Hi.
I was wondering if bone pain is from the tumor itself, or is it due to the destruction of bone from the tumors?
Also, does anyone still get bone pain after the tumor is gone?
I just finished up radiation for a pelvic tumor and want to know what to expect.
Thanks
Forums
Re: Bone pain - from the tumor, or from bone destruction?
You have a really interesting question. It could be from both or from one or the other.
The radiation that you are having is to destroy the tumor so that it doesn't cause anymore destruction of the bone. Hopefully the pain that you've been experiencing will improve with the radiation treatments. I know that my bone pain from a lesion in my lower leg was successfully helped with radiation. I only get pain in that area occasionally when I've overdone things like walking too much. But, the pain that I get is more of an aching, low level pain that resolves with Tylenol.
All the best,
Nancy in Phila
The radiation that you are having is to destroy the tumor so that it doesn't cause anymore destruction of the bone. Hopefully the pain that you've been experiencing will improve with the radiation treatments. I know that my bone pain from a lesion in my lower leg was successfully helped with radiation. I only get pain in that area occasionally when I've overdone things like walking too much. But, the pain that I get is more of an aching, low level pain that resolves with Tylenol.
All the best,
Nancy in Phila
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NStewart - Name: Nancy Stewart
- Who do you know with myeloma?: self
- When were you/they diagnosed?: 3/08
- Age at diagnosis: 60
Re: Bone pain - from the tumor, or from bone destruction?
Thank you Nancy. I had a lot of pain after playing soccer and running before diagnosis but since diagnosis I was told to not stress the bone as it is compromised. Finally, after months of being sedentary, I attempted to bowl on Friday and unfortunately am in pain. Familiar pain from when I had been more active but not exactly the same. I am just hoping to one day be able to resume the activities I once enjoyed.
Nancy, were you advised to limit your activities?
Thanks again,
Denise
Nancy, were you advised to limit your activities?
Thanks again,
Denise
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nymom - Who do you know with myeloma?: ME
- When were you/they diagnosed?: 12/2014
- Age at diagnosis: 43
Re: Bone pain - from the tumor, or from bone destruction?
Hi nymom,
Unfortunately, bone pain is one of the predominant symptoms at the time of diagnosis of multiple myeloma, and is seen in 60-65% of patients. It occurs particularly in the middle or lower back, ribs, or hips. As you have already noticed, the pain worsens with activity and movement, and improves somewhat with rest and at night.
The severity of the pain depends on the extent of the disease and the rapidity with which the myeloma develops.
Myeloma is a cancer involving the bone marrow plasma cells that grow uncontrollably and disrupt the normal remodeling process (breaking down and rebuilding) of bones. As such, the cells (osteoclasts) that break down the bones become more active than the cells that rebuild the bones (osteoblasts).
This imbalance leads to weakened bones and lytic, or punched out, lesions, fractures, stretching of the thick membrane that covers the bones (periosteum), stimulation of nerves within the periosteum and adjacent to the bones, increased inflammation and swelling, and muscle spasm / cramps – all of which lead to pain.
With treatment, the bone pain should subside. I wish you all the best and hope that, as you begin to respond to therapy, you are able to resume your activities. It is recommended that patients with myeloma bone disease be treated with bisphophonates (Zometa or Aredia), calcium, and vitamin D for restoring bone health and to reduce pain and risk of fractures in myeloma.
Unfortunately, bone pain is one of the predominant symptoms at the time of diagnosis of multiple myeloma, and is seen in 60-65% of patients. It occurs particularly in the middle or lower back, ribs, or hips. As you have already noticed, the pain worsens with activity and movement, and improves somewhat with rest and at night.
The severity of the pain depends on the extent of the disease and the rapidity with which the myeloma develops.
Myeloma is a cancer involving the bone marrow plasma cells that grow uncontrollably and disrupt the normal remodeling process (breaking down and rebuilding) of bones. As such, the cells (osteoclasts) that break down the bones become more active than the cells that rebuild the bones (osteoblasts).
This imbalance leads to weakened bones and lytic, or punched out, lesions, fractures, stretching of the thick membrane that covers the bones (periosteum), stimulation of nerves within the periosteum and adjacent to the bones, increased inflammation and swelling, and muscle spasm / cramps – all of which lead to pain.
