slee wrote:Can multiple myeloma be a non secreting type???
Yes, multiple myeloma can be non-secretory. You can find out more in the following forum discussion: https://myelomabeacon.org/forum/non-secretory-myeloma-t163.html
Forums
Re: Solitary bone plasmacytoma
Yes, multiple myeloma can be non-secretory. You can find out more in the following forum discussion: https://myelomabeacon.org/forum/non-secretory-myeloma-t163.html
Re: Solitary bone plasmacytoma
I discovered that I had a large plasmacytoma (2" x 9" irregular) on my right clavical after several years of discomfort and going to an orthopedic surgeon who sent me for an MRI. That was Jan/2010. I was treated with 30 radiation treatments to the tumor. I have erosion to the clavical, but my orthopedic said since it was non structural no surgery was needed. He then referred me to a hemotologist onc in his office who explained the connection between SBP and Multiple Myeloma. He had me return for full battery of test every 6 weeks. About June 2010 I developed pain in my left hip and MRI confirmed I had an internal plasmacytoma in my left hip. Throughout this time my bone marrow biopsy was negative, m protein in blood was negative, the only test that was positive was the free light chain test. After 6 more bone marrow biopsies I have only had one that contained cancer cells yet still at level below 10% so while the bmb may be one factor in diagnosis it is only one of many.
In July I went to a center that specializes in Multiple Myeloma and had them do a full work up. With the second plasmacytoma and high ratio on free light test they diagnosied me with Multiple Myeloma. I began treatment Sep 1, 2010 and hope to complete dual stem cell transplants and be back home permanently by February.
Ron (Age 45)
Allen, treatment
In July I went to a center that specializes in Multiple Myeloma and had them do a full work up. With the second plasmacytoma and high ratio on free light test they diagnosied me with Multiple Myeloma. I began treatment Sep 1, 2010 and hope to complete dual stem cell transplants and be back home permanently by February.
Ron (Age 45)
Allen, treatment
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baranski
Re: Solitary bone plasmacytoma
Relating to your quest for multiple myeloma info from a 10-year survivor patient's experience, I have several comments I hope you can use. Overlay them with what you know and be proactive, be "anticipatory" and let's see your prognosis go to 30-year survival, shall we?
1- The Solitary Plasmacytoma [I started with one in 1999] is only "solitary" in the literature - statistics bears this out when patients are not prematurely killed by other causes - think pneumonia, road accidents, etc.
2- Get in touch with a MM-specialist so you can have periodic advice based on local lab-work - and prospective preventive treatment - whatever. A first visit with one of the foremost multiple myeloma specialists [or whom he recommends] provides the anchor - from which you set sails so to. Of course you can afford the trip & visit because it is an investment in the future 30-years survival [we hope painless if you PRO-ACT].
3- The field of multiple myeloma treatment development is progressing rapidly - many fronts of research, many new chemos in trials - and you may have plenty of time to benefit. Be optimistic on that account alone.
4- The PSCT [peripheral stem-cell transplant] is a great "standby" survival strategy when you harvest PSC early before having many chemotherapies, while the BM [bone marrow] is uncontaminated of multiple myeloma and strong. You'll store the PSC until you need to use as a "last best resort". This is quite customary in many multiple myeloma clinics - so do it.
5- Oncologists usually don’t want to scare their patients - we appreciate that of course - and some just don't know multiple myeloma that well because they are not hematologists and have so much other fun with cancers of all types [we need to supplement that and work with them or change support to someone who really knows, if we are to survive].
6- RE spinal injury it seems to me you should already by now have had a vertebrae expansion [Kyroplasty or similar] to resolve the collapsed vertebrae.Don't delay because recovery relates to "freshness" of tissue damage [of course!].
7- Inquire about the use of Aredia or Zometa [bisphosphonates] for preventing bone destruction for a while - say 6 months or more.
8- As you know, we monitor multiple myeloma progression in several ways - keep in mind you really don't want to wait to monitor until multiple myeloma is so progressed that you can "feel it" [only ignorant medics would suggests that as you learn as you go along] - blood tests for Immunoglobolin [Ig-A, G, M, E, D], serum-Free-Light-Chain [sFLC], PET-CT scan or PET-MRI scan, and general blood balance tests [often called CBC]. Frequency is "as needed" but to be on the safe side, ask several MM-oncologists [their opinions will vary some].
9- Keep in mind that development of multiple myeloma is a result of 5 or more gene-translocations, so perhaps the radiotherapy of the solitary plasmacytoma did indeed wipe out the active multiple myeloma. Great; but the "gene disposition" is still there so that some time in the future some new translocation reactivates the multiple myeloma.
