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Re: What do bone lesions feel like?
Thanks Nancy. Last time I had Zometa I had a reaction to it, my calcium and potassium dropped to nothing and I spent a day in the hospital because of it. So rather than a 4mg infusion, they are going to try a 1mg infusion on me next week.
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Retired813 - Name: Joyce
- Who do you know with myeloma?: Myself
- When were you/they diagnosed?: 2010
- Age at diagnosis: 55
Re: What do bone lesions feel like?
I hope that the Zometa infusion works better for you! BTW, I was treated with Aredia. When I started treatments, that was what was available here ... Now Zometa is also available. The Aredia worked well for me though, and although I think that Zometa is considered to have more 'chemotherapy' qualities, Aredia might be an option also! Wishing you luck with all of this!
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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: What do bone lesions feel like?
To ask the question more specifically: Is there any sensation associated with the changes in the bone before they fracture?
I have had an almost constant hot streak of mild pain in my upper leg for three months. I wondered if this could be the beginning of lesions. I happened to have PET/CT done just three weeks after the leg pain began. It didn't show any lesions.
I have had an almost constant hot streak of mild pain in my upper leg for three months. I wondered if this could be the beginning of lesions. I happened to have PET/CT done just three weeks after the leg pain began. It didn't show any lesions.
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Zan
Re: What do bone lesions feel like?
Zan:
If you have a clean PET scan, etc and your labs are good--then don't make yourself crazy.
btw-What is your "karotype" ?
30 % Bone erosion/ damage is required for an x-ray to pick up a "lesion". Less for MRI/ PET SCAN/ CT scan--however, Radiologists / oncologists debate this all the time.
My ribs felt like a Fx (they were Fx'd from a fall) and then deep bone bruised. My Anterior skull had a soft spot in it--that hurt when you pressed on it. Especially as time went on.
I didn't feel the one in my pelvis at all.
Most people report a feeling similar to a lingering deep bone bruise...or just nothing at all.
Most people acknowledge that once they have had a Plasmacytoma---they tend to worry about return---even people in long term remission(s). It tends to fade with time.
Breathe deep, relax, and enjoy the ride. It gets better.
Good luck.
If you have a clean PET scan, etc and your labs are good--then don't make yourself crazy.
btw-What is your "karotype" ?
30 % Bone erosion/ damage is required for an x-ray to pick up a "lesion". Less for MRI/ PET SCAN/ CT scan--however, Radiologists / oncologists debate this all the time.
My ribs felt like a Fx (they were Fx'd from a fall) and then deep bone bruised. My Anterior skull had a soft spot in it--that hurt when you pressed on it. Especially as time went on.
I didn't feel the one in my pelvis at all.
Most people report a feeling similar to a lingering deep bone bruise...or just nothing at all.
Most people acknowledge that once they have had a Plasmacytoma---they tend to worry about return---even people in long term remission(s). It tends to fade with time.
Breathe deep, relax, and enjoy the ride. It gets better.
Good luck.
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Rneb
Re: What do bone lesions feel like?
In my case, one lesion that caused a compression fracture of a vertebra was not felt until the fracture, then that was REALLY felt!
A big lesion in my femur caused soreness when I extended my leg to get out of my car. At night, lying quietly, I felt tingling at the tips of a few ribs. That was lesions getting started.
A big lesion in my femur caused soreness when I extended my leg to get out of my car. At night, lying quietly, I felt tingling at the tips of a few ribs. That was lesions getting started.
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Mister Dana - Name: Mister Dana
- Who do you know with myeloma?: Me
- When were you/they diagnosed?: December 2013
- Age at diagnosis: 66
Re: What do bone lesions feel like?
I had this same question when I was diagnosed with smoldering myeloma. My oncologist said that I should contact him if I felt bone pain. Well, never having had a fracture, I had no idea what bone pain would feel like. A year later I found out.
I developed pain in my left humerus that felt like it might be epicondylitis of the elbow. The area was in the right place for it, and it was swollen. I took OTC pain medicine and used ice for the swelling, but the pain continued to get worse. One day at work, I went to do something at shoulder height with my left arm and couldn't lift it. The pain was excruciating.
I went to the ER and was told that I had a fracture and that there were cancerous lesions where the fracture was. I felt sorry for the resident who had to give me the news. She was very hesitant to tell me what that meant. Fortunately for her, it didn't freak me out, because I had been warned that bone lesions were possible. Once I started treatment, the pain in the fracture site began to resolve. None of the pain medications that were prescribed had touched the pain.
My second incident with bone pain came while I was doing rehab following knee replacement surgery. When doing some of my exercises in PT, my left lower leg began to hurt so much that I would have to stop doing some of the exercises. When I reported the pain to my oncologist, he ordered a scan of my legs. I had a lesion in both of my fibulae, the small bone next to the tibia in the lower leg. He sent me to have radiation to the one in my left leg, since it was symptomatic. I had also relapsed at the same time.