With treatment, the bone pain should subside. I wish you all the best and hope that, as you begin to respond to therapy, you are able to resume your activities. It is recommended that patients with myeloma bone disease be treated with bisphophonates (Zometa or Aredia), calcium, and vitamin D for restoring bone health and to reduce pain and risk of fractures in myeloma.
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Dr. Prashant Kapoor - Name: Prashant Kapoor, M.D.
Beacon Medical Advisor
Re: Bone pain - from the tumor, or from bone destruction?
Denise-
The only things that I've officially been told about activity is to let my oncologist know if I experience bone pain. As a physical therapist, I know that it's not good to put a lot of stress on bones that have lesions in them. This means to limit activities that place increased impact on the bones, unequal stress on the bones, and rotational stress on the bones. So, things like impact sports, running, free weight training with heavy weights, weight machines with heavy weights, resistance bands, etc. should be done carefully, or not at all. So, I walk, do water aerobics, and use an exercycle. When I do any kind of weight training, I use the weight of my own body in a closed chain position for resistance. Closed chain means that any exercise that you are doing to strengthen your arms means that your hand is planted on a surface or your foot is planted for leg strengthening.
I am always conscious of how I feel while I am exercising / active and how I feel afterwards. If something starts to bother me while I am doing it, I stop doing it. If I become fatigued while I am doing something, I stop and rest for a while and then continue. If I become overly fatigued after exercising or doing an activity, I know that I've done too much and that I need to back off the next time. You don't want to stop everything, but you need to know what your limits are and respect them.
We had a person come to our support group meeting this past Saturday who developed the Cancer Fatigue program at my cancer center and who sees all of the people who have allogeneic transplants there. She reminded people that even walking for 2 minutes is healthier than walking 0 minutes. And that some of us have to start exercising at a very low level and gradually increase the level of exercise to accommodate the changes that have happened because of the myeloma and our treatments. So perhaps bowling isn't a good exercise for you to be doing, but there may be something else that is just as satisfying that is safe for you to do without developing pain.
And, just to be clear, I am not your avid exerciser even though I know it is really good for all of us. But I am active and make an effort to stay flexible and strong within the parameters that I have learned are safe and healthy for me.
Nancy in Phila
The only things that I've officially been told about activity is to let my oncologist know if I experience bone pain. As a physical therapist, I know that it's not good to put a lot of stress on bones that have lesions in them. This means to limit activities that place increased impact on the bones, unequal stress on the bones, and rotational stress on the bones. So, things like impact sports, running, free weight training with heavy weights, weight machines with heavy weights, resistance bands, etc. should be done carefully, or not at all. So, I walk, do water aerobics, and use an exercycle. When I do any kind of weight training, I use the weight of my own body in a closed chain position for resistance. Closed chain means that any exercise that you are doing to strengthen your arms means that your hand is planted on a surface or your foot is planted for leg strengthening.
I am always conscious of how I feel while I am exercising / active and how I feel afterwards. If something starts to bother me while I am doing it, I stop doing it. If I become fatigued while I am doing something, I stop and rest for a while and then continue. If I become overly fatigued after exercising or doing an activity, I know that I've done too much and that I need to back off the next time. You don't want to stop everything, but you need to know what your limits are and respect them.
We had a person come to our support group meeting this past Saturday who developed the Cancer Fatigue program at my cancer center and who sees all of the people who have allogeneic transplants there. She reminded people that even walking for 2 minutes is healthier than walking 0 minutes. And that some of us have to start exercising at a very low level and gradually increase the level of exercise to accommodate the changes that have happened because of the myeloma and our treatments. So perhaps bowling isn't a good exercise for you to be doing, but there may be something else that is just as satisfying that is safe for you to do without developing pain.
And, just to be clear, I am not your avid exerciser even though I know it is really good for all of us. But I am active and make an effort to stay flexible and strong within the parameters that I have learned are safe and healthy for me.
Nancy in Phila
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NStewart - Name: Nancy Stewart
- Who do you know with myeloma?: self
- When were you/they diagnosed?: 3/08
- Age at diagnosis: 60
Re: Bone pain - from the tumor, or from bone destruction?