10- Consider to ask for a 3 - 6 months preventive chime-therapy to wipe out residual multiple myeloma cells [you'll assume some are hiding away outside the plasmacytoma], although most doctors may want to wait until the multiple myeloma comes back so they can treat something concrete - rational enough bur perhaps too late to avoid complications and aggravations.
11- Make sure you know which is the "serum MM-marker" [multiple myeloma spike, abnormal protein] that characterize your multiple myeloma, e.g. Ig-G [about 50% of patients], A [about 20%], M, D or E, with sFLC-kappa or lambda, or just the sFLC-k or l [18%], or none [2%] - so you can follow the test results yourself. Rely on your oncologist of course - but don't depend completely on others to keep you fully in the know.
12- The above comes with my recognition that you have several children to protect in addition to your own person and the tranquility of a wife and other family - take active responsibility for your life [whatever it takes] and you'll probably achieve double your present age, and without too much aggravation if you truly PRO-ACT, get with the learning curve based on input from an multiple myeloma specialist, prudently maintain you health, carefully monitor for the multiple myeloma recurrence, get over the disappointment to have joined the MM-club [try take it as a personal challenge to learn more and appreciate the incredible care and research made available to us during the past 10 years, e revolution benefiting your survival and QOL [quality of life]. The immune system as well as your QOL is improved by a smile, a laugh, and an optimistic attitude [scientifically proven apparently] - so let's be optimistic and make your special someone happy. [I'm male, about your father's age, educated in science, still active, 11-year multiple myeloma survivor, radiation treatments to 8 plasmacytomas in 6 years, auto-PSCT, allo-SCT in 2000, relapse 2005, 4 different chemos, 2 different clinical trials, live in Southern California, life is sweet - we make it that way ourselves by deciding it's so!
Regards,
Ebbe
1- The Solitary Plasmacytoma [I started with one in 1999] is only "solitary" in the literature - statistics bears this out when patients are not prematurely killed by other causes - think pneumonia, road accidents, etc.
2- Get in touch with a MM-specialist so you can have periodic advice based on local lab-work - and prospective preventive treatment - whatever. A first visit with one of the foremost multiple myeloma specialists [or whom he recommends] provides the anchor - from which you set sails so to. Of course you can afford the trip & visit because it is an investment in the future 30-years survival [we hope painless if you PRO-ACT].
3- The field of multiple myeloma treatment development is progressing rapidly - many fronts of research, many new chemos in trials - and you may have plenty of time to benefit. Be optimistic on that account alone.
4- The PSCT [peripheral stem-cell transplant] is a great "standby" survival strategy when you harvest PSC early before having many chemotherapies, while the BM [bone marrow] is uncontaminated of multiple myeloma and strong. You'll store the PSC until you need to use as a "last best resort". This is quite customary in many multiple myeloma clinics - so do it.
5- Oncologists usually don’t want to scare their patients - we appreciate that of course - and some just don't know multiple myeloma that well because they are not hematologists and have so much other fun with cancers of all types [we need to supplement that and work with them or change support to someone who really knows, if we are to survive].
6- RE spinal injury it seems to me you should already by now have had a vertebrae expansion [Kyroplasty or similar] to resolve the collapsed vertebrae.Don't delay because recovery relates to "freshness" of tissue damage [of course!].
7- Inquire about the use of Aredia or Zometa [bisphosphonates] for preventing bone destruction for a while - say 6 months or more.
8- As you know, we monitor multiple myeloma progression in several ways - keep in mind you really don't want to wait to monitor until multiple myeloma is so progressed that you can "feel it" [only ignorant medics would suggests that as you learn as you go along] - blood tests for Immunoglobolin [Ig-A, G, M, E, D], serum-Free-Light-Chain [sFLC], PET-CT scan or PET-MRI scan, and general blood balance tests [often called CBC]. Frequency is "as needed" but to be on the safe side, ask several MM-oncologists [their opinions will vary some].
9- Keep in mind that development of multiple myeloma is a result of 5 or more gene-translocations, so perhaps the radiotherapy of the solitary plasmacytoma did indeed wipe out the active multiple myeloma. Great; but the "gene disposition" is still there so that some time in the future some new translocation reactivates the multiple myeloma.
10- Consider to ask for a 3 - 6 months preventive chime-therapy to wipe out residual multiple myeloma cells [you'll assume some are hiding away outside the plasmacytoma], although most doctors may want to wait until the multiple myeloma comes back so they can treat something concrete - rational enough bur perhaps too late to avoid complications and aggravations.
