I had a solitary plasmacytoma in my hip which caused my hip to fracture about 4 1/2 yrs ago. I was treated with radiation only from my hip to my knee because due to the rod that had to be put in my femur to secure my hip they could have possibly pushed cancer cells down my leg.
I have had increased pain in my leg recently & went to orthopedic dr. He did x-rays & nuclear bone scan & has come to the conclusion that there is some sort of activity going on in my leg as well as one of my ribs which I have been having bad pain in that area as well. Orthopedic dr believes it to be cancer. He ordered a skeletal survey to be done Mon. & I am to follow up & receive the results from my cancer dr the following week.
I have been in remission for 4 yrs & my blood numbers counts have been great this whole time. They actually were never high even when I had my plasmacytoma yrs ago. Cancer dr had said if I ever got cancer in this leg again I would not be able to receive any more radiation due to the amount I received earlier.
If I do really have cancer again in this leg, how would they treat it? Chemo? Also, is it possible to have a plasmacytoma in two places at the same time & not have it be multiple myeloma? I am really confused about all of this & don't see my cancer dr until the 5th so I was wondering if anyone has any idea's about what & where I will go from here if I truly do have cancer back.
Also is it possible to have multiple myeloma & your blood & urine counts show nothing abnormal?
Thanks for any knowledge anyone can provide, I love this site & have been reading it a lot lately. I get confused about so much of what I read but every time I pick up a little & learn something new.
Thanks for any insight on this,
Terri
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10 posts
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Re: Radiation? As well as other questions ... Grrr
Hello Sunshine,
It is possible to develop a second solitary plasmacytoma at a different site. If you have a new solitary plasmacytoma it may or may not be treatable with radiation. If it has grown in the area that was previously radiated you cannot get more radiation to that region. If it has grown outside the previous radiation field then it could be radiated.
Even after definitive radiation a significant number of patients go on to develop symptomatic multiple myeloma years later. If you now have symptomatic multiple myeloma the treatment will be chemotherapy with or without a stem cell transplant.
It is possible to have symptomatic myeloma with normal blood counts, SPEP and serum free light chains but uncommon. If your doctors suspect myeloma then you need to be restaged with a bone marrow biopsy, SPEP, serum free light chains, skeletal survey, calcium level and blood counts.
Thank you for sharing your interesting question with the Beacon and its readers!
It is possible to develop a second solitary plasmacytoma at a different site. If you have a new solitary plasmacytoma it may or may not be treatable with radiation. If it has grown in the area that was previously radiated you cannot get more radiation to that region. If it has grown outside the previous radiation field then it could be radiated.
Even after definitive radiation a significant number of patients go on to develop symptomatic multiple myeloma years later. If you now have symptomatic multiple myeloma the treatment will be chemotherapy with or without a stem cell transplant.
It is possible to have symptomatic myeloma with normal blood counts, SPEP and serum free light chains but uncommon. If your doctors suspect myeloma then you need to be restaged with a bone marrow biopsy, SPEP, serum free light chains, skeletal survey, calcium level and blood counts.
Thank you for sharing your interesting question with the Beacon and its readers!
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Dr. Edward Libby - Name: Edward Libby, M.D.
Beacon Medical Advisor
Re: Radiation? As well as other questions ... Grrr
Thank you Dr Libby for answering my questions. I will have the skeletal survey done tomorrow & I get my serum free light chains & other blood tests done monthly. The blood tests all seem to be normal so far.
Love your site & appreciate both the Doctor's & patients info they share.
Love your site & appreciate both the Doctor's & patients info they share.
Re: Radiation? As well as other questions ... Grrr
Sunshine,
When you present with a second plasmocytoma even with other parameters being within normal range you are considered to have Stage 1 Multiple Myeloma. With Stage 1 multiple myeloma you should be treated with biologicals/ chemo. and radiation at the site of the plasmocytoma.
