My brother 27 and was diagnosed a few months ago with a 6 cm plasmacytoma in his sacrum. He had 5000 radiation over 25 sessions and just got his PET results that show the tumor was completely unchanged by radiation. We are devastated.
The doctor stated that this is unusual and is sending him to a myeloma specialist. He is in a lot of pain and we are scared since treatment is not working.
What are the next steps likely to be? If they include myeloma treatment, will it reduce the plasmacytoma? Is surgery an option even tho that would be extremely difficult given the location?
Any advice is greatly appreciated.
Forums
7 posts
• Page 1 of 1
Re: Plasmacytoma unresponsive to radiation: next steps?
Hi Slcxc8,
Sorry to hear about your brother's situation. To be clear, it sounds like he was diagnosed and treated for a solitary plasmacytoma (SP) of the bone?
You may want to read through the book chapter that I've referenced below, especially the section on surgery and the last paragraph in the section on adjuvant chemotherapy
The drug treatments that are now available for multiple myeloma are nothing like what you may think of when it comes to old-school chemotherapy (i.e. losing all of you hair, vomiting, etc) and are much kinder. There are many possible drugs and drug combinations that can be used to treat your brother's condition. Successful drug treatment will eliminate the cancerous process in his spinal plasmacytoma. After successful treatment, the active cancer cells in the area around the plasmacytoma should be pretty much wiped out, but there will be some residual bone damage that may or may not slowly "heal over" with time.
The most important thing your brother can do at this stage is to find a myeloma specialist. If you let us know where your brother lives, folks on this forum can suggest some facilities with myeloma specialists to seek out in his area.
Good luck and let us know how things turn out.
Reference:
Tandon, N, and Kumar, SK, "Plasmacytoma – Current Approach to Diagnosis and Management," in Zimmerman, TM, and Kumar, SK, Biology and Management of Unusual Plasma Cell Dyscrasias, New York: Springer, 2017 (overview of chapter; full text of chapter [PDF])
Abstract:
About 3–5 % of patients with plasma cell dyscrasias present with either a single bone lesion, or less commonly, a soft tissue mass made up of monoclonal plasma cells without evidence of bone marrow involvement or end-organ damage known as a solitary plasmacytoma (SP). SP of bone mostly occurs in axial skeleton, while it most often affects the head and neck region in case of extramedullary tumors. Their median age is 55 years and mostly present with bony pain, spinal cord, or nerve root compression. A whole body (WB) or spine and pelvic magnetic resonance imaging (MRI) scan or WB fluorodeoxyglucose-positron emission tomography (FDG–PET) scan should be included in staging of these patients. The standard of care for SP is radiotherapy (RT) given with curative intent. Surgery may be required for patients with retropulsed bone, structural instability of the bone, or rapidly progressive neurological symptoms from spinal cord compression. The role of adjuvant RT after complete surgical resection, adjuvant chemotherapy, or adjuvant bisphosphonates is not well defined and hence not recommended.
Sorry to hear about your brother's situation. To be clear, it sounds like he was diagnosed and treated for a solitary plasmacytoma (SP) of the bone?
You may want to read through the book chapter that I've referenced below, especially the section on surgery and the last paragraph in the section on adjuvant chemotherapy
The drug treatments that are now available for multiple myeloma are nothing like what you may think of when it comes to old-school chemotherapy (i.e. losing all of you hair, vomiting, etc) and are much kinder. There are many possible drugs and drug combinations that can be used to treat your brother's condition. Successful drug treatment will eliminate the cancerous process in his spinal plasmacytoma. After successful treatment, the active cancer cells in the area around the plasmacytoma should be pretty much wiped out, but there will be some residual bone damage that may or may not slowly "heal over" with time.
The most important thing your brother can do at this stage is to find a myeloma specialist. If you let us know where your brother lives, folks on this forum can suggest some facilities with myeloma specialists to seek out in his area.
Good luck and let us know how things turn out.
Reference:
Tandon, N, and Kumar, SK, "Plasmacytoma – Current Approach to Diagnosis and Management," in Zimmerman, TM, and Kumar, SK, Biology and Management of Unusual Plasma Cell Dyscrasias, New York: Springer, 2017 (overview of chapter; full text of chapter [PDF])
Abstract:
About 3–5 % of patients with plasma cell dyscrasias present with either a single bone lesion, or less commonly, a soft tissue mass made up of monoclonal plasma cells without evidence of bone marrow involvement or end-organ damage known as a solitary plasmacytoma (SP). SP of bone mostly occurs in axial skeleton, while it most often affects the head and neck region in case of extramedullary tumors. Their median age is 55 years and mostly present with bony pain, spinal cord, or nerve root compression. A whole body (WB) or spine and pelvic magnetic resonance imaging (MRI) scan or WB fluorodeoxyglucose-positron emission tomography (FDG–PET) scan should be included in staging of these patients. The standard of care for SP is radiotherapy (RT) given with curative intent. Surgery may be required for patients with retropulsed bone, structural instability of the bone, or rapidly progressive neurological symptoms from spinal cord compression. The role of adjuvant RT after complete surgical resection, adjuvant chemotherapy, or adjuvant bisphosphonates is not well defined and hence not recommended.
