I am new to all of this. I had a plasmacytoma that destroyed my T11 in February of 2016. After a 10 and 1/2 hour surgery in which the surgeon fused T8 to S2 , we hoped that it would not progress to multiple myeloma. Unfortunately the latest CT scan shows a few lytic lesions, and I am on the doorstep of treatment and learning as much as I can to prepare.
Let the games begin.
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mtsmith - Name: mtsmith
- Who do you know with myeloma?: Me
- When were you/they diagnosed?: Feb '16
- Age at diagnosis: 56
Re: Plasmacytoma, surgery, radiation & now multiple myeloma
Hi Mtsmith,
Welcome to the forum, but sorry to hear that your solitary plasmacytoma transformed into a diagnosis of multiple myeloma. Unfortunately, that happens with about 50% of solitary plasmacytoma patients. Hopefully, you have caught the disease before it can cause any additional damage.
You may want to read through this article, which offers some interesting insights from various specialists:
"Solitary Bone Plasmacytoma – What Every Patient Should Know", The Myeloma Beacon, May 4, 2012
Welcome to the forum, but sorry to hear that your solitary plasmacytoma transformed into a diagnosis of multiple myeloma. Unfortunately, that happens with about 50% of solitary plasmacytoma patients. Hopefully, you have caught the disease before it can cause any additional damage.
You may want to read through this article, which offers some interesting insights from various specialists:
"Solitary Bone Plasmacytoma – What Every Patient Should Know", The Myeloma Beacon, May 4, 2012
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Multibilly - Name: Multibilly
- Who do you know with myeloma?: Me
- When were you/they diagnosed?: Smoldering, Nov, 2012
Re: Plasmacytoma, surgery, radiation & now multiple myeloma
Thanks Multibilly,
I knew the chances were 50-50 that it would progress to multiple myeloma. I guess the good news is the odds got better for someone else.
I am thankful I found this site so that my wife and I can get up to speed and have a little background info going into my next appointment with the hematologist-oncologist.
Any and all input is welcome and much appreciated!
I knew the chances were 50-50 that it would progress to multiple myeloma. I guess the good news is the odds got better for someone else.
I am thankful I found this site so that my wife and I can get up to speed and have a little background info going into my next appointment with the hematologist-oncologist.
Any and all input is welcome and much appreciated!
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mtsmith - Name: mtsmith
- Who do you know with myeloma?: Me
- When were you/they diagnosed?: Feb '16
- Age at diagnosis: 56
Re: Plasmacytoma, surgery, radiation & now multiple myeloma
Journey update:
I had the CT scan at the end of December, showing several apparent lesions on my spine.
My specialist then ordered a PET scan, which showed that the suspected lesions from the CT scan were inactive but I had two minute spots light up on a couple ribs - if it looks like a duck and quacks like a duck, ...
I have begun four cycles of Revlimid, Velcade and dexamethasone, RVD (two weeks on, one off). After one full cycle the monoclonal has disappeared:
MONOCLONAL PROTEIN, SERUM
9/6/16 - 37.0 mg/dL H
1/24/17 - 94.8 mg/dL H
2/21/17 -31.5 mg/dL H
2/28/17 - NONE DETECTED
The numbers were small to begin with, but does this mean that they may postpone the stem cell transplant (plan to do after completion of the four cycles)?
I had the CT scan at the end of December, showing several apparent lesions on my spine.
My specialist then ordered a PET scan, which showed that the suspected lesions from the CT scan were inactive but I had two minute spots light up on a couple ribs - if it looks like a duck and quacks like a duck, ...
I have begun four cycles of Revlimid, Velcade and dexamethasone, RVD (two weeks on, one off). After one full cycle the monoclonal has disappeared:
MONOCLONAL PROTEIN, SERUM
9/6/16 - 37.0 mg/dL H
1/24/17 - 94.8 mg/dL H
2/21/17 -31.5 mg/dL H
2/28/17 - NONE DETECTED
The numbers were small to begin with, but does this mean that they may postpone the stem cell transplant (plan to do after completion of the four cycles)?
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mtsmith - Name: mtsmith
- Who do you know with myeloma?: Me
- When were you/they diagnosed?: Feb '16
- Age at diagnosis: 56
Re: Plasmacytoma, surgery, radiation & now multiple myeloma
The same thing happened to my dad. Solitary plasmacytoma turned into multiple myeloma. After surgery, radiation, and nine months of treatment (he refused to have a stem cell transplant), my dad has now achieved a complete response (in remission).
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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, surgery, radiation & now multiple myeloma
I'm hoping for the best treatment and results for you.
