I recently had two lesions show up on a scan. One was on my right leg just above the knee, the other was on my right arm just above the elbow. This got me to wondering how often people get lesions on their legs below the knee.
So for interest sake only, I thought it might be interesting to hear from anyone who has or had lesions below the knee or elbow.
What kind of test was used to find them? Do you have any other info you might care to share?
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gmarv - Name: marvin
- Who do you know with myeloma?: myself
- When were you/they diagnosed?: aug.2012
- Age at diagnosis: 57
Re: Lytic lesion locations
My lesions are also in my limbs. My spine, hips, ribs have shown no evidence of bone involvement.
I learned of my multiple myeloma via a plasmacytoma last November, which started in my left tibia and broke out from there. At the time, I was beginning to have pain in my right fibula and tenderness in my left wrist.
My tumor surgeon did x-rays of my legs and left arm / wrist, which showed activity. A couple months after my surgery, I had contrast and no-contrast MRIs of my right leg and left forearm. The lesion in my forearm had doubled, and the fibula lesions had also increased.
My numbers were never very elevated (IgA lambda) and came into normal range after my first chemo cycle. Whether it's because I don't have many myeloma cells (my myeloma specialist's view), or that I am minimally secretory (suggestion by a noted myeloma specialist at a recent conference), I don't know. What I do know is: I want to better understand the odd behavior of my myeloma!
I learned of my multiple myeloma via a plasmacytoma last November, which started in my left tibia and broke out from there. At the time, I was beginning to have pain in my right fibula and tenderness in my left wrist.
My tumor surgeon did x-rays of my legs and left arm / wrist, which showed activity. A couple months after my surgery, I had contrast and no-contrast MRIs of my right leg and left forearm. The lesion in my forearm had doubled, and the fibula lesions had also increased.
My numbers were never very elevated (IgA lambda) and came into normal range after my first chemo cycle. Whether it's because I don't have many myeloma cells (my myeloma specialist's view), or that I am minimally secretory (suggestion by a noted myeloma specialist at a recent conference), I don't know. What I do know is: I want to better understand the odd behavior of my myeloma!
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moonscape - Who do you know with myeloma?: me
- When were you/they diagnosed?: 11/2015
Re: Lytic lesion locations
I have lesions everywhere including both of my fibula. In 2012, when I was recovering from a left total knee replacement and going for physical therapy, I started to have excruciating pain in my lower left leg with the exercises I was doing in PT. I often had to stop an exercise because of the pain. When I reported it to my oncologist, he sent me for a skeletal x-ray and for x-rays of both of my lower legs. The x-rays showed that I had lesions in both of my fibulae. Because the one in my left leg was symptomatic, my oncologist referred me to the radiation oncologist. I had 6 sessions of radiation to the left fibula.
It was discovered that I had relapsed about 2 weeks before I was scheduled to have the knee surgery. I refused restarting treatment at the time because of the surgery. I restarted treatment following the oncology appointment where I reported the lower leg pain.
Unfortunately skeletal x-rays don't include regions of the body below the knees or the elbows because there isn't much bone marrow in those bones. My oncologist had to order a separate set of x-rays for my lower legs.
Nancy in Phila
It was discovered that I had relapsed about 2 weeks before I was scheduled to have the knee surgery. I refused restarting treatment at the time because of the surgery. I restarted treatment following the oncology appointment where I reported the lower leg pain.
Unfortunately skeletal x-rays don't include regions of the body below the knees or the elbows because there isn't much bone marrow in those bones. My oncologist had to order a separate set of x-rays for my lower legs.
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: Lytic lesion locations
Thanks to you both (Moonscape, Nancy) for taking the time to respond to my question.
The part of Nancy's post above that interests me is why would you get lesions in an area that has minimal amounts of bone marrow.
When I was diagnosed, I had lesions in both shoulders and my pelvis. Now these new ones in my limbs. There seems to be no logic in how the enemy wants to attack me.
The part of Nancy's post above that interests me is why would you get lesions in an area that has minimal amounts of bone marrow.
When I was diagnosed, I had lesions in both shoulders and my pelvis. Now these new ones in my limbs. There seems to be no logic in how the enemy wants to attack me.
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gmarv - Name: marvin
- Who do you know with myeloma?: myself
- When were you/they diagnosed?: aug.2012
- Age at diagnosis: 57
Re: Lytic lesion locations
A plasmacytoma broke my left distal femur and shortly after that I was diagnosed with multiple myeloma and amyloidosis. An exterior fixator was placed, and surgery/repair with hardware was performed 10 days later and then two weeks of radiation. During all this time, no one thought to x-ray the lower left leg. I even had a bone scan during my post-op time in the hospital but, YES, the scan stops at the knees!