Even though you may not be secreting high levels of m-protein and your Bone Marrow is clean the fact that you have more than one plasmocytoma places you in the multiple myeloma category and you should be treated as if you have Stage 1 multiple myeloma.
My partner has a similar situation to your situation and has been diagnosised with Stage 1 multiple myeloma. She has been seen at Dana Faber and at Sloan Kettering and both places agree with the Dx. of Stage 1 multiple myeloma.
She was treated with radiation at the sites of her plasmocytomas and then with RVD (Revlimid, Velcade, Dexamethasone) which put her in complete remission (CR). She underwent a stem cell harvest and we are trying to decide when to get the stem cell transplant. She has continued on Velcade sq maintenance treatment. and Zometa and has not had any recurrence. She is considered to have an oligosecretory form of multiple myeloma (http://www.nejm.org/doi/full/10.1056/NEJMc1206740)
We are following labs ( m-protein, free light chain etc) (but realize that this may not be a true indicator of dx. advancement) and also MRI scans when bone pain presents. It has been really difficult to deal with this form of multiple myeloma because the traditional markers are all normal. The reality is despite the traditional marker being normal in the past Amy still developed multiple plasmocytomas. I would definitely go "full press" with your disease and don't get lulled into thinking you don't have multiple myeloma. According to the staging system and most experts I have talked to you do have multiple myeloma. If it was just one plasmocytoma then yes it is considered a solitary plasmocytoma only but with a second lytic lesion this changes the staging and therefore the treatment plan.
Sincerely,
Joe Connor
When you present with a second plasmocytoma even with other parameters being within normal range you are considered to have Stage 1 Multiple Myeloma. With Stage 1 multiple myeloma you should be treated with biologicals/ chemo. and radiation at the site of the plasmocytoma.
Even though you may not be secreting high levels of m-protein and your Bone Marrow is clean the fact that you have more than one plasmocytoma places you in the multiple myeloma category and you should be treated as if you have Stage 1 multiple myeloma.
My partner has a similar situation to your situation and has been diagnosised with Stage 1 multiple myeloma. She has been seen at Dana Faber and at Sloan Kettering and both places agree with the Dx. of Stage 1 multiple myeloma.
She was treated with radiation at the sites of her plasmocytomas and then with RVD (Revlimid, Velcade, Dexamethasone) which put her in complete remission (CR). She underwent a stem cell harvest and we are trying to decide when to get the stem cell transplant. She has continued on Velcade sq maintenance treatment. and Zometa and has not had any recurrence. She is considered to have an oligosecretory form of multiple myeloma (http://www.nejm.org/doi/full/10.1056/NEJMc1206740)
We are following labs ( m-protein, free light chain etc) (but realize that this may not be a true indicator of dx. advancement) and also MRI scans when bone pain presents. It has been really difficult to deal with this form of multiple myeloma because the traditional markers are all normal. The reality is despite the traditional marker being normal in the past Amy still developed multiple plasmocytomas. I would definitely go "full press" with your disease and don't get lulled into thinking you don't have multiple myeloma. According to the staging system and most experts I have talked to you do have multiple myeloma. If it was just one plasmocytoma then yes it is considered a solitary plasmocytoma only but with a second lytic lesion this changes the staging and therefore the treatment plan.
Sincerely,
Joe Connor
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joe
Re: Radiation? As well as other questions ... Grrr
Hi Terri.
Amy here - I'm the partner that Joe mentions in the previous message, with "Oligo-Plasmacytomas." As you know, this is a rare multiple myeloma variant. I was diagnosed in May of 2011 at age 45. Since then, I've had 7 plasmacytomas treated with 5 rounds of radiation (150 gy total), between June 2011 and Feb. 2012. Locations include Clavicle, Sternum, C2, Acromion, Humerus and Pateller. It's been like a horror movie in a way, with a broken sternum and fractured C2. Finally, I went on RVD (8 cycles - completed in Sept. 2012. I've had a very good response to all of my treatments and reached CR after 2 cycles. In November of 2012, I went and had my stem cells collected at Memorial Sloan Kettering, where 10 million of them sit in a freezer, waiting for ASCT. In a nutshell, I'm doing very well and hope it lasts for a while. I'm on maintenance therapy of Velcade (Sub-Q injections/ 2.125 mg) every two weeks + Zometa infusion every other month.