Hi Nancy,
When I was admitted to the hospital in December of 2012, it was due in part to excruciating back and neck pain caused by lytic lesions and other bone damage resulting from the myeloma. Despite the fact that I was in so much pain, and the fact that the x-rays revealed bones that looked like Swiss cheese, I never did have radiation. I have always assumed that the reason I never had radiation was because no one expected me to live.
Following a 12 day stay in the hospital, I returned home but was essentially immobile. Getting from the living room couch (which became my new home) to the bathroom was a major ordeal. We had a cane and we bought a walker, but they were really only used for bathroom necessities and getting to the doctor appointments and Velcade treatments.
I had reached the point where I had begun to think that I really didn't have the strength to continue to live. I had gone from 165 to 125 lbs (75 to 57 kg) and I'm 6' 1" (1.85 m) . Then, one night around mid January of 2013, I went to bed and when I awoke the next day, I was mobile. I had some strength. I just continued to improve from that day forward. As I began to gain strength, my doctor added one of the bone meds; it was immediately clear that I could not tolerate it. We tried the other bone med. Same result. So I just never did the bone meds.
Nancy, in case you're beginning to wonder why I've provided all this background, it's because of the fact that today, 27 months post diagnosis, and 21 months post SCT, I hike 2-3 times per week on a trail that, although only a little over 1 mile in length, is at a 45 degree angle most of the way up. Itt's rocky, covered with roots, often slippery, and I can do the 2 mile round trip, rests included, in about 45 minutes. Most importantly, my only concession to myeloma is that I now hike with hiking poles to avoid falls.
Are my bone lesions healed? I don't know, but I can live my life as if they are. I'll be the first to admit that this transformation did not happen overnight, and there have been setbacks along the way, and I have to assume there may yet be setbacks ahead. But each step of the way, I have trusted my body to provide me with the answer to the very question you have posed.
I hope this helps.
Aloha
Daniel
When I was admitted to the hospital in December of 2012, it was due in part to excruciating back and neck pain caused by lytic lesions and other bone damage resulting from the myeloma. Despite the fact that I was in so much pain, and the fact that the x-rays revealed bones that looked like Swiss cheese, I never did have radiation. I have always assumed that the reason I never had radiation was because no one expected me to live.
Following a 12 day stay in the hospital, I returned home but was essentially immobile. Getting from the living room couch (which became my new home) to the bathroom was a major ordeal. We had a cane and we bought a walker, but they were really only used for bathroom necessities and getting to the doctor appointments and Velcade treatments.
I had reached the point where I had begun to think that I really didn't have the strength to continue to live. I had gone from 165 to 125 lbs (75 to 57 kg) and I'm 6' 1" (1.85 m) . Then, one night around mid January of 2013, I went to bed and when I awoke the next day, I was mobile. I had some strength. I just continued to improve from that day forward. As I began to gain strength, my doctor added one of the bone meds; it was immediately clear that I could not tolerate it. We tried the other bone med. Same result. So I just never did the bone meds.
Nancy, in case you're beginning to wonder why I've provided all this background, it's because of the fact that today, 27 months post diagnosis, and 21 months post SCT, I hike 2-3 times per week on a trail that, although only a little over 1 mile in length, is at a 45 degree angle most of the way up. Itt's rocky, covered with roots, often slippery, and I can do the 2 mile round trip, rests included, in about 45 minutes. Most importantly, my only concession to myeloma is that I now hike with hiking poles to avoid falls.
Are my bone lesions healed? I don't know, but I can live my life as if they are. I'll be the first to admit that this transformation did not happen overnight, and there have been setbacks along the way, and I have to assume there may yet be setbacks ahead. But each step of the way, I have trusted my body to provide me with the answer to the very question you have posed.
I hope this helps.
Aloha
Daniel
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DanielR - Name: Daniel Riebow
- Who do you know with myeloma?: Self
- When were you/they diagnosed?: 12/2012
- Age at diagnosis: 59
Re: Bone pain - from the tumor, or from bone destruction?
