Hi everyone.
I've been recently diagnosed with solitary plasmacytoma of the bone (left femur) and am wondering about the timing and type of follow-up tests to evaluate treatment response.
I've searched the forums and the site and gotten some excellent information overall. Thank you! The information here has helped me be certain that my docs have done all the proper tests to ensure that this is (so far as anyone can tell) truly a plasmacytoma and not systemic myeloma.
I'm scheduled to start radiotherapy week after next, and I understand that it will be a while before accurate evaluation can be done to see the effects of treatment. But I'm unsure how long is appropriate. My doc suggests a PET-CT scan 6-8 weeks after the end of radiotherapy. Does that sound right?
Also, is there typically a follow-up bone marrow biopsy at the plasmacytoma site to determine if it worked?
Thanks for your help.
Forums
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Re: Solitary plasmacytoma: post-treatment evaluation timing?
Stewie,
I had a plasmacytoma in a rib back in 2011 before I developed multiple myeloma. The doctor did a CT-guided biopsy of the growth before surgery to be sure of what they were dealing with. He also ordered a PET scan to be sure this was my only active cancer. 25 nuke sessions with no real side effects later, and I was done for a while. Started treatment for multiple myeloma in September of 2014.
Your experience may differ, but it sounds like we have a similar situation. In both our cases, the radiation will be directed far away from any area that might result in unpleasant side effects. Mine was in a rib, and all I got was a sun burn spot on my skin and a slight amount of fatigue. In your case, the little monster being in your femur, well, that is like being on the moon or somewhere remote like that.
Good luck,
Charlie (grouchy German)
I had a plasmacytoma in a rib back in 2011 before I developed multiple myeloma. The doctor did a CT-guided biopsy of the growth before surgery to be sure of what they were dealing with. He also ordered a PET scan to be sure this was my only active cancer. 25 nuke sessions with no real side effects later, and I was done for a while. Started treatment for multiple myeloma in September of 2014.
Your experience may differ, but it sounds like we have a similar situation. In both our cases, the radiation will be directed far away from any area that might result in unpleasant side effects. Mine was in a rib, and all I got was a sun burn spot on my skin and a slight amount of fatigue. In your case, the little monster being in your femur, well, that is like being on the moon or somewhere remote like that.
Good luck,
Charlie (grouchy German)
-
Grizlump - Name: Charlie
- Who do you know with myeloma?: me
- When were you/they diagnosed?: June 2014
- Age at diagnosis: 67
Re: Solitary plasmacytoma: post-treatment evaluation timing?
Thanks, Charlie. You don't seem so grumpy to me. 
That's comforting information to have. Do you remember how long after treatment you got a scan to confirm that the treatment worked? And did you have a biopsy post-treatment as well?
Wishing you all the best with your treatment and health.
Thanks,
Stewie
That's comforting information to have. Do you remember how long after treatment you got a scan to confirm that the treatment worked? And did you have a biopsy post-treatment as well?
Wishing you all the best with your treatment and health.
Thanks,
Stewie
Re: Solitary plasmacytoma: post-treatment evaluation timing?
Stewie,
One of the worst things about getting old (except for cancer) is a failing memory. As I recall, an x-ray a few months after my radiation treatments showed all was well and that was the end of that story. There never was a follow up biopsy.
Things get a little convoluted because I was also dealing with a somewhat rare disease called retroperitoneal fibrosis at the same time. That cost me a kidney, which I wish I had back now that this damned myeloma has started affecting my kidney function.
Charlie
One of the worst things about getting old (except for cancer) is a failing memory. As I recall, an x-ray a few months after my radiation treatments showed all was well and that was the end of that story. There never was a follow up biopsy.
Things get a little convoluted because I was also dealing with a somewhat rare disease called retroperitoneal fibrosis at the same time. That cost me a kidney, which I wish I had back now that this damned myeloma has started affecting my kidney function.
Charlie
-
Grizlump - Name: Charlie
- Who do you know with myeloma?: me
- When were you/they diagnosed?: June 2014
- Age at diagnosis: 67
Re: Solitary plasmacytoma: post-treatment evaluation timing?
Hello Stewie!
I've been diagnosed with solitary plasmacytoma of bone two times.
In 2009, I had a pathological fracture of my left femur. At that time they took biopsies from the tumour and from my hip bone. I only had monoclonal plasma cells in the tumour itself. The "general bone marrow biopsy" didn't reveal any signs of disease. At the time of diagnosis my free light chains were normal and I didn't have an M-spike. The treatment was orthopedic surgery and 25 rounds of radiation. The follow up consisted of blood and urine tests every third month and plain x-rays. They didn't go for a new biopsy at the site of the tumour.
In 2011 spring time I was diagnosed with a solitary plasmacytoma in vertebra L1. Again the general bone marrow biopsy was free from signs of disease. I had a low M-spike but the free light chains were normal. The treatment was again orthopedic surgery and 25 rounds of radiation. Follow up similar, but I also did full body MRI and contrast CT. Nothing pointed in the direction of multiple myeloma.