11- Make sure you know which is the "serum MM-marker" [multiple myeloma spike, abnormal protein] that characterize your multiple myeloma, e.g. Ig-G [about 50% of patients], A [about 20%], M, D or E, with sFLC-kappa or lambda, or just the sFLC-k or l [18%], or none [2%] - so you can follow the test results yourself. Rely on your oncologist of course - but don't depend completely on others to keep you fully in the know.
12- The above comes with my recognition that you have several children to protect in addition to your own person and the tranquility of a wife and other family - take active responsibility for your life [whatever it takes] and you'll probably achieve double your present age, and without too much aggravation if you truly PRO-ACT, get with the learning curve based on input from an multiple myeloma specialist, prudently maintain you health, carefully monitor for the multiple myeloma recurrence, get over the disappointment to have joined the MM-club [try take it as a personal challenge to learn more and appreciate the incredible care and research made available to us during the past 10 years, e revolution benefiting your survival and QOL [quality of life]. The immune system as well as your QOL is improved by a smile, a laugh, and an optimistic attitude [scientifically proven apparently] - so let's be optimistic and make your special someone happy. [I'm male, about your father's age, educated in science, still active, 11-year multiple myeloma survivor, radiation treatments to 8 plasmacytomas in 6 years, auto-PSCT, allo-SCT in 2000, relapse 2005, 4 different chemos, 2 different clinical trials, live in Southern California, life is sweet - we make it that way ourselves by deciding it's so!
Regards,
Ebbe
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Anonymous
Re: Solitary bone plasmacytoma
My husband (now 58) was diagnosed with a solitary plasmacytoma in early January of this year. It originated from his fourth rib and intruded into the lung. He had 28 treatments with radiation in March and May.
About 2 weeks ago, he turned to look behind him (backing the truck up to the 5th wheel) and felt a severe pain. We called Dr McGrath (radiation oncologist) and a CT was done. Not only did he break the rib, but the mass that had been shrinking was again large.
A full body PET was then ordered with a hot spot surrounding the area noted. Right now that is all we know. We see Dr. McGrath again tomorrow to hear the full results and where we go from here.
We know the rib was weak but we did not expect it to break that easily. He is due for his next round of blood tests but we are waiting to see Dr Taber (his oncologist) till after we find out about the results from the PET. The two doctors both looked at the CT and I am sure they both looked at the PET results.
About 2 weeks ago, he turned to look behind him (backing the truck up to the 5th wheel) and felt a severe pain. We called Dr McGrath (radiation oncologist) and a CT was done. Not only did he break the rib, but the mass that had been shrinking was again large.
A full body PET was then ordered with a hot spot surrounding the area noted. Right now that is all we know. We see Dr. McGrath again tomorrow to hear the full results and where we go from here.
We know the rib was weak but we did not expect it to break that easily. He is due for his next round of blood tests but we are waiting to see Dr Taber (his oncologist) till after we find out about the results from the PET. The two doctors both looked at the CT and I am sure they both looked at the PET results.
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Jmiller - Name: Harleygirl
- Who do you know with myeloma?: My husband
- When were you/they diagnosed?: January 2014
- Age at diagnosis: 57
Re: Solitary bone plasmacytoma
I am very sorry to hear about what happened with your husband, JMiller. It's good that he's had both CT and PET scans done to see if there any signs of lesions in his bones.
Has your husband also had blood work done to test for things like elevated levels of calcium in his blood, kidney issues, or anemia? Also, have his blood (or urine) protein and/or free light chain levels been measured to see if he has any signs of myeloma?
I hope that the problem is isolated to his rib and that the doctors come up with a solution to it.
Please let us know what you find out and whether you have any questions we can answer.
Good luck!
Has your husband also had blood work done to test for things like elevated levels of calcium in his blood, kidney issues, or anemia? Also, have his blood (or urine) protein and/or free light chain levels been measured to see if he has any signs of myeloma?
I hope that the problem is isolated to his rib and that the doctors come up with a solution to it.
Please let us know what you find out and whether you have any questions we can answer.
Good luck!
Re: Solitary bone plasmacytoma
Ebbe:
Thank you for the "road-map" of a 10 yr survivor of SBP, and related issues.
I am on a similar path (I had hoped --before multiple myeloma re-appeared ) and I appreciate the information and nuggets of analysis.
Regards,
Thank you for the "road-map" of a 10 yr survivor of SBP, and related issues.
I am on a similar path (I had hoped --before multiple myeloma re-appeared ) and I appreciate the information and nuggets of analysis.