Similar to you, my labs are normal, but I did have an M-protein of about 1.07 g/dL at diagnosis, so hence the "Oligo" designation. Otherwise, SFLC, B2M, all bone biopies, SPEP, UPEP, skeletal survey (a total waste with this particular type of disease) - PET/ CT's - all normal. The only exception with the PET/CT (I've had 3 to date), is that with two of them I had one plasmacytoma that I already knew about at the time, because it hurt. They can only see them when they're 1cm or larger, so it's important to pay close attention to the pain.
So many unanswered questions and such a complex disease with so many differing opinions about how to treat.......To date, my life has remained fairly normal in spite ot this mess. I work full-time and have two boys (18 and 14), as well as my partner Joe. Other than being more tired (could also be middle age
and my feet hurthing from the Velcade, I'm feeling pretty good. I'm taking a break now from "the drama," getting my oldest off to college and pondering when to do the ASCT. I really don't want to and my hope has been that the drugs will someday eliminate the need to go through with it, but was told by two of my Docs to go ahead and strike it hard now, while I'm young. Meanwhile, the Velcade seems to be working and at least the cells are there waiting. So - lots to think about!
Anyway - I offer my support to you as you navigate the process, as I will be doing for the rest of my life. Staying on the pulse is important. I recommend you get as aggressive about your care as possible, track everything closely and see the experts if you can -- Richardson, Rajkumar and several others. At least they may have seen one or two patients like us. Richardson has one who's now 8 or 9 years out in remission and on Velcade only. There's always hope..................
Amy here - I'm the partner that Joe mentions in the previous message, with "Oligo-Plasmacytomas." As you know, this is a rare multiple myeloma variant. I was diagnosed in May of 2011 at age 45. Since then, I've had 7 plasmacytomas treated with 5 rounds of radiation (150 gy total), between June 2011 and Feb. 2012. Locations include Clavicle, Sternum, C2, Acromion, Humerus and Pateller. It's been like a horror movie in a way, with a broken sternum and fractured C2. Finally, I went on RVD (8 cycles - completed in Sept. 2012. I've had a very good response to all of my treatments and reached CR after 2 cycles. In November of 2012, I went and had my stem cells collected at Memorial Sloan Kettering, where 10 million of them sit in a freezer, waiting for ASCT. In a nutshell, I'm doing very well and hope it lasts for a while. I'm on maintenance therapy of Velcade (Sub-Q injections/ 2.125 mg) every two weeks + Zometa infusion every other month.
Similar to you, my labs are normal, but I did have an M-protein of about 1.07 g/dL at diagnosis, so hence the "Oligo" designation. Otherwise, SFLC, B2M, all bone biopies, SPEP, UPEP, skeletal survey (a total waste with this particular type of disease) - PET/ CT's - all normal. The only exception with the PET/CT (I've had 3 to date), is that with two of them I had one plasmacytoma that I already knew about at the time, because it hurt. They can only see them when they're 1cm or larger, so it's important to pay close attention to the pain.
So many unanswered questions and such a complex disease with so many differing opinions about how to treat.......To date, my life has remained fairly normal in spite ot this mess. I work full-time and have two boys (18 and 14), as well as my partner Joe. Other than being more tired (could also be middle age
and my feet hurthing from the Velcade, I'm feeling pretty good. I'm taking a break now from "the drama," getting my oldest off to college and pondering when to do the ASCT. I really don't want to and my hope has been that the drugs will someday eliminate the need to go through with it, but was told by two of my Docs to go ahead and strike it hard now, while I'm young. Meanwhile, the Velcade seems to be working and at least the cells are there waiting. So - lots to think about! Anyway - I offer my support to you as you navigate the process, as I will be doing for the rest of my life. Staying on the pulse is important. I recommend you get as aggressive about your care as possible, track everything closely and see the experts if you can -- Richardson, Rajkumar and several others. At least they may have seen one or two patients like us. Richardson has one who's now 8 or 9 years out in remission and on Velcade only. There's always hope..................