I am compelled to write since I no longer live with the bone pain I experienced when I was diagnosed 11-1/2 years ago when I was 51. The extreme pain was due to fractured ribs and vertebrae. That healed over time, largely due to the autologous stem cell transplant, vertebroplasty, and Zometa treatment for 18 months.
I continue to have lesions in various bone locations throughout my body and was told that these do not heal. Radiation treatment for the lesions was never discussed at the time. However, they are monitored for change in yearly x-rays.
I was told that I would never lift more than 5 pounds, but I have returned to normal activity, including lifting, etc. I believe that some careful weight-bearing activity has been helpful in strengthening me after being so weakened during that year of illness and treatment.
I've been in remission for ten years now. It is possible.
I continue to have lesions in various bone locations throughout my body and was told that these do not heal. Radiation treatment for the lesions was never discussed at the time. However, they are monitored for change in yearly x-rays.
I was told that I would never lift more than 5 pounds, but I have returned to normal activity, including lifting, etc. I believe that some careful weight-bearing activity has been helpful in strengthening me after being so weakened during that year of illness and treatment.
I've been in remission for ten years now. It is possible.
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BuffaloPat - Name: Pat
- When were you/they diagnosed?: 2003
- Age at diagnosis: 51
Re: Bone pain - from the tumor, or from bone destruction?
I was told not to do any contact sports, soccer being one of them, because of the risk of fractures.
At age 46, I had pain in my clavicle because it had fractured, and this is how they discovered the myeloma. After treatment, the pain there is gone, although once in a blue moon, the tendons around it can be a little tender.
A year after my SCT, I had rib and back pain again, and fractures, because the myeloma had come back. Treatment took care of that too. But, in general, I don't have much bone pain, but more muscle pain if I do activity, or even from lack of activity, and cold weather.
I also receive Aredia every two months to help strengthen my bones.
All the best to you!!
At age 46, I had pain in my clavicle because it had fractured, and this is how they discovered the myeloma. After treatment, the pain there is gone, although once in a blue moon, the tendons around it can be a little tender.
A year after my SCT, I had rib and back pain again, and fractures, because the myeloma had come back. Treatment took care of that too. But, in general, I don't have much bone pain, but more muscle pain if I do activity, or even from lack of activity, and cold weather.
I also receive Aredia every two months to help strengthen my bones.
All the best to you!!
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Roxane
Re: Bone pain - from the tumor, or from bone destruction?
I had very bad lower back pain when I was diagnosed in 2011. This led to the blood tests which confirmed the diagnosis, but there was no evidence of any lesions or bone damage on scans. My haematologist put it down to the myeloma being "active" in the bones. Post treatment and a stem cell transplant the pain disappeared, and I was in complete remission.
Recently, my paraprotein has come back up and I have also had back and rib pain, but, again, no evidence of bone damage. I've started chemotherapy again a month ago (CyBorD), and the pain has already pretty much gone.
Recently, my paraprotein has come back up and I have also had back and rib pain, but, again, no evidence of bone damage. I've started chemotherapy again a month ago (CyBorD), and the pain has already pretty much gone.
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PeterSydney - Name: Peter Mansfield
- Who do you know with myeloma?: myself
- When were you/they diagnosed?: 2011
- Age at diagnosis: 45
Re: Bone pain - from the tumor, or from bone destruction?
Hi Buffalo Pat,
I can't believe I missed your post yesterday. It is great to hear that you are still in remission and it sounds like you have an excellent quality of life. A 10-year myeloma drug-free remission! Positive vibes being sent your way that this is a "permanent remission"!
Thanks for your columns. You were one of the featured writers when I was first diagnosed back in 2010.
When I was diagnosed, I was taking pain pills 24 / 7. I only need to put a cream on my lower back if I "over do it" now.
Mark
I can't believe I missed your post yesterday. It is great to hear that you are still in remission and it sounds like you have an excellent quality of life. A 10-year myeloma drug-free remission! Positive vibes being sent your way that this is a "permanent remission"!
Thanks for your columns. You were one of the featured writers when I was first diagnosed back in 2010.
When I was diagnosed, I was taking pain pills 24 / 7. I only need to put a cream on my lower back if I "over do it" now.
Mark
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Mark11
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