Hi Lys,
Ontario will fund PET scans for myeloma if your specialist can make a good case for why (assist in distinguishing cases of solitary plasmacytoma vs. nonsecretory multiple myeloma).
Forums
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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: Best bring a cup of tea, this is going to be long
Good to know. Unfortunately, I was diagnosed 6.5 years ago with advanced myeloma (standard risk) and did chemo plus stem cell transplant. Have now relapsed, waiting to restart treatment. Standard imaging (bone survey and yearly spine MRI, plus bone density every two years). Nothing unique about me other then my age! (32 when diagnosed) IgG myeloma.
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lys2012 - Name: Alyssa
- When were you/they diagnosed?: 2010, Toronto, Canada
- Age at diagnosis: 32
Re: Best bring a cup of tea, this is going to be long
Hey there, Lys2012.
Yes, I had a CT with IV and oral contrast, results normal. More and more, I suspect that whatever caused my rib(s) to break is something other than lesions from myeloma. Not long after I had the bone scan, the internal medicine doctor who was seeing me, said it could be fibrous dysplasia (as well as saying it could be multiple myeloma or metastatic cancer of unknown primary), and I'm wondering now if that is the culprit after all.
Of all the imaging I've had (x-rays, CT scans, ultrasounds, bone scan, skeletal survey), the only abnormalities are "lucent lesions on ribs, 2 right side, 3 or maybe 4 on right side".
I really wish I could just leave this behind me and live with a bit of rib pain. I'd be happy with that! I'm reluctant to do so, though, until I've at least made the attempt to rule out a solitary plasmacytoma.
I'm sorry to hear of your relapse. That bites.
Yes, I had a CT with IV and oral contrast, results normal. More and more, I suspect that whatever caused my rib(s) to break is something other than lesions from myeloma. Not long after I had the bone scan, the internal medicine doctor who was seeing me, said it could be fibrous dysplasia (as well as saying it could be multiple myeloma or metastatic cancer of unknown primary), and I'm wondering now if that is the culprit after all.
Of all the imaging I've had (x-rays, CT scans, ultrasounds, bone scan, skeletal survey), the only abnormalities are "lucent lesions on ribs, 2 right side, 3 or maybe 4 on right side".
I really wish I could just leave this behind me and live with a bit of rib pain. I'd be happy with that! I'm reluctant to do so, though, until I've at least made the attempt to rule out a solitary plasmacytoma.
I'm sorry to hear of your relapse. That bites.
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RobinRosemary - Name: Robin
- Who do you know with myeloma?: Undiagnosed
- When were you/they diagnosed?: 51
Re: Best bring a cup of tea, this is going to be long
It would be good to get a general health check up to see if anything else shows up. I would also ask for a mammogram just to check. Good luck!
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lys2012 - Name: Alyssa
- When were you/they diagnosed?: 2010, Toronto, Canada
- Age at diagnosis: 32
Re: Best bring a cup of tea, this is going to be long
Good day to you, lys2012.
I did have a mammogram during all that testing, results normal. That was the first thing I was told, was that the rib probably broke because I had a metastasized breast cancer. Then after the mammogram was clear, they said it must be a metastasized cancer of unknown primary and went on the hunt for that, but found nothing (thankfully).
Still waiting for the appointment with the surgeon, but I'm beginning to wonder if I'll ever have an explanation for the fracture and lesions on my ribs. Very strange.
Buckets of luck to you, as well.
I did have a mammogram during all that testing, results normal. That was the first thing I was told, was that the rib probably broke because I had a metastasized breast cancer. Then after the mammogram was clear, they said it must be a metastasized cancer of unknown primary and went on the hunt for that, but found nothing (thankfully).
Still waiting for the appointment with the surgeon, but I'm beginning to wonder if I'll ever have an explanation for the fracture and lesions on my ribs. Very strange.
Buckets of luck to you, as well.
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RobinRosemary - Name: Robin
- Who do you know with myeloma?: Undiagnosed
- When were you/they diagnosed?: 51
Re: Best bring a cup of tea, this is going to be long
Did they do a regular mammogram? I was talking to a woman who had breast cancer. Said all her check ups came back good. After reading about 3-D mammograms decided she would ask for a 3-D. Well it came back she had stage 4 breast cancer. She was telling all the women, ask for 3-D mammogram.
Re: Best bring a cup of tea, this is going to be long
This has been the strangest six months of my life.
It started with a broken rib in February, and ended yesterday when my oncologist sat down and told me that everything that has happened since the initial x-ray – blood tests, urine tests, bone marrow biopsy, CT scans, x-rays, bone scans, and terrified freaking-out – has proven conclusively that I have a badly fractured rib and several smaller fractured ribs, all of which are healing properly. The doctors' assumption is that when I was shoveling snow and pushing with the handle centred in my sternum, I broke four or five ribs in a contiguous line. Because the appearance of the largest fracture was irregular, that started this whole ball rolling, and also leads my oncologist to say that he suspects there was some underlying weakness in that bone; maybe a small cyst, that caused it to break and also caused the irregular appearance.
It's almost like it's hard to believe, although believe you me, I'm quite happy to be in this position! I will go back in October for yet another CT and more blood testing, but at this point, I'm sure there's nothing wrong. The rib still hurts a little, and apparently may always do so – a small price I'm happy to pay.
I want to thank everyone here, everyone who gave me advice and support, and everyone else, too. You're providing an invaluable resource for people who don't know where to turn. I can't tell you how much comfort I got from speaking with you, and from reading other peoples' posts. There really aren't words to say how grateful I am to for this diagnosis, and I wish all of you, all the luck in the world.
Thank you again, from the bottom of my heart.
Robin C, Port Colborne, ON
It started with a broken rib in February, and ended yesterday when my oncologist sat down and told me that everything that has happened since the initial x-ray – blood tests, urine tests, bone marrow biopsy, CT scans, x-rays, bone scans, and terrified freaking-out – has proven conclusively that I have a badly fractured rib and several smaller fractured ribs, all of which are healing properly. The doctors' assumption is that when I was shoveling snow and pushing with the handle centred in my sternum, I broke four or five ribs in a contiguous line. Because the appearance of the largest fracture was irregular, that started this whole ball rolling, and also leads my oncologist to say that he suspects there was some underlying weakness in that bone; maybe a small cyst, that caused it to break and also caused the irregular appearance.
It's almost like it's hard to believe, although believe you me, I'm quite happy to be in this position! I will go back in October for yet another CT and more blood testing, but at this point, I'm sure there's nothing wrong. The rib still hurts a little, and apparently may always do so – a small price I'm happy to pay.
I want to thank everyone here, everyone who gave me advice and support, and everyone else, too. You're providing an invaluable resource for people who don't know where to turn. I can't tell you how much comfort I got from speaking with you, and from reading other peoples' posts. There really aren't words to say how grateful I am to for this diagnosis, and I wish all of you, all the luck in the world.
Thank you again, from the bottom of my heart.
Robin C, Port Colborne, ON
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RobinRosemary - Name: Robin
- Who do you know with myeloma?: Undiagnosed
- When were you/they diagnosed?: 51
Re: Best bring a cup of tea, this is going to be long
Hi Robin,
So very happy to hear your wonderful news!
All the best to you,
Karen
So very happy to hear your wonderful news!
All the best to you,
Karen
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KarenaD - Name: Karen
- Who do you know with myeloma?: Myself
- When were you/they diagnosed?: November 4, 2015
- Age at diagnosis: 54
48 posts
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