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amyeich11 - Name: Amy Eichenberger
- Who do you know with myeloma?: Myself
- When were you/they diagnosed?: May, 2011
- Age at diagnosis: 45
Re: Radiation? As well as other questions about plasmacytoma
Wow, haven't checked this site for a while Thank you for taking the time to share what you know & have gone threw. I saw the cancer Dr after my skeletal survey & he said he thinks everything still looks fine. He said don't believe any other Dr (orthopedic Dr) when they say it's probably cancer unless a cancer Dr says it. He said the other Dr's only have some of the pieces of the puzzle but not the whole thing. I might add that all the pain I was having lasted about 1 1/2 months but has now went back to normal, which no one can explain. Cancer Dr believes I am still in remission.
Skeletal survey said:
1. There are several new subcentimeter lytic lesions in the calvarium
2. Stable posttraumatic and postoperative change right femur
3. Worsening degenerative change in the lumbar spine
This was the previous test results to which the Ortho Dr ruled out infection & loose hardware.
Abnormal bone scan at the right femur. This may relate to low grade
infection, neoplasm or hardware loosening.
Right eighth rib activity, presumably related to mild trauma.
Images
Scan on 7/22/2013 8:24 AM
Scan 7/16
The possibility of chronic osteomyelitis in the region of prior mid
shaft fracture status post intramedullary rod stabilization is raised.
Took a new sort of blood test & am scheduled for a PET scan next week just to be sure.
This Dr is not a specialist in multiple myeloma he is just a local general cancer Dr that treats all kinds of cancer. My parents want me to go some where special like Mayo Clinic because of stories they have heard from friends about how they work wonders. I would like to stay as close to home as possible but want a specialist in multiple myeloma if it really is multiple myeloma. How do you know when it's time to see a specialist or if you are just getting paranoid because of mixed messages & unusual amount of pain? The more tests I have the more confused I think this is getting & as I am sure all of you know is very stressful to think about & deal with. I think they are going to give me anxiety issues or heart problems worrying before I ever get the cancer even back. Grrr
Amy Wow raising kids while going threw all of this I couldn't even imagine! Stay strong!!!
I have no kids & had my 1st plasmacytoma when I turned 45 I am 49yrs now & praying I am still in remission.
Joe & Amy, you have answered a lot of the questions that were going threw my head & I appreciate you sharing your knowledge. You will be in my thoughts & prayers.
I see there is a lot of controversy about having a stem cell transplant & was hoping by the time I ever needed on they would be obsolete??? What are your thoughts about the SCTP?
Skeletal survey said:
1. There are several new subcentimeter lytic lesions in the calvarium
2. Stable posttraumatic and postoperative change right femur
3. Worsening degenerative change in the lumbar spine
This was the previous test results to which the Ortho Dr ruled out infection & loose hardware.
Abnormal bone scan at the right femur. This may relate to low grade
infection, neoplasm or hardware loosening.
Right eighth rib activity, presumably related to mild trauma.
Images
Scan on 7/22/2013 8:24 AM
Scan 7/16
The possibility of chronic osteomyelitis in the region of prior mid
shaft fracture status post intramedullary rod stabilization is raised.
Took a new sort of blood test & am scheduled for a PET scan next week just to be sure.
