Hello
You can read a bit about my history in the thread multiple myeloma on the topic "scared". Anyway, It's a month since my back surgery and the recovery is well beyond my expectations! No pain at all and I'm in fact able to run again though my physio therapist tells me not to. I do know that my titanium implants require more time to osseointegrate so no more running - I just had to try.
Now something strange but what I believe is good news. I went to see my oncologist for information prior to radiation of my L1 vertebra. I asked him if he could check my medical journal for the results of my bone marrow biopsy and cytogenetic tests. (Unfortunately my hematologist in charge of the tests is on vacation). My oncologist told me that no chromosomal or genetic alterations were found. On top of that the bone marrow biopsy came back normal! No signs of myeloma or elevated numbers of plasma cells.
My questions are:
1 Do I really have multiple myeloma or should this be regarded as a new solitary plasmacytoma? (left femur without m spike dec 2009, vertebra L1 m spike 8 may 2011. All other parameters in blood and urine within normal range)
2 Hence the question above and my low risk profile - do I really need chemo and auto SCT or is radiation and wait and see enough?
3 This is my second round of radiation therapy. Is it possible that collection of stem cells will be dramatically impaired ?
I hope someone on the forum can help me with information until my hematologist vacation is over.
Best regards from a rainy Sweden// Mattias
Forums
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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: So far so good
Hello Matias,
Recurrent solitary plasmacytoma is not unusual. The lack of plasma cellls on the bone marrow biopsy means that you do not have multiple myeloma at this time. Local definitive radiation is the standard of care for patients with solitary plasmacytoma.Your elevated m-spike suggests that you are at a higher risk for progression to myeloma in the next 5 years. Your hematologist may consider performing total body MRI and/or PET scanning to rule out other lesions that can be missed by the standard skeletal survey. In general, if a patient with a solitary plasmacytoma does not have evidence of symptomatic multiple myeloma (anemia, kidney failure, hypercalcemia,infections, plasma cells > or = 10% on bone marrow biopsy) one would not treat with chemotherapy/transplant. It is possible that future collection of stem cells could be impaired by two rounds of radiation but there is not alternative to the radiation. I would be a little more worried about stem cell collection in the radiation was to your pelvis (the pelvic bones are a very large reservoir of bone marrow/stem cells). Overall this appears to be good news for you. It is important that you be followed closely for progression to symptomatic myeloma.
Recurrent solitary plasmacytoma is not unusual. The lack of plasma cellls on the bone marrow biopsy means that you do not have multiple myeloma at this time. Local definitive radiation is the standard of care for patients with solitary plasmacytoma.Your elevated m-spike suggests that you are at a higher risk for progression to myeloma in the next 5 years. Your hematologist may consider performing total body MRI and/or PET scanning to rule out other lesions that can be missed by the standard skeletal survey. In general, if a patient with a solitary plasmacytoma does not have evidence of symptomatic multiple myeloma (anemia, kidney failure, hypercalcemia,infections, plasma cells > or = 10% on bone marrow biopsy) one would not treat with chemotherapy/transplant. It is possible that future collection of stem cells could be impaired by two rounds of radiation but there is not alternative to the radiation. I would be a little more worried about stem cell collection in the radiation was to your pelvis (the pelvic bones are a very large reservoir of bone marrow/stem cells). Overall this appears to be good news for you. It is important that you be followed closely for progression to symptomatic myeloma.
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Dr. Edward Libby - Name: Edward Libby, M.D.
Beacon Medical Advisor
Re: So far so good
Dr Libby!
Thank you for taking time and answering my questions. I will discuss your opinions with my hematologist after I'm done with the radiation. I feel relieved after getting the good results of the biopsy and your answers. // Mattias
Thank you for taking time and answering my questions. I will discuss your opinions with my hematologist after I'm done with the radiation. I feel relieved after getting the good results of the biopsy and your answers. // Mattias
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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: So far so good
Hello
I had an appointment today with my hematologist. She told me that though they initially diagnosed me with multiple myeloma after my L1 plasmacytoma and m-spike at 8. The X-rays, MRI and CT scans revealed no other lesions. On top of that she confirmed the good results of the bonemarrow biopsy and cytogenetics. (No signs of elevated numbers of plasmacells and no genetic alteratons). I´m 5 days into radiation and so far it´s just fine. No side effects yet, but they will come.....The really good news is that I for the moment doesn´t have to go through chemo and auto SCT. They will check me up every 3 months regarding blood and urine. I´m still at higher risk progressing to multiple myeloma, but that is nothing new to me. I´m very grateful for every day of "health" and hope that it will take a long time before, or I get multiple myeloma. Lots of regards from a sunny Sweden. // Mattias
I had an appointment today with my hematologist. She told me that though they initially diagnosed me with multiple myeloma after my L1 plasmacytoma and m-spike at 8. The X-rays, MRI and CT scans revealed no other lesions. On top of that she confirmed the good results of the bonemarrow biopsy and cytogenetics. (No signs of elevated numbers of plasmacells and no genetic alteratons). I´m 5 days into radiation and so far it´s just fine. No side effects yet, but they will come.....The really good news is that I for the moment doesn´t have to go through chemo and auto SCT. They will check me up every 3 months regarding blood and urine. I´m still at higher risk progressing to multiple myeloma, but that is nothing new to me. I´m very grateful for every day of "health" and hope that it will take a long time before, or I get multiple myeloma. Lots of regards from a sunny Sweden. // Mattias
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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: So far so good
Wondeful news , we spoke on your other thread. I finished my stem cell collection yesterday and the transplant starts Set. 19.. I must admit to being a bit envious.
Make sure you celebrate the good news, friend.
Bob
Calgary, Canada
Make sure you celebrate the good news, friend.
Bob
Calgary, Canada
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Canuck Bob - Name: Bob
- Who do you know with myeloma?: Myself
- When were you/they diagnosed?: Feb. 2011
- Age at diagnosis: 57
Re: So far so good
Hello Bob
I hope your upcoming treatment will work out just fine. My father is going through his second auto SCT right now so I have some knowledge of what you are about to experience. He had a year with vgpr before the m spike started to rise. None of his lesions progressed though. He responded well on Revlimid and Dexamethason and prior to his second SCT his m spike was lower than before his first SCT. I know that I have been extremely lucky. My treatment has worked perfect. My back is fine and no m spike detectable after surgery of the plasmacytoma and subsequent radiation of my back. Good luck with your treatment Bob and keep us updated. Your friend Mattias
I hope your upcoming treatment will work out just fine. My father is going through his second auto SCT right now so I have some knowledge of what you are about to experience. He had a year with vgpr before the m spike started to rise. None of his lesions progressed though. He responded well on Revlimid and Dexamethason and prior to his second SCT his m spike was lower than before his first SCT. I know that I have been extremely lucky. My treatment has worked perfect. My back is fine and no m spike detectable after surgery of the plasmacytoma and subsequent radiation of my back. Good luck with your treatment Bob and keep us updated. Your friend Mattias
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Mattias - Name: Mattias
- Who do you know with myeloma?: Me
- When were you/they diagnosed?: Solitary plasmacytoma 2009. Myeloma 2013
- Age at diagnosis: 39
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