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rebecca_binno - Name: Rebecca Savage
- Who do you know with myeloma?: myself
- When were you/they diagnosed?: 2016
- Age at diagnosis: 53
Re: Plasmacytoma, surgery, radiation & now multiple myeloma
Just a quick update -
I had my stem cell transplant in early June (Day 0 is June 7). I spent 3 weeks in the hospital and am beginning my second week at home. The only real issue in the hospital was an unexplained fever that came every evening in the last week and required cultures to be taken (all negative). They attributed the fevers to the Neupogen but were never really sure. I was able to have my port removed before I came home.
I plan to participate in a clinical trial regarding the use of Ninlaro (ixazomib) post transplant. Other than that, just waiting for my taste buds to return to normalcy, as well as my energy.
I had my stem cell transplant in early June (Day 0 is June 7). I spent 3 weeks in the hospital and am beginning my second week at home. The only real issue in the hospital was an unexplained fever that came every evening in the last week and required cultures to be taken (all negative). They attributed the fevers to the Neupogen but were never really sure. I was able to have my port removed before I came home.
I plan to participate in a clinical trial regarding the use of Ninlaro (ixazomib) post transplant. Other than that, just waiting for my taste buds to return to normalcy, as well as my energy.
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mtsmith - Name: mtsmith
- Who do you know with myeloma?: Me
- When were you/they diagnosed?: Feb '16
- Age at diagnosis: 56
Re: Plasmacytoma, surgery, radiation & now multiple myeloma
For what it is worth, I am approximately 10 months post-transplant and am in complete response and minimal residual disease (MRD) negative. My latest numbers are as follows:
Serum Kappa Free Lt Chains 14.3 mg/l 3.9-26.0 mg/l
Serum Lambda Free L Chains 12.9 mg/l 6.4-22.1 mg/l
Serum Kappa/Lambda Ratio 1.11 0.51-1.72
IgG 738 mg/dL 600-1,714 mg/dL
IgA 78 mg/dL 66-433 mg/dL
IgM 45 mg/dL 45-281 mg/dL
Total Protein-TP 7.0 g/dL 6.4-8.3 g/dL
Albumin 4.3 g/dL 3.5-5.0 g/dL
Alpha 1 0.3 g/dL 0.2-0.4 g/dL
Alpha 2 1.0 g/dL 0.5-1.0 g/dL
Beta 0.7 g/dL 0.5-1.1 g/dL
Gamma 0.7 g/dL 0.6-1.5 g/dL
SPE Interpretation:
Normal Serum Protein Electrophoresis Pattern.
Monoclonal Protein, Serum:
None Detected mg/dL (0 mg/dL)
WBC (White Blood Count) 4.59 K/Ul 4.23-9.07 K/Ul
RBC 4.20 M/Ul 4.63-6.08 M/Ul L
Hemoglobin (Hgb) 12.0 g/dL 13.7-17.5 g/dL L
Hematocrit (Hct) 36.3 % 40.1-51.0 % L
I am presently in a clinical trial, Ninlaro-only maintenance. The side effects are very minimal.
I follow the forum posts on an almost daily basis, just wanted to pass along some good news.
Serum Kappa Free Lt Chains 14.3 mg/l 3.9-26.0 mg/l
Serum Lambda Free L Chains 12.9 mg/l 6.4-22.1 mg/l
Serum Kappa/Lambda Ratio 1.11 0.51-1.72
IgG 738 mg/dL 600-1,714 mg/dL
IgA 78 mg/dL 66-433 mg/dL
IgM 45 mg/dL 45-281 mg/dL
Total Protein-TP 7.0 g/dL 6.4-8.3 g/dL
Albumin 4.3 g/dL 3.5-5.0 g/dL
Alpha 1 0.3 g/dL 0.2-0.4 g/dL
Alpha 2 1.0 g/dL 0.5-1.0 g/dL
Beta 0.7 g/dL 0.5-1.1 g/dL
Gamma 0.7 g/dL 0.6-1.5 g/dL
SPE Interpretation:
Normal Serum Protein Electrophoresis Pattern.
Monoclonal Protein, Serum:
None Detected mg/dL (0 mg/dL)
WBC (White Blood Count) 4.59 K/Ul 4.23-9.07 K/Ul
RBC 4.20 M/Ul 4.63-6.08 M/Ul L
Hemoglobin (Hgb) 12.0 g/dL 13.7-17.5 g/dL L
Hematocrit (Hct) 36.3 % 40.1-51.0 % L
I am presently in a clinical trial, Ninlaro-only maintenance. The side effects are very minimal.
I follow the forum posts on an almost daily basis, just wanted to pass along some good news.
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mtsmith - Name: mtsmith
- Who do you know with myeloma?: Me
- When were you/they diagnosed?: Feb '16
- Age at diagnosis: 56
Re: Plasmacytoma, surgery, radiation & now multiple myeloma
Congrats on the complete response, mtsmith.
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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
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