so happy for you that you don't have the need for the pain meds currently.  I certainly hope that it will continue to be the case.  In your professional experience, are there other methods to help a person who has had back surgery (independent of the cancer diagnosis)?  Do you think a TENS unit would be helpful, or other physical therapy?  I wonder if we should see a orthopedic or neuro doc? 

    I wanted to let you know that the back surgery was an emergency.  After the preop CT/PET scan we got a call at llpm and we were told to immediately come to the hospital.  It was a very strange phone call.  Told do not take time to do anything, just get in the car and get here, don't hit bumps driving.  The vertebrae was "mush", and they said its miraculous that he didn't sever his spinal cord.  So the surgery was for quality of life, to prevent paralysis.  Despite the chronic back pain, my husband is  happy to be walking around!  We would most definitely make the same decision again. 

     

    tens or therapy

    I don't know if you know. I'm a physical therapist. So my perspective is based on experience of dealing with pain personally and profressionally. One grows up learning to crawl and walk and so forth. All normal behavior and function. But after 30-40-50 years of "what is normal" we run into a major anatomical or physiological hurdle. Chop us up. destroy normal bones, muscle, organs and tissue. The body knows that things are not right. The response is to give us warning and protection. Things hurt. And can hurt alot. We are in self preservation mode. But with time and experience with the changes that we go through, the new you becomes the new normal. That does take time. We can influence this. Practice how we move. How we lift, walk and do anything. Repetition adds up. It becomes second nature. Which becomes the new "Normal." There is no shortcut. Drugs help. Tens can help. If it is set up correctly. It will allow for activity which adds up to your new you. A good therapist can help you work on biomechanics and motor skills which incorporate the new changes you are experiencing. You can never be the same. You will be somewhat different. Doesn't have to be bad. Just different. An ortho or neuro will know they can't help. Good ones will refer to a physical therapist anyway. Consider it.

  • srbelle1
    srbelle1 Member Posts: 123
    #9
    a_oaklee said:

    Sarah...rotate pain meds?

    Hi Sarah,

    Could you please tell me more precisely what you mean by "rotate pain meds"?

    My husbands only side effect of the pain meds is that he is tired, BUT he still has lots of pain.  He doesn't want to be passed out in order to not feel pain.  I'm sure you understand the experience. 

     

    by rotating pain meds, he

    by rotating pain meds, he will take neurontin (really helps with nerve pain), tramadol and Tylenol. If back is particularly painful or like, last week when he had to have several scans, he will take norco and he has OxyContin and morphine which he has used very sparingly if he has really bad pain but hasn't had morphine in the last month.

    your husband's surgery was much more extensive than mine and my husband has a 14" scar; we were at the onc's office today and he reiterated that when possible, surgery is the BEST way of dealing with mets.

    sarah

  • a_oaklee
    a_oaklee Member Posts: 566 Member
    #10
    foxhd said:

    tens or therapy

    I don't know if you know. I'm a physical therapist. So my perspective is based on experience of dealing with pain personally and profressionally. One grows up learning to crawl and walk and so forth. All normal behavior and function. But after 30-40-50 years of "what is normal" we run into a major anatomical or physiological hurdle. Chop us up. destroy normal bones, muscle, organs and tissue. The body knows that things are not right. The response is to give us warning and protection. Things hurt. And can hurt alot. We are in self preservation mode. But with time and experience with the changes that we go through, the new you becomes the new normal. That does take time. We can influence this. Practice how we move. How we lift, walk and do anything. Repetition adds up. It becomes second nature. Which becomes the new "Normal." There is no shortcut. Drugs help. Tens can help. If it is set up correctly. It will allow for activity which adds up to your new you. A good therapist can help you work on biomechanics and motor skills which incorporate the new changes you are experiencing. You can never be the same. You will be somewhat different. Doesn't have to be bad. Just different. An ortho or neuro will know they can't help. Good ones will refer to a physical therapist anyway. Consider it.

    Yes, I knew your background was in physical therapy.  I appreciate the information and the advice that physical therapy may be of benefit.  At our next appointment I will ask about it.  Thankyou.

  • a_oaklee
    a_oaklee Member Posts: 566 Member
    #11
    Jan4you said:

    Poor guy, I DO feel for him.
    Poor guy, I DO feel for him. Since I worked in addiction AND have had years of back pain myself, I come at this chronic pain issue from experience. This Chiropractor (BEST Technique) uses a FINGER to conduct this therapy along the nerve paths. He unblocks the pinched nerves, assists in the healing process and has much training, even in Neurological issues. He never uses any intrusive movements. Not sure about your husband's case as his spine is very fragile.

    I try not to take narcotics because of the side effects, and potential of dependency, but have used them in past to sleep/rest. Some folks, I have learned, start to take Narcotics/opiates closer together in time, than prescribed. Then to make them when they want to "check out" and FEEL better, starting them on the road of abuse.

    Eventually most meds reach their efficacy and don't work as before. Pain then becomes the "trigger" to cont to take more and more. It becomes tricky. Pain, though felt as real, is more of the "memory" stored which triggers need for another pill, then another etc.

    I have taken anti-seizure meds, and combinations of NSAIDs with muscle relaxants. You have to protect your stomach with NSAIDS. Ice, water therapy, TENS machine, acupuncture are other ways to ease the pain more naturally.

    My heart breaks for those who are in pain. And most docs want to feel better by whipping out their RX pads and not seek out alternatives to compliment the RX.

    Your husband is lucky to have you on his side. Best to you both!

    Jan

    My husband takes a pill that works for 12 hours.  Time released?  So, two in 24 hours.  The only time he takes an Oxycodone is if something he has done has severely increased his pain level.  It's rare.  Maybe 2 to 4 times in a month.  I don't think he is getting "addicted" in the sense that you describe, because the doses haven't increased, nor has the frequency.  I appreciate the information that you have provided. 

    I've just been trying to figure out if it is cancer pain or surgical pain and if anybody else in a similar situation is feeling the same and what they do to manage it.  I've had great responses to my question.  This site is a wonderful place to compare notes with others and get information that a doc might or might not share.

    Srbelle:  Thanks for explaining the rotating medications and what they are.  I'm going to check into that too at our next dr visit. 

     

  • TillieSOK
    TillieSOK Member Posts: 252
    #12
    srbelle1 said:

    fox:
    you are right about the

    fox:

    you are right about the pain and recovery from back surgery and titanium but your perspective comes after those treatments which sounded horrific.

    as for addiction, the pain can be so debilitating that addiction is not a major consideration; in my husband's case, the high level of narcotics landed him in the hospital for 16 days with intestinal obstruction. 

    the pain does get better and rotating pain meds is very helpful.

    wishing you the best with your follow-up tests

    sarah

    Yeah...heavy intake of

    Yeah...heavy intake of narcotics should come with a side packet of laxatives!  Also , tell him to drink LOTS of water...keeps stuff moving in there.

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