In the fall of 2013 I started to get abdominal pain. MRI and CT revealed several extramedullary plasmacytomas. The largest (8-9 cm diameter) situated between my pancreas and gastric ventricle. I think I had four more smaller ones. At that time my m-spike was close to 30 g/l (3.0 g/dL). The diagnosis hence multiple myeloma.
I was treated with four rounds of Velcade, cyclophosphamide, and dexamethasone followed by high-dose chemotherapy and an autologous stem cell transplant. 100 days post transplant I went trough consolidation therapy: two rounds of Velcade, Revlimid, and dexamethasone. Then another 25 rounds of radiation. I also had IV bisphosphonates every second month for a year and a half.
I'm in stringent complete response since September 2014. The follow up is blood and urine tests every second month. I've also done a couple of MRI and CT scans. Everything looks just fine. I work full time, I have no pain, and have no trouble running, playing tennis, biking. I'm off medication since 2015 and feel great. I live in Sweden.
Good luck with your treatment!
Best regards.
Mattias
I've been diagnosed with solitary plasmacytoma of bone two times.
In 2009, I had a pathological fracture of my left femur. At that time they took biopsies from the tumour and from my hip bone. I only had monoclonal plasma cells in the tumour itself. The "general bone marrow biopsy" didn't reveal any signs of disease. At the time of diagnosis my free light chains were normal and I didn't have an M-spike. The treatment was orthopedic surgery and 25 rounds of radiation. The follow up consisted of blood and urine tests every third month and plain x-rays. They didn't go for a new biopsy at the site of the tumour.
In 2011 spring time I was diagnosed with a solitary plasmacytoma in vertebra L1. Again the general bone marrow biopsy was free from signs of disease. I had a low M-spike but the free light chains were normal. The treatment was again orthopedic surgery and 25 rounds of radiation. Follow up similar, but I also did full body MRI and contrast CT. Nothing pointed in the direction of multiple myeloma.
In the fall of 2013 I started to get abdominal pain. MRI and CT revealed several extramedullary plasmacytomas. The largest (8-9 cm diameter) situated between my pancreas and gastric ventricle. I think I had four more smaller ones. At that time my m-spike was close to 30 g/l (3.0 g/dL). The diagnosis hence multiple myeloma.
I was treated with four rounds of Velcade, cyclophosphamide, and dexamethasone followed by high-dose chemotherapy and an autologous stem cell transplant. 100 days post transplant I went trough consolidation therapy: two rounds of Velcade, Revlimid, and dexamethasone. Then another 25 rounds of radiation. I also had IV bisphosphonates every second month for a year and a half.
I'm in stringent complete response since September 2014. The follow up is blood and urine tests every second month. I've also done a couple of MRI and CT scans. Everything looks just fine. I work full time, I have no pain, and have no trouble running, playing tennis, biking. I'm off medication since 2015 and feel great. I live in Sweden.
Good luck with your treatment!
Best regards.
Mattias
-
Mattias - Name: Mattias
- Who do you know with myeloma?: Me
- When were you/they diagnosed?: Solitary plasmacytoma 2009. Myeloma 2013
- Age at diagnosis: 39
Re: Solitary plasmacytoma: post-treatment evaluation timing?
For what it's worth, the timing for yours was about the same as for mine. No bone marrow test at the plasmacytoma site; they should be able to get the info they need from the PET/CT scan.
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kemscm - Name: Kate
- Who do you know with myeloma?: Me (possibly)
- When were you/they diagnosed?: In process
- Age at diagnosis: 63
Re: Solitary plasmacytoma: post-treatment evaluation timing?
Hi Stewie,
I was diagnosed with a solitary plasmacytoma in my sacrum (bone where several nerves exit below spinal column) on June 22, 2017. It was 5 cm x 4.8 cm, and I had an M spike of 32% and free light chain ratio of 8.25. I had 48 gy radiation over 23 sessions and finished on August 2. I had a follow- up PET CT on September 25 (clear), and I am due for another follow up PET in April.
I feel good except for neuropathy and accompanying pain in left foot from nerve damage. Have resumed most activities except for ice hockey, which I am still holding out hope for at some point.
Sorry to hear of your diagnosis, but glad to know there are others like me out there.
I hope everything is going well for you. Let me know how you are doing post radiation.
HR
I was diagnosed with a solitary plasmacytoma in my sacrum (bone where several nerves exit below spinal column) on June 22, 2017. It was 5 cm x 4.8 cm, and I had an M spike of 32% and free light chain ratio of 8.25. I had 48 gy radiation over 23 sessions and finished on August 2. I had a follow- up PET CT on September 25 (clear), and I am due for another follow up PET in April.
I feel good except for neuropathy and accompanying pain in left foot from nerve damage. Have resumed most activities except for ice hockey, which I am still holding out hope for at some point.
Sorry to hear of your diagnosis, but glad to know there are others like me out there.
I hope everything is going well for you. Let me know how you are doing post radiation.
HR
7 posts
• Page 1 of 1