About four months after repair of my femur, I was feeling strange sensations in the lower leg and requested my oncologist order an x-ray. Sure enough, a large plasmacytoma was found in the tibia (had been there quite some time), and I had to undergo high-dose radiation to the tibia. I was lucky the tibia didn't go on to fracture as the femur did.
In retrospect, the frightening thing is that when my femur broke, the lesion in the tibia was there and no one ever thought to look below the knee. The exterior fixator was nailed right through the lesion in the tibia!
Now two years later, I'm alive and able to walk with a cane but still have huge spaces in femur and tibia from cancer and radiation. I was told the bone will never fill in.
I just had a full body PET/CT scan head to toe to look for lesions.
Moral of story: Plasmacytomas can be anywhere. Yes, absolutely they can form below the knees, so it is ridiculous that a bone scan done with x-ray stops at the knees.
About four months after repair of my femur, I was feeling strange sensations in the lower leg and requested my oncologist order an x-ray. Sure enough, a large plasmacytoma was found in the tibia (had been there quite some time), and I had to undergo high-dose radiation to the tibia. I was lucky the tibia didn't go on to fracture as the femur did.
In retrospect, the frightening thing is that when my femur broke, the lesion in the tibia was there and no one ever thought to look below the knee. The exterior fixator was nailed right through the lesion in the tibia!
Now two years later, I'm alive and able to walk with a cane but still have huge spaces in femur and tibia from cancer and radiation. I was told the bone will never fill in.
I just had a full body PET/CT scan head to toe to look for lesions.
Moral of story: Plasmacytomas can be anywhere. Yes, absolutely they can form below the knees, so it is ridiculous that a bone scan done with x-ray stops at the knees.
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Melpen - Name: Melissa
- Who do you know with myeloma?: myself
- When were you/they diagnosed?: Feb 5, 2014
- Age at diagnosis: 57
Re: Lytic lesion locations
Melissa,
You might want to look at this post here in the forum with respect to lesion holes healing. The before and after pictures are astonishing.
You might want to look at this post here in the forum with respect to lesion holes healing. The before and after pictures are astonishing.
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Multibilly - Name: Multibilly
- Who do you know with myeloma?: Me
- When were you/they diagnosed?: Smoldering, Nov, 2012
Re: Lytic lesion locations
Thanks for the link, Multibilly. You are so very helpful to everyone on the Beacon.
Something that may be of interest is that my bones did show a good bit of growth and filling in from January to June of 2015, but this was post-transplant during a time I was OFF all chemo and dex.
I resumed chemo and dex in the summer of 2015, and when I had followup February 2016 with ortho, the x-ray looked the same as that of June 2015: no more growth or filling in. I was really bummed as I had been walking quite a bit (that promotes bone growth) and had quite a few infusions of Zometa during that time.
I really believe that the dex is preventing the bone growth. If I could get my M-Spike and light chains low enough to get off dex, I believe the bones would start filling in again. Anyhow, I won't give up hope because as your link shows even the biggest spaces left by plasmacytomas CAN heal with time - (but I think it's interesting that the patient was chemo/dex free during that time, with SPEP low and taking curcumin).
I guess the docs and patients just have to figure out what it takes to make it happen. Maybe someday docs will come up with a chemo plan without dex for those myeloma patients who need bone growth.
Something that may be of interest is that my bones did show a good bit of growth and filling in from January to June of 2015, but this was post-transplant during a time I was OFF all chemo and dex.
I resumed chemo and dex in the summer of 2015, and when I had followup February 2016 with ortho, the x-ray looked the same as that of June 2015: no more growth or filling in. I was really bummed as I had been walking quite a bit (that promotes bone growth) and had quite a few infusions of Zometa during that time.
I really believe that the dex is preventing the bone growth. If I could get my M-Spike and light chains low enough to get off dex, I believe the bones would start filling in again. Anyhow, I won't give up hope because as your link shows even the biggest spaces left by plasmacytomas CAN heal with time - (but I think it's interesting that the patient was chemo/dex free during that time, with SPEP low and taking curcumin).
I guess the docs and patients just have to figure out what it takes to make it happen. Maybe someday docs will come up with a chemo plan without dex for those myeloma patients who need bone growth.
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Melpen - Name: Melissa
- Who do you know with myeloma?: myself
- When were you/they diagnosed?: Feb 5, 2014
- Age at diagnosis: 57
7 posts
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