This Dr is not a specialist in multiple myeloma he is just a local general cancer Dr that treats all kinds of cancer. My parents want me to go some where special like Mayo Clinic because of stories they have heard from friends about how they work wonders. I would like to stay as close to home as possible but want a specialist in multiple myeloma if it really is multiple myeloma. How do you know when it's time to see a specialist or if you are just getting paranoid because of mixed messages & unusual amount of pain? The more tests I have the more confused I think this is getting & as I am sure all of you know is very stressful to think about & deal with. I think they are going to give me anxiety issues or heart problems worrying before I ever get the cancer even back. Grrr
Amy Wow raising kids while going threw all of this I couldn't even imagine! Stay strong!!!
I have no kids & had my 1st plasmacytoma when I turned 45 I am 49yrs now & praying I am still in remission.
Joe & Amy, you have answered a lot of the questions that were going threw my head & I appreciate you sharing your knowledge. You will be in my thoughts & prayers.
I see there is a lot of controversy about having a stem cell transplant & was hoping by the time I ever needed on they would be obsolete??? What are your thoughts about the SCTP?
Re: Radiation? As well as other questions about plasmacytoma
Amy-
With all of the questions that you have and the confusion, why wouldn't you go to see an multiple myeloma specialist? It seems that you may be avoiding confronting the possiblity/probability that you have multiple myeloma and facing treatment to your own detriment. Many people see an multiple myeloma specialist at a distant location and then have their local oncologist coordinate your treatment with the multiple myeloma specialist.
I suggest that you ask your oncologist if s/he would be open to working with an multiple myeloma specialist. If not, find a new local oncologist. But, by all means, go for a consultation with an multiple myeloma specialist.
Best to you and what you decide to do,
Nancy in Phila
With all of the questions that you have and the confusion, why wouldn't you go to see an multiple myeloma specialist? It seems that you may be avoiding confronting the possiblity/probability that you have multiple myeloma and facing treatment to your own detriment. Many people see an multiple myeloma specialist at a distant location and then have their local oncologist coordinate your treatment with the multiple myeloma specialist.
I suggest that you ask your oncologist if s/he would be open to working with an multiple myeloma specialist. If not, find a new local oncologist. But, by all means, go for a consultation with an multiple myeloma specialist.
Best to you and what you decide to do,
Nancy in Phila
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NStewart - Name: Nancy Stewart
- Who do you know with myeloma?: self
- When were you/they diagnosed?: 3/08
- Age at diagnosis: 60
Re: Radiation? As well as other questions about plasmacytoma
Nancy, I have a feeling you meant to reply to me, Terri not Amy?
You said "It seems that you may be avoiding confronting the possiblity/probability that you have multiple myeloma and facing treatment" I never thought of it like this but I think in a way you may be right. No one has said I actually am not still in remission & I don't want to start any treatment if I don't have to. I guess I am scared to start any treatment, I hear such horror stories about it all & kind of feel like it must not be bad if no one can tell me I actually have multiple myeloma & am not still in remission,.
My local cancer Dr does refer with a multiple myeloma specialist that I saw when I 1st had my solitary plasmacytoma & said that this is the course of testing the specialist recommends.
I know this sounds crazy, but I feel like maybe I am worrying unnecessarily & that by going somewhere else I am telling my Dr here that I don't believe he knows what he is doing? If any of that makes sense...My Dr here keeps telling me if it looks like I have multiple myeloma or another plasmacytoma that he would recommend that I see the specialist I saw previously immediately.
A week from Monday I find out the results of my PET scan that I will have done Thursday & I guess depending on what that shows I will decide if I need to go see the specialist again.
One of my biggest fears is having to have a stem cell transplant & the side effects of the drugs you have to take. I know this is not a good way of thinking & you all have been threw it or are facing it strong & head on. I am usually a very strong willed person & not afraid of much of anything. But....this cancer stuff has me out of sorts & not myself. Not good but true for me...
You said "It seems that you may be avoiding confronting the possiblity/probability that you have multiple myeloma and facing treatment" I never thought of it like this but I think in a way you may be right. No one has said I actually am not still in remission & I don't want to start any treatment if I don't have to. I guess I am scared to start any treatment, I hear such horror stories about it all & kind of feel like it must not be bad if no one can tell me I actually have multiple myeloma & am not still in remission,.
