First I would like to thank the all of the members who take time to share there stories and advise. My journey with multiple myeloma began last summer after a week at the beach. My husband's employer offers a yearly physical so I encouraged him to get checked out. His physical included a chest X-ray, which is not usually done on a routine physical but the family Dr, ordered it. So my husband went to the out patient clinic at noon and by 2pm the Dr. was calling we found something on the chest X-ray we need to check out. I called and got you an appointment for a CT scan at 4pm you need to be there. (husband never smoked and is very good health) So long story short a large mass was found our world was turned upside down and the Dr. visits started. Met with a thoracic surgeon and he ordered a biopsy which came back positive for a plasmacytoma originating in the left 6th rib. So readers you know where this is going the good old bone marrow biopsy.
4.7 x7 x 15.4 mass SUV 4.7 PET/CT
Bone marrow biopsy 5% Kappa,
Initial Lab work
LDH 167
M-spike 1.78 Immunofixation IgG Kappa
UPE - no monoclonal bands noted
IGG 2962
Beta-2 microglobulin 1.8
So treatment plan is RT therapy my husband received a dose of 5040 cGY, from Oct. to Dec. had a post CT scan with no change in size. Now I'm getting worried we were lead to believe that RT was the treatment and this was going to be a done deal. So now I'm in full research mode and found the Beacon what a wealth of knowledge. Made an appointment for a 2nd opinion at John Hopkins just to make sure the local guy is on the ball. With our local oncologist I was starting to feel like he was a little to wait and see. So after the Ct scan we were told maybe this is just inflammation we need to wait for 12 weeks post RT for Pet/CT (March 5) which still showed minimal improvement. So now I'm really glad I have the appoint set for the following week at John Hopkins. We go to Baltimore and they really have a 1st class outfit and met with Dr. Borrello and his NP Amy and he says to my husband you have MGUS which we were told by our local oncologist but who said lets just wait and I'll sees you in June. with no lab work ordered. Well Dr. Borrello said by reading your numbers you only had a 20% reduction you need a repeat bone marrow biopsy and a surgical consult to see if the tumor can be removed if not I recommend starting treatment.
Local oncologist never ordered Free light chain assay but at Hopkins they did and the results were
Kappa free light chain 326
Lamba free light chain 0.3
Beta-2 microglobulin 2
Based on this I'm confused is my husband MGUG with plasmacytoma, SMM or active? What is our next step any insight would be appreciated from others who have been down this road.
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6 posts
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Mrs.Wood - Name: Alicia
- Who do you know with myeloma?: husband
- When were you/they diagnosed?: September 2011
- Age at diagnosis: 59
Re: Whats next?
Another opinion, another opinion, and another. I had 4 opinion...finally went to Dana Farber in boston. They all agreed, and then I opted for a clinical trial. Seems to be working. Going into my 4th year. : 
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carolynah
Re: Whats next?
To Mrs Wood,
It's so very confusing, I know! I'm writing because I had a similar diagnosis --fairly low level myeloma but a very large plasmacytoma. I ended up having chemo to shrink the plasmacytoma so that they could do radiation safely. I was told that they would not do surgery for this as it would not be possible to insure that they could get it all. After radiation I had both an auto and an allo. I've been in "remission" for three years and am not on medication now.
I'll be interested in what develops for your husband and hoping that things work out well for him.
My understanding is that a single plasmacytoma at diagnosis that can be radiated is considered "curable" but that a large mass puts you at higher risk and may indicate a need for more aggressive treatment. Your husband's numbers are lower than mine were though so he may have more options, especially if he is at a "mugus" level except for the plasmacytoma.
One thing that I learned is that Velcade is effective in shrinking plasmacytomas. Thalidomide is not.
Good luck to both of you in finding a treatment path that you feel good about and that works well! I'll be interested in hearing what you do.
Best,
KCH
It's so very confusing, I know! I'm writing because I had a similar diagnosis --fairly low level myeloma but a very large plasmacytoma. I ended up having chemo to shrink the plasmacytoma so that they could do radiation safely. I was told that they would not do surgery for this as it would not be possible to insure that they could get it all. After radiation I had both an auto and an allo. I've been in "remission" for three years and am not on medication now.
I'll be interested in what develops for your husband and hoping that things work out well for him.