-
Multibilly - Name: Multibilly
- Who do you know with myeloma?: Me
- When were you/they diagnosed?: Smoldering, Nov, 2012
Re: Plasmacytoma unresponsive to radiation: next steps?
Slcxc8,
I would recommend that your brother should see a neurosurgeon or an orthopaedic surgeon who has completed a spine-fellowship, preferable at a university-affiliated hospital which sees these type of conditions more often.
I would recommend that your brother should see a neurosurgeon or an orthopaedic surgeon who has completed a spine-fellowship, preferable at a university-affiliated hospital which sees these type of conditions more often.
-
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: Plasmacytoma unresponsive to radiation: next steps?
Hi Sicxc8,
I had an 8 cm plasmacytoma on my neck and had a cervical corpectomy with an autograft for C6 and C7. This was in December of 2012.
When the neurologist saw my MRI and the tumor, he didn't know what kind of cancer I had, but I was close to getting paralyzed if something wouldn't be done quickly. The end of February, after much research, I decided on low-grade radiation and only 5 or 6 times, as my surgeon had told me, he most likely wasn't able to get all the cancer out. Sometime in April I followed with Revlimid and dexamethasone treatment for myeloma as I had a pretty high M-spike (my total IgG was over 7000 mg/dL).
I am 3 1/2 years medication free. I would assume, as mentioned by another member, that your brother would be best off to see a neurologist.
Kate
I had an 8 cm plasmacytoma on my neck and had a cervical corpectomy with an autograft for C6 and C7. This was in December of 2012.
When the neurologist saw my MRI and the tumor, he didn't know what kind of cancer I had, but I was close to getting paralyzed if something wouldn't be done quickly. The end of February, after much research, I decided on low-grade radiation and only 5 or 6 times, as my surgeon had told me, he most likely wasn't able to get all the cancer out. Sometime in April I followed with Revlimid and dexamethasone treatment for myeloma as I had a pretty high M-spike (my total IgG was over 7000 mg/dL).
I am 3 1/2 years medication free. I would assume, as mentioned by another member, that your brother would be best off to see a neurologist.
Kate
-
Kate - Name: Kate
- Who do you know with myeloma?: myself
- When were you/they diagnosed?: Dec. 2012
Re: Plasmacytoma unresponsive to radiation: next steps?
This is a topic that also interests me..
I have a plasmacytoma that was 5 cm. It was found a year ago. I had 6 weeks of radiation treatment but there was no change. It has been 8 months and still no change. My doctor says it can disappear anytime up to 3 years.
Does anyone else know anything further about this?
I have a plasmacytoma that was 5 cm. It was found a year ago. I had 6 weeks of radiation treatment but there was no change. It has been 8 months and still no change. My doctor says it can disappear anytime up to 3 years.
Does anyone else know anything further about this?
Re: Plasmacytoma unresponsive to radiation: next steps?
Darstark
Interesting that your doctor said it could take up to three years for a plasmacytoma to disappear after radiation treatment. At first, I questioned this and then I came across this article:
https://www.oncolink.org/frequently-asked-questions/cancer-treatments/radiation-therapy/how-long-after-radiation-can-tumor-keep-shrinking
The article doesn't specifically talk about myeloma-related plasmacytomas, but it seems relevant nonetheless.
Interesting that your doctor said it could take up to three years for a plasmacytoma to disappear after radiation treatment. At first, I questioned this and then I came across this article:
https://www.oncolink.org/frequently-asked-questions/cancer-treatments/radiation-therapy/how-long-after-radiation-can-tumor-keep-shrinking
The article doesn't specifically talk about myeloma-related plasmacytomas, but it seems relevant nonetheless.
-
Multibilly - Name: Multibilly
- Who do you know with myeloma?: Me
- When were you/they diagnosed?: Smoldering, Nov, 2012
Re: Plasmacytoma unresponsive to radiation: next steps?
I also read the article, but I have no evidence that a plasmacytoma can take that long. I wish there was something out there that specifically addresses this. There are many sources that indicate that around 90% can be irradiated, but nothing at all about those that cannot be. It is very frustrating to have such limited input.
7 posts
• Page 1 of 1