My brother was diagnosed last April after months of back pain. At diagnosis he already had multiple fractures and incapacitating bone pain. He has been receiving Velcade / dex treatment and is having a bone marrow biopsy done today with hopes that he will be having stem cell transplant soon. He has had one kyphoplasty but has been rejected for more because of the state of his bones and the location being too close to his lungs.
He has really done well with the chemo with no unusual side effects and good results. He has been living in a recliner and taking large doses of different pain killers. The severe constipation made him give them up as even a reduced dose didn't help. The dex helps, but as you know has a huge downside. He has tried everything for the constipation. He is only 46 years old and has gone from a strapping young man to being stooped over and 4 inches shorter.
Now to my question - He wants to give up and go on hospice because he can't face living in such pain even if he does get a remission. I have searched everywhere and I never have found mention of other patients who have this kind of pain. Is there any hope that the pain might lessen after stem cell?
Thank you in advance
Forums
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alevin2089 - Name: arlene
- Who do you know with myeloma?: brother
- When were you/they diagnosed?: 4/2011
- Age at diagnosis: 46
Re: Extreme bone pain
That sounds like a very difficult situation. Fractures and the associated pain are one the most difficult issues to deal with in myeloma.
It is great to hear that he has responded well to therapy and with few side effects. Obviously, his pain is his primary issue currently. Without knowing the details of his spinal issues (bone disease), it is difficult to comment directly. That said, myeloma is a disease that requires a multidisciplinary approach to treatment:
From the story that you have told, the first things that come to mind are
It is great to hear that he has responded well to therapy and with few side effects. Obviously, his pain is his primary issue currently. Without knowing the details of his spinal issues (bone disease), it is difficult to comment directly. That said, myeloma is a disease that requires a multidisciplinary approach to treatment:
- Your oncologist to coordinate therapy and the treatment goals
- A neurosurgeon in the case of vertebral / spinal disease (as in your brother's case), orthopedic surgeons for fractured hips, arms, and legs
- A pain management physician to assist with the extreme pain resulting from the fractures (or in some cases the pain induced by our therapies)
- In some cases nephrologist (kidney doctors), transplant physicians and, of course, all of nursing care linked to those different specialties.
From the story that you have told, the first things that come to mind are
- Ask for a referral to a pain management specialist (usually narcotics work well and the constipation can be managed with good bowel regimen, there are patches that offer local pain relief, etc);
- A second opinion regarding the options for repairing your brother's vertebral fractures (neurosurgeon) - I am unsure of the significance of the "too close to his lungs" comment
- Depending on the amount of disease at the region of the fractures (i.e. if there was a plasmacytoma - visual mass of myeloma cells), radiation to that area may alleviate some of the pain even if the mass is reduced secondary to therapy
- Ask for a referral to a center of excellence for multiple myeloma where these multidisciplinary teams have more experience dealing with myeloma specific complications.
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Dr. Ken Shain - Name: Ken Shain, M.D., Ph.D.
Beacon Medical Advisor
Re: Extreme bone pain
I agree with Dr. Shain. Find a pain management specialist! My husband was in uncontrollable pain and it was very quickly becoming almost debilitating. We made so many trips to the ER, I thought they might give us a Frequent Visitor card! (This was a man that had continued to work, even at age 72, and could play 54 holes of golf in one day.)
He had vertebroplasty (which was of no help). He was checked by a neurologist and was fitted for a custom back brace. Again, no help. Celebrex was prescribed, and that only caused great stomach distress. Cymbalta was prescribed, and that did nothing but cause depression.
The only thing that seemed to appease the pain was the dex, on his chemo days, or Medrol packs when it got to the point that he could no longer stand it.
Finally, he was referred to a pain management specialist. He was given two steroid injections, a couple of weeks apart, and then a lumbar denervation (nerve burning) in February. This should last from 12 to 18 months. He takes 15 mg of MS Contin (a morphine derivative) morning and night and then has Dilaudid (4 mg) for "breakthrough" pain. He still has some pain – primarily in his legs, but nothing like we experienced in the beginning.
As for the constipation, get on a regimen of Miralax, morning and night.
Good luck!