Except for my left humerus and my left fibula, none of the multiple other lesions that I have throughout my body ever bother me. I do have occasional aching in the two problematic sites when I'm over tired or have done too much physical exertion.
Report any unusual significant pain to your oncologist. I recently had pain in my right thigh that limited my ability to stand and walk. Scans came back negative. I started a stretching program that focused on the front of my thigh and hip and the side of my thigh. It took about a month of religiously stretching both areas before the pain resolved. Now, I do the stretches every other day.
I also am on Zometa infusions every 6 weeks.
Nancy in Phila
I developed pain in my left humerus that felt like it might be epicondylitis of the elbow. The area was in the right place for it, and it was swollen. I took OTC pain medicine and used ice for the swelling, but the pain continued to get worse. One day at work, I went to do something at shoulder height with my left arm and couldn't lift it. The pain was excruciating.
I went to the ER and was told that I had a fracture and that there were cancerous lesions where the fracture was. I felt sorry for the resident who had to give me the news. She was very hesitant to tell me what that meant. Fortunately for her, it didn't freak me out, because I had been warned that bone lesions were possible. Once I started treatment, the pain in the fracture site began to resolve. None of the pain medications that were prescribed had touched the pain.
My second incident with bone pain came while I was doing rehab following knee replacement surgery. When doing some of my exercises in PT, my left lower leg began to hurt so much that I would have to stop doing some of the exercises. When I reported the pain to my oncologist, he ordered a scan of my legs. I had a lesion in both of my fibulae, the small bone next to the tibia in the lower leg. He sent me to have radiation to the one in my left leg, since it was symptomatic. I had also relapsed at the same time.
Except for my left humerus and my left fibula, none of the multiple other lesions that I have throughout my body ever bother me. I do have occasional aching in the two problematic sites when I'm over tired or have done too much physical exertion.
Report any unusual significant pain to your oncologist. I recently had pain in my right thigh that limited my ability to stand and walk. Scans came back negative. I started a stretching program that focused on the front of my thigh and hip and the side of my thigh. It took about a month of religiously stretching both areas before the pain resolved. Now, I do the stretches every other day.
I also am on Zometa infusions every 6 weeks.
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: What do bone lesions feel like?
Great question.
After I had my first bone survey, it indicated several lesion sites in my skull, ribs and spine. I was working as a heavy equipment technician and had to crawl all over machinery that needed repairs. That being said, I remember the year before my diagnosis I started having some sharp pain in my spine when I would start to lie on my back. It would go away after I settled down, but would come back when I tried to get up again.
I did have this odd pain in my skull, which I would describe as a instant sharp pain. It would hit instantly and go away just as fast. It was all of four or five seconds long. Of course, I took some ibuprofen (Advil), and that helped with the pain. I always thought it was just my line of work and the stress I was under.
Looking back, the pain locations were also in the locations shown on the bone survey; maybe just coincidence, but it pinpoints those areas.
Once I started treatments of Revlimid / dex, the pain in my skull and back dissipated and eventually stopped. I also started Zometa treatments about three months ago.
Hope this helps.
Castaway
After I had my first bone survey, it indicated several lesion sites in my skull, ribs and spine. I was working as a heavy equipment technician and had to crawl all over machinery that needed repairs. That being said, I remember the year before my diagnosis I started having some sharp pain in my spine when I would start to lie on my back. It would go away after I settled down, but would come back when I tried to get up again.
I did have this odd pain in my skull, which I would describe as a instant sharp pain. It would hit instantly and go away just as fast. It was all of four or five seconds long. Of course, I took some ibuprofen (Advil), and that helped with the pain. I always thought it was just my line of work and the stress I was under.
Looking back, the pain locations were also in the locations shown on the bone survey; maybe just coincidence, but it pinpoints those areas.
Once I started treatments of Revlimid / dex, the pain in my skull and back dissipated and eventually stopped. I also started Zometa treatments about three months ago.
Hope this helps.
Castaway
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Castaway - Name: George
- Who do you know with myeloma?: just myself
- When were you/they diagnosed?: 1/24/14
- Age at diagnosis: 62
Re: What do bone lesions feel like?
Interesting, thanks.
I have had smoldering (I live in the UK) for 4+ years now. Recently my right leg has felt rather weak, and I have pains down the thigh, which I thought were probably muscular. Not sure why I would have them though, expect I am worrying about nothing.
Over here we don't do much in the way of intervention - maybe I could ask for an MRI, but that is fairly uncommon.
I go to a private clinic and have Zometa.
Marion
I have had smoldering (I live in the UK) for 4+ years now. Recently my right leg has felt rather weak, and I have pains down the thigh, which I thought were probably muscular. Not sure why I would have them though, expect I am worrying about nothing.
Over here we don't do much in the way of intervention - maybe I could ask for an MRI, but that is fairly uncommon.
I go to a private clinic and have Zometa.
Marion
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marion
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