Hi everyone
I was wondering if any of you have had any experience with bone damage due to multiple myeloma?
My mum was diagnosed in September and just after her CT scan the doctor came in with a neck collar that she had to wear (and still is) all the time due to a damage in the third or fourth vertebrae. In English its probably called an osteolytic lesion. The doctor calls it a "clarification" where the risk for fracture is high, thus the neck collar.
Now, after almost two months, the damage is still there and not improved, but not worse wither.
When we asked her doctor about what the long term consequences are, she said "we don't know". My mum is a cyclist and now she doesn't know whether she can get on a bike again. The uncertainty is frightening and extremely sad.
Otherwise she is responding quite well to the induction therapy (cyclophosphamide, Velcade, dex) and is undergoing stem cell transplantation in January. She has the rare form light chain multiple myeloma.
I'm extremely grateful for all the answers to my question.
Kind regards from a concerned daughter from Norway
Forums
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kristine - Name: Kristine
- Who do you know with myeloma?: My mum
- When were you/they diagnosed?: Sep,2015
- Age at diagnosis: 53
Re: Have you had bone damage from multiple myeloma?
Hi Kristine,
Is your mother receiving Zometa (or perhaps Aredia)?
Best regards lev
Is your mother receiving Zometa (or perhaps Aredia)?
Best regards lev
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Lev - Name: Lev
- Who do you know with myeloma?: Me
- When were you/they diagnosed?: June 2014
- Age at diagnosis: 57
Re: Have you had bone damage from multiple myeloma?
Hi Kristine,
Bone damage is the most common symptom myeloma patients have at diagnosis. It happens in 4 out of 5 newly diagnosed patients. Please see this posting I made recently with information on symptoms at diagnosis:
"Most common symptoms at multiple myeloma diagnosis", Nov 5, 2015
Also, light chain multiple myeloma is far from rare – it occurs in 15-20% of newly diagnosed patients.
Given that bone damage is so common at (and after) diagnosis, there are A LOT of discussions here in the forum on the subject. I did a quick search for topics that have "lesion", "lesions", "fracture", or "fractures" in their title, and found over 80 of them. Among them, you'll find discussions on whether or not lesions heal, treatments that may help lesions heal, etc. You may be able to find other discussions on related topics by typing in a relevant keyword in the search box.
As several people here like to say, the forum search box is your friend.
Bone damage is the most common symptom myeloma patients have at diagnosis. It happens in 4 out of 5 newly diagnosed patients. Please see this posting I made recently with information on symptoms at diagnosis:
"Most common symptoms at multiple myeloma diagnosis", Nov 5, 2015
Also, light chain multiple myeloma is far from rare – it occurs in 15-20% of newly diagnosed patients.
Given that bone damage is so common at (and after) diagnosis, there are A LOT of discussions here in the forum on the subject. I did a quick search for topics that have "lesion", "lesions", "fracture", or "fractures" in their title, and found over 80 of them. Among them, you'll find discussions on whether or not lesions heal, treatments that may help lesions heal, etc. You may be able to find other discussions on related topics by typing in a relevant keyword in the search box.
As several people here like to say, the forum search box is your friend.
Re: Have you had bone damage from multiple myeloma?
Lev - Yes, I think she is receiving Zometa. At least I know she is receiving IV fluids for strengthening the bones every 4 weeks.
Terryh - OK, thank you! I should´ve read all the threads concerning this beforehand.
Regards
Terryh - OK, thank you! I should´ve read all the threads concerning this beforehand.
Regards
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kristine - Name: Kristine
- Who do you know with myeloma?: My mum
- When were you/they diagnosed?: Sep,2015
- Age at diagnosis: 53
Re: Have you had bone damage from multiple myeloma?
Hi Kristine,
My dad had bone damage caused by a solitary bone plasmacytoma inside of one of his vertebrae. The lesion had to be removed by surgery and titanium supports to stabilize the spine two vertebrae above and below the one with the lesion.
Like your mom, my dad's "indicators" are light-chain as well.
What part of Norway are you in?
My dad had bone damage caused by a solitary bone plasmacytoma inside of one of his vertebrae. The lesion had to be removed by surgery and titanium supports to stabilize the spine two vertebrae above and below the one with the lesion.
Like your mom, my dad's "indicators" are light-chain as well.
What part of Norway are you 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: Have you had bone damage from multiple myeloma?
Little Monkey,
Thank you for your reply. Plasmacytoma is a tumor growth of plasma cells?
Our doctor has said nothing about any kyphoplasty or anything.
We live in Trondheim, middle part of Norway.
Thank you for your reply. Plasmacytoma is a tumor growth of plasma cells?
Our doctor has said nothing about any kyphoplasty or anything.
We live in Trondheim, middle part of Norway.
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kristine - Name: Kristine
- Who do you know with myeloma?: My mum
- When were you/they diagnosed?: Sep,2015
- Age at diagnosis: 53
Re: Have you had bone damage from multiple myeloma?
Yes, plasmacytoma is a solid mass of plasma cells, it can be inside a bone or grow outside a bone, especially, but not always, in spine areas. My dad had five weeks of radiation after surgery.
Vertebroplasty/kyphoplasty are usually done when the neoplasm is too big to be simply hit with radiation and surgery is needed. The same day my dad had an MRI was the same day he was put in an ambulance and taken to a teaching hospital 100 km away; 48 hours later he had a 5-hour surgery to remove the neoplasm.