He had vertebroplasty (which was of no help). He was checked by a neurologist and was fitted for a custom back brace. Again, no help. Celebrex was prescribed, and that only caused great stomach distress. Cymbalta was prescribed, and that did nothing but cause depression.
The only thing that seemed to appease the pain was the dex, on his chemo days, or Medrol packs when it got to the point that he could no longer stand it.
Finally, he was referred to a pain management specialist. He was given two steroid injections, a couple of weeks apart, and then a lumbar denervation (nerve burning) in February. This should last from 12 to 18 months. He takes 15 mg of MS Contin (a morphine derivative) morning and night and then has Dilaudid (4 mg) for "breakthrough" pain. He still has some pain – primarily in his legs, but nothing like we experienced in the beginning.
As for the constipation, get on a regimen of Miralax, morning and night.
Good luck!
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Sarah - Name: Sarah
- Who do you know with myeloma?: Husband
- When were you/they diagnosed?: October 7, 2010
- Age at diagnosis: 72
Re: extreme bone pain
Good morning and Merry Christmas ! I have a question for those with multiple myeloma, as my father has had it for almost 3 years. He's been taking morphine for probably 1 1/2 years, which I didn't agree with, as I felt like that early in the game, his pain couldn't have been strong enough to require morphine He has had problems with pain medications in the past and because the doctors were prescribing his pain medications (numerous) every time he went to the Dr. (he complains, therefore, they prescribe). He was so over-medicating himself, he was constantly falling to the point of severly injuring himself, and was not even able to verbally communicate. Therefore, I had to step in and take control of his medications. I also had to meet with his Dr. and let him know that, because my father has a problem with pain medications, he needs to stop prescribing them every time he complains. Right now, I only give him one morphine pill at night before he goes to bed. I'm just wondering if anyone else out there has been taking morphine, and if so, at what point after your diagnosis did you begin to take it ?
Re: Extreme bone pain
Hi Rwilli,
I am sorry to hear about your Dad's extreme bone pain. Believe it, that pain can be just excruciating! My vertebral fractures in the summer of 2009 kept me in bed for several weeks. Besides Tylenol 3 (which contains codeine), I took a prescription muscle relaxant called Flexeril (cyclobenzaprine). I didn't use that much of the Tylenol (acetaminophen / paracetamol), since it does have side effects that I did not like. Took Flexeril for over a year though. It helped a lot.
I will never forget those months of getting about with the help of a walker. A really bad ordeal.
We purchased an electric seat heater that is meant to put in cars in winter. You put it over a chair, the back and seat of the chair. That was soothing . Also, although I did not use a back brace, the kind you can get thru a drugstore, I know people who have used them and it seems to help.
The continued treatment of bisphosphonates for my bones dating back from the injuries, has no doubt helped in my healing. This treatment is prescribed by my oncologist. I still have bone damage that shows up on x-rays, but it is a stable condition. Still have bone pain too, but it is nothing like how bad it was two years ago. So I guess you can at least partially heal up from all of this trauma, over time.
Best of luck to your Dad. My doctors helped me to sort this out. Perhaps you could get back to them about some of these treatments .
I am sorry to hear about your Dad's extreme bone pain. Believe it, that pain can be just excruciating! My vertebral fractures in the summer of 2009 kept me in bed for several weeks. Besides Tylenol 3 (which contains codeine), I took a prescription muscle relaxant called Flexeril (cyclobenzaprine). I didn't use that much of the Tylenol (acetaminophen / paracetamol), since it does have side effects that I did not like. Took Flexeril for over a year though. It helped a lot.
I will never forget those months of getting about with the help of a walker. A really bad ordeal.
We purchased an electric seat heater that is meant to put in cars in winter. You put it over a chair, the back and seat of the chair. That was soothing . Also, although I did not use a back brace, the kind you can get thru a drugstore, I know people who have used them and it seems to help.
The continued treatment of bisphosphonates for my bones dating back from the injuries, has no doubt helped in my healing. This treatment is prescribed by my oncologist. I still have bone damage that shows up on x-rays, but it is a stable condition. Still have bone pain too, but it is nothing like how bad it was two years ago. So I guess you can at least partially heal up from all of this trauma, over time.