My local cancer Dr does refer with a multiple myeloma specialist that I saw when I 1st had my solitary plasmacytoma & said that this is the course of testing the specialist recommends.
I know this sounds crazy, but I feel like maybe I am worrying unnecessarily & that by going somewhere else I am telling my Dr here that I don't believe he knows what he is doing? If any of that makes sense...My Dr here keeps telling me if it looks like I have multiple myeloma or another plasmacytoma that he would recommend that I see the specialist I saw previously immediately.
A week from Monday I find out the results of my PET scan that I will have done Thursday & I guess depending on what that shows I will decide if I need to go see the specialist again.
One of my biggest fears is having to have a stem cell transplant & the side effects of the drugs you have to take. I know this is not a good way of thinking & you all have been threw it or are facing it strong & head on. I am usually a very strong willed person & not afraid of much of anything. But....this cancer stuff has me out of sorts & not myself. Not good but true for me...
Re: Radiation? As well as other questions about plasmacytoma
Results from my PET scan showed a plasmacytoma on my rt hip near the one I had 4 yrs ago & no other lesions. Dr is contacting the radiologist to see if it is to close to where I had radiation in the past to be radiated again or not. The cancer Dr here is also making me an appointment with Gordan Srkalovic, MD at Sparrow cancer center Lansing, MI. He is a specialist in multiple myeloma that I saw when I 1st had my plasmacytoma 4 yrs ago. My Dr here wants to make sure that he agrees this is a plasmacytoma & about the proper form of treatment. My Dr here is baffled because he said Every Blood test I have had has shown No sign of anything abnormal & he isn't used to this. He said it's time to seek the opinion of a specialist in multiple myeloma.
Re: Radiation? As well as other questions about plasmacytoma
Hi Terri,
You are doing the right thing by seeing an multiple myeloma specialist! Even your average hem/onc is often not sufficiently up to date with the nuances of multiple myeloma dx and treatment. Speaking from a similar experience with multiple myeloma as you've had, (three "solitary plasmacytomas" treated on three seperate occasions with RT) I can tell you that multiple myeloma is so heterogenous that even the multiple myeloma experts have difficulty with dx and treatment....hence the fact that it is a uniformly fatal cancer.
It sounds like your cancer is entirely an issue with bone turnover, and more specifically, a focal bone disease as opposed to the more typical, diffuse bone disease we see with multiple myeloma. It is not uncommon then for many of the "markers" used to track our multiple myeloma, e.g, M-spike, are not much more than approximations of the progression of the disease....that's why monitoring your bone via imaging (NOT SKELETAL SURVEYS!) with MRI and PET/CT along with blood work, will be critical to you and your multiple myeloma specialist in fututure dx and treatment.
Best regards,
Steve
You are doing the right thing by seeing an multiple myeloma specialist! Even your average hem/onc is often not sufficiently up to date with the nuances of multiple myeloma dx and treatment. Speaking from a similar experience with multiple myeloma as you've had, (three "solitary plasmacytomas" treated on three seperate occasions with RT) I can tell you that multiple myeloma is so heterogenous that even the multiple myeloma experts have difficulty with dx and treatment....hence the fact that it is a uniformly fatal cancer.
It sounds like your cancer is entirely an issue with bone turnover, and more specifically, a focal bone disease as opposed to the more typical, diffuse bone disease we see with multiple myeloma. It is not uncommon then for many of the "markers" used to track our multiple myeloma, e.g, M-spike, are not much more than approximations of the progression of the disease....that's why monitoring your bone via imaging (NOT SKELETAL SURVEYS!) with MRI and PET/CT along with blood work, will be critical to you and your multiple myeloma specialist in fututure dx and treatment.
Best regards,
Steve
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Steve - Name: Steve
- Who do you know with myeloma?: myself
- When were you/they diagnosed?: December 2009
- Age at diagnosis: 55
10 posts
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