Trondheim, that is a fairly large city by Norwegian standards; you should have most of the needed specialists in Trondheim for your mom; I don't know if your mom will have to go to Oslo at some point for a consult with a myeloma specialist (Norway is a lot like Canada I would imagine, in that myeloma specialist are concentrated in largest of cities).
Has she been seen by a spine/neurosurgeon for an opinion? What about a radiation oncologist to determine if radiation would be of any help?
What kind of doctor is under control of your mom care right now?
Vertebroplasty/kyphoplasty are usually done when the neoplasm is too big to be simply hit with radiation and surgery is needed. The same day my dad had an MRI was the same day he was put in an ambulance and taken to a teaching hospital 100 km away; 48 hours later he had a 5-hour surgery to remove the neoplasm.
Trondheim, that is a fairly large city by Norwegian standards; you should have most of the needed specialists in Trondheim for your mom; I don't know if your mom will have to go to Oslo at some point for a consult with a myeloma specialist (Norway is a lot like Canada I would imagine, in that myeloma specialist are concentrated in largest of cities).
Has she been seen by a spine/neurosurgeon for an opinion? What about a radiation oncologist to determine if radiation would be of any help?
What kind of doctor is under control of your mom care right now?
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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: Have you had bone damage from multiple myeloma?
Hi Kristine,
As has been said by others, bone damage is a common symptom of multiple myeloma. The myeloma cells live in the bone marrow and interfere with the normal process by which our bones are constantly renewed, causing an imbalance in that process that results in more bone being torn down than is built up. That results in weak spots or holes in the bone, called lytic lesions, and they frequently result in pain.
In many cases (as in my case), there is no plasmacytoma. In the case of myeloma in the spine, the bones become so weak that the vertebrae may fracture. When that happens, it can also be very painful, and either kyphoplasty or vertebroplasty can be done to stabilize vertebrae fractures that result from the destructive myeloma process. In many cases, these surgical procedures are effective in relieving pain. I had two fractured vertebrae repaired by kyphoplasy, and my pain was lessened considerably.
More generally, treatment that gets the myeloma under control often results in the improvement or disappearance of bone pain. Not in all cases, but you will find many posts on this forum that do report a lessening of pain with successful myeloma treatment.
Some people have reported healing of the lytic lesions with myeloma treatment, and some report that the lesions do not heal, but successful treatment stops new ones from forming. Drugs like Zometa are usually given by infusion to stengthen the bones and help prevent fractures.
Wishing quick relief for your mum, and all the best for you and your mum as you pursue treatment.
As has been said by others, bone damage is a common symptom of multiple myeloma. The myeloma cells live in the bone marrow and interfere with the normal process by which our bones are constantly renewed, causing an imbalance in that process that results in more bone being torn down than is built up. That results in weak spots or holes in the bone, called lytic lesions, and they frequently result in pain.
In many cases (as in my case), there is no plasmacytoma. In the case of myeloma in the spine, the bones become so weak that the vertebrae may fracture. When that happens, it can also be very painful, and either kyphoplasty or vertebroplasty can be done to stabilize vertebrae fractures that result from the destructive myeloma process. In many cases, these surgical procedures are effective in relieving pain. I had two fractured vertebrae repaired by kyphoplasy, and my pain was lessened considerably.
More generally, treatment that gets the myeloma under control often results in the improvement or disappearance of bone pain. Not in all cases, but you will find many posts on this forum that do report a lessening of pain with successful myeloma treatment.
Some people have reported healing of the lytic lesions with myeloma treatment, and some report that the lesions do not heal, but successful treatment stops new ones from forming. Drugs like Zometa are usually given by infusion to stengthen the bones and help prevent fractures.
Wishing quick relief for your mum, and all the best for you and your mum as you pursue treatment.
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MrPotatohead - Name: MrPotatohead
- Who do you know with myeloma?: Me
- When were you/they diagnosed?: March, 2015
- Age at diagnosis: 65
Re: Have you had bone damage from multiple myeloma?
My multiple myeloma was diagnosed in July after I was suddenly unable to put any weight on my left leg. After an x-ray and some other tests, I was told that I had a lytic lesion in my left femoral neck that was so large I was an imminent fracture risk and they suspected the cause was multiple myeloma.
A bunch of tests layer, I learned that I had Stage 3, high-risk multiple myeloma. Up until a week before that time, I had been walking 5-7 miles per day.
A bone survey was done and they found small lesions in both humeri, another in my right femur, and one on my sacrum.
A week later, while still in the hospital, I had my left hip repaired with a rod and nail.
Now, I've rehabbed to the point that I only use a cane for stairs or longer trips.
A bunch of tests layer, I learned that I had Stage 3, high-risk multiple myeloma. Up until a week before that time, I had been walking 5-7 miles per day.
A bone survey was done and they found small lesions in both humeri, another in my right femur, and one on my sacrum.
A week later, while still in the hospital, I had my left hip repaired with a rod and nail.
Now, I've rehabbed to the point that I only use a cane for stairs or longer trips.
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Bikeman48088 - Name: Mark
- Who do you know with myeloma?: Self
- When were you/they diagnosed?: July 2015
- Age at diagnosis: 58
Re: Have you had bone damage from multiple myeloma?
When I was diagnosed in 2003, they found 3 lesions in lower part of my right femur. I did get radiation treatment on them. Two were approximately 1 cm and 1 was about 3 cm. They're still there, and have not gotten worse.
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allenbonslett - Who do you know with myeloma?: Me
- When were you/they diagnosed?: 12/2003
- Age at diagnosis: 43
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