Best of luck to your Dad. My doctors helped me to sort this out. Perhaps you could get back to them about some of these treatments .
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Nancy Shamanna - Name: Nancy Shamanna
- Who do you know with myeloma?: Self and others too
- When were you/they diagnosed?: July 2009
Re: Extreme bone pain
My partner has been taking oxycontin (morphine) and Endone for about the last 10 years to manage pain. He takes them in the morning and at night and I he must have high tolerance as it doesn't seem to affect him but it lessens the pain. If he has to do drive a long way or walk a bit further he might take something during the day as well when he gets in too much pain but that's occasional.
To combat constipation he uses a laxative. I guess if he's not in so much pain then life is more tolerable and better he be addicted to the painkillers and be able to live as normal a life as possible than be constantly suffering.
To combat constipation he uses a laxative. I guess if he's not in so much pain then life is more tolerable and better he be addicted to the painkillers and be able to live as normal a life as possible than be constantly suffering.
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laetetia - Who do you know with myeloma?: De facto
- When were you/they diagnosed?: 2001
- Age at diagnosis: 53
Re: Extreme bone pain
I am having the same problem with my father. He is now taking Endone (oxycodone) as well as oxytocin and still has really bad pain. He has so much pain he has trouble sleeping. Like yesterday he was in so much pain. I mean Endone is a very strong painkiller.
I will try a pain management specialist. Thank you.
I will try a pain management specialist. Thank you.
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js879
Re: Extreme bone pain
OK, so first I went to a orthopedic doctor. He said he couldn't do anything, go to a neurosurgeon for my father. Then we went to a neurosurgeon. He said he can't do anything, go to a pain management specialist, and then he said he couldn't do anything either.
My dad has extreme pain in back. He has fractures, experiences burning sensation inside, still uses walker to walk ever since the cancer came. With the grace of God he can walk with walker, but I don't know what to do. It feels like the healthcare system has failed us.
I'm going to talk to the people that will do his transplant and see if the doctors at that hospital can do something, but it's 2016. How long can one tolerate pain?
My dad has extreme pain in back. He has fractures, experiences burning sensation inside, still uses walker to walk ever since the cancer came. With the grace of God he can walk with walker, but I don't know what to do. It feels like the healthcare system has failed us.
I'm going to talk to the people that will do his transplant and see if the doctors at that hospital can do something, but it's 2016. How long can one tolerate pain?
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js879
Re: Extreme bone pain
js,
What country do you live in?
What country do you live in?
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Little Monkey - Name: Little Monkey
- Who do you know with myeloma?: Father-stage 1 multiple myeloma
- When were you/they diagnosed?: March/April of 2015
Re: Extreme bone pain
Nerve pain or bone pain? I would find the cause using a doctor.
If it is quick, sharp, stabbing pain in a local area, it might be fractures in the bone or nerve pinching (usually goes away after a short time if you stop moving the pain area).
If it's pain over a larger area, that increase and deceases from time to time, it could be bone pain (inflammation, spine compression etc.)
Pain killers help but really only mask the real problem, so I would recommend advanced medical procedures. Ask your doctor about these:
Kyphoplasty for nerves and bones
Radiation for bones
Cortisone shots/Injection for nerves and bones
Epidural Injection for nerves and bones
Some simpler techniques to manage bone pain are listed at
https://myelomabeacon.org/forum/pain-management-bone-pain-t3924.html#p43247
If it is quick, sharp, stabbing pain in a local area, it might be fractures in the bone or nerve pinching (usually goes away after a short time if you stop moving the pain area).
If it's pain over a larger area, that increase and deceases from time to time, it could be bone pain (inflammation, spine compression etc.)
Pain killers help but really only mask the real problem, so I would recommend advanced medical procedures. Ask your doctor about these:
Kyphoplasty for nerves and bones
Radiation for bones
Cortisone shots/Injection for nerves and bones
Epidural Injection for nerves and bones
Some simpler techniques to manage bone pain are listed at
https://myelomabeacon.org/forum/pain-management-bone-pain-t3924.html#p43247
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Bob_D - Name: Bob_D
- Who do you know with myeloma?: me
- When were you/they diagnosed?: March 2015
- Age at diagnosis: 59
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