My understanding is that a single plasmacytoma at diagnosis that can be radiated is considered "curable" but that a large mass puts you at higher risk and may indicate a need for more aggressive treatment. Your husband's numbers are lower than mine were though so he may have more options, especially if he is at a "mugus" level except for the plasmacytoma.
One thing that I learned is that Velcade is effective in shrinking plasmacytomas. Thalidomide is not.
Good luck to both of you in finding a treatment path that you feel good about and that works well! I'll be interested in hearing what you do.
Best,
KCH
Re: Whats next?
Hmmm, these posts are interesting.
How can a clinician diagnose MGUS when patient has plasmacytoma?
I hope one of the Beacon Advisors can share with us how that diagnosis could occur.
"The malignant cells of multiple myeloma, plasma cells, and plasmacytoid lymphocytes are the most mature cells of B-lymphocytes. B-cell maturation is associated with a programmed rearrangement of DNA sequences in the process of encoding the structure of mature immunoglobulins. It is characterized by overproduction of monoclonal immunoglobulin G (IgG), immunoglobulin A (IgA), and/or light chains, which may be identified with serum protein electrophoresis (SPEP) or urine protein electrophoresis (UPEP).
The pathophysiologic basis for the clinical sequelae of multiple myeloma involves the skeletal, hematologic, renal, and nervous systems, as well as general processes. Plasma-cell proliferation causes extensive skeletal destruction with osteolytic lesions, anemia, and hypercalcemia. Mechanisms for hypercalcemia include bony involvement and, possibly, humoral mechanisms. Isolated plasmacytomas (which affect 2-10% of patients) lead to hypercalcemia through production of the osteoclast-activating factor."
How can a clinician diagnose MGUS when patient has plasmacytoma?
I hope one of the Beacon Advisors can share with us how that diagnosis could occur.
"The malignant cells of multiple myeloma, plasma cells, and plasmacytoid lymphocytes are the most mature cells of B-lymphocytes. B-cell maturation is associated with a programmed rearrangement of DNA sequences in the process of encoding the structure of mature immunoglobulins. It is characterized by overproduction of monoclonal immunoglobulin G (IgG), immunoglobulin A (IgA), and/or light chains, which may be identified with serum protein electrophoresis (SPEP) or urine protein electrophoresis (UPEP).
The pathophysiologic basis for the clinical sequelae of multiple myeloma involves the skeletal, hematologic, renal, and nervous systems, as well as general processes. Plasma-cell proliferation causes extensive skeletal destruction with osteolytic lesions, anemia, and hypercalcemia. Mechanisms for hypercalcemia include bony involvement and, possibly, humoral mechanisms. Isolated plasmacytomas (which affect 2-10% of patients) lead to hypercalcemia through production of the osteoclast-activating factor."
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suzierose - Name: suzierose
- When were you/they diagnosed?: 2 sept 2011
Re: Whats next?
Suzierose, I would love to have one of the Beacon advisors speak to this MGUS, plasmacytoma condition. I have questioned how can you have both?
KCH thanks for the tip on Velcade and glad you are doing well. You are so right its very confusing we thought 5 weeks RT therapy and we would be done.
Carolynah one thing I've learned so far is that you need to keep on top of your game and if that means changing MD's getting 2nd opinions thats what you have to. I'm looking into NIH and waiting a call back.
Thanks for all of your help.
KCH thanks for the tip on Velcade and glad you are doing well. You are so right its very confusing we thought 5 weeks RT therapy and we would be done.
Carolynah one thing I've learned so far is that you need to keep on top of your game and if that means changing MD's getting 2nd opinions thats what you have to. I'm looking into NIH and waiting a call back.
Thanks for all of your help.
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Mrs.Wood - Name: Alicia
- Who do you know with myeloma?: husband
- When were you/they diagnosed?: September 2011
- Age at diagnosis: 59
Re: Whats next?
Your husband's IGG Kappa with a free ight chain reading of 326 is pretty high considering that normal is 19. Furthermore he has a high M spike of 1.78 and the tumor. I was diagnosed with stage 2 and had no M spike with an IGG kappa light chain reading of 95 with small lesions on my hips and right femur. I definitely think he has full blown multiple myeloma and not MGUS. The only issue is the staging but that really is irrelevant. He should be in treatment. You definitely need to go to John Hopkins.
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Ron Harvot
6 posts
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