Regards,
-
Rneb
Re: Solitary bone plasmacytoma
My husbands PET scan came back with no new areas but the one on his 4th rib was back to it pre radiation size. He had a biopsy again one week ago and it is positive. They are having him see a specialist at the University of Chicago Medical Center. Surgical removal the rib and the tumor is the next step. We are waiting to here back on when we can see the specialist for an appointment. Hurry up and wait seems to be our way of life now. He did have lab work and a bone marrow biopsy early on. There were some abnormalities but very limited. He is due for repeat urine and blood work but we are waiting to see what happens with the specialist.
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Jmiller - Name: Harleygirl
- Who do you know with myeloma?: My husband
- When were you/they diagnosed?: January 2014
- Age at diagnosis: 57
Re: Solitary bone plasmacytoma
My mom was diagnosed with a solitary bone plasmacytoma at the end of April after consulting her doctor about pain in her ribs and back in October 2013, February this year, and again in April. She has had 10 radiation treatments and her doctors are now going to "watch and see."
Well, when she was in her "lab rat" phase, I researched as much as I could about multiple myeloma, which is what her doctors initially told her she "might" have. Currently, her kappa free light chains are elevated, which of course kicks up her kappa/lambda ratio, and there are several other abnormalities or "markers" reflected on her labs. Granted, from an multiple myeloma perspective, her numbers look good, but she hasn't been diagnosed with multiple myeloma.
I don't understand the idea of waiting for her to progress to multiple myeloma to treat her. I took her labs and scans to another group of hematology oncologists for a second opinion. The doctors there want to see us. I'm hoping for adjuvant chemotherapy, because my gut is just telling me that there is more than her current doctors are telling us.
I guess I'm saying, it's always worth getting a 2nd opinion. Maybe her current doctors are great, but maybe this next bunch is better. I figure the worst that will come of this is that I'm wrong, which is probably the only time in my life I want to be.
Well, when she was in her "lab rat" phase, I researched as much as I could about multiple myeloma, which is what her doctors initially told her she "might" have. Currently, her kappa free light chains are elevated, which of course kicks up her kappa/lambda ratio, and there are several other abnormalities or "markers" reflected on her labs. Granted, from an multiple myeloma perspective, her numbers look good, but she hasn't been diagnosed with multiple myeloma.
I don't understand the idea of waiting for her to progress to multiple myeloma to treat her. I took her labs and scans to another group of hematology oncologists for a second opinion. The doctors there want to see us. I'm hoping for adjuvant chemotherapy, because my gut is just telling me that there is more than her current doctors are telling us.
I guess I'm saying, it's always worth getting a 2nd opinion. Maybe her current doctors are great, but maybe this next bunch is better. I figure the worst that will come of this is that I'm wrong, which is probably the only time in my life I want to be.
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Lisa W
Re: Solitary bone plasmacytoma
Lisa:
Exactly what treatment should they be providing...and where ??
If her multiple myeloma markers are good, what is wrong with kicking the can down the street, until active multiple myeloma can be detected ? ( and a location to treat identified ?)
Radiation is the standard of care for SBP -- so where does she radiate ? PET scan--what are the indications for ordering one ? Elevated M Spike, etc are required for chemo--Who is going to order chemo for essentially, a "Well Woman" ?
I'm sorry you are in "limbo", but there are well researched articles re: progression from SBP. Some patients just never develop multiple myeloma. It's a "wait and See" situation.
FIRST, DO NO HARM...is at play , here.
Treatment for multiple myeloma is not much fun--so perhaps wait until the patient is actually sick ??
Good Luck.
Exactly what treatment should they be providing...and where ??
If her multiple myeloma markers are good, what is wrong with kicking the can down the street, until active multiple myeloma can be detected ? ( and a location to treat identified ?)
Radiation is the standard of care for SBP -- so where does she radiate ? PET scan--what are the indications for ordering one ? Elevated M Spike, etc are required for chemo--Who is going to order chemo for essentially, a "Well Woman" ?
I'm sorry you are in "limbo", but there are well researched articles re: progression from SBP. Some patients just never develop multiple myeloma. It's a "wait and See" situation.
FIRST, DO NO HARM...is at play , here.
Treatment for multiple myeloma is not much fun--so perhaps wait until the patient is actually sick ??
Good Luck.
-
Rneb
Re: Solitary bone plasmacytoma
Lisa,
I think getting a second opinion from a good myeloma specialist is always invaluable and it's good to be asking the questions you are. I would be very curious to hear what the other group of doctors have to say.
I think getting a second opinion from a good myeloma specialist is always invaluable and it's good to be asking the questions you are. I would be very curious to hear what the other group of doctors have to say.
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Multibilly - Name: Multibilly
- Who do you know with myeloma?: Me
- When were you/they diagnosed?: Smoldering, Nov, 2012
25 posts
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