The Myeloma Beacon

Independent, up-to-date news and information for the multiple myeloma community.
Home page Deutsche Artikel Artículos Españoles

Forums

Please introduce yourself to other readers. We would like to hear your story.

Trying to understand what I'm up against

by Ger on Thu Sep 06, 2012 11:01 am

Hi; I'm new. After a long search for the reason for low back, abdominal, hip and leg pain a Plasmacytoma was found in S1 of my sacrum. This was comfirmed by biopsy. The orthopedic surgeon that I had been refered to for the biopsy to get done said "don't worry it's not cancer".
The Oncologist that I was then referred to corrected that theory. When I saw the hematologist oncologist on July 16, he set me up with the radiation oncologist who arranged the planning session and 2 days later I started 25 radiation treatments. My bloodwork is all good apparently except for a slight M protien spike Igg of 4g/l. They did a MRI of the main skeleton and no other lesions showed up. The hematologist is suggesting it is a solitary bone plasmacytoma and radiation should take care of it.
On Aug 23 I had my last treatment. On Aug 24th I had blood work and saw the Hematologist again. All the blood work was good. But the protein part was not available yet. He said it the protein will have gone down but is not likely completely gone just yet as it may take a bit of time for it to comletely disappear, he would see me in 3 months. I phoned back to his nurse to find out what the protein level was. It is 4g/l the exact same, unchanged. I have not heard from the Dr. and the nurse gave me no indication of what this means. Does this mean the radiation didn't work? Does it mean there is something somewhere else in me? The biospsy, bloodwork, and MRI were the only tests done so I don't know if there is anything in my bone marrow other than the lesion site as no general bone marrow biopsy was done.
I'm 43 with 3 children 10 and under, I need to have an idea what my future holds and what all this means and I don't feel I have any answers. Can anyone help?

Ger
Name: Ger
Who do you know with myeloma?: Myself - Solitary Bone Plasmacytoma
When were you/they diagnosed?: July 16, 2012
Age at diagnosis: 43

Re: Trying to understand what I'm up against

by Mattias on Thu Sep 06, 2012 6:07 pm

I have experienced two solitary plasmacytomas since late december 2009. The first one caused pain in my left hip and finally I fractured My left femur. I went through surgery and radiation. MRI, CT showed no other lesions. Bloodwork fine and no M-spike. About a year later my back started to ache and first sign of M-spike started to show (4). Plain radiographs showed no lesions. After à cuople of months the pain was unbearable and the M-spike had reached 8g/l. Now CT and MRI showed a new plasmacytoma at L1. Went through another session of surgery and radiation. Bone marrow biopsy normal. Bloodwork normal and no M-spike. Every third month I go my hematologist for blood and urine test. So far so good. From what I have heard the M-spike can gradually decrease during a six month post treatment period so hand in there. I'm 42 with two sons 10 and 8 years old so I understand what you are going through. Today I'm able to play tennis, I don't need no pain medication. I wish you all the best and hope that your M-spike will disappear. Mattias from Sweden

Mattias
Name: Mattias
When were you/they diagnosed?: Solitary plasmacytoma 2009. Myeloma 2013
Age at diagnosis: 39

Re: Trying to understand what I'm up against

by Dr. Peter Voorhees on Sun Sep 09, 2012 10:07 pm

Dear Ger,

A bone marrow aspirate/biopsy would be useful to see if there is more widespread involvement. If it is done, be sure it is not done in the radiation field. The result would be negative, whether there was disease there previously or not. Is your M spike 4 g/L (which is not that high) or 4g/dL?

And yes, the M spike can continue to drop for months after radiation therapy.

Let us know about the answer to the question above. Thanks!

Pete V.
Dr. Peter Voorhees
University of North Carolina at Chapel Hill

Any advice provided in these postings is based on a very limited amount of information. There is no substitute for the care of your oncologist/hematologist. Therefore, all suggestions should be discussed with your treating physician. None of the comments presented here are meant to replace the evaluation of a patient by a knowledgeable physician.


Dr. Peter Voorhees
Name: Peter Voorhees, M.D.
Beacon Medical Advisor

Re: Trying to understand what I'm up against

by Ger on Mon Sep 10, 2012 3:17 pm

Thank you Dr. The spike is only 4g/l which I do understand is low. But I would still have expected some drop, is this wrong? My question has also become why am I in more pain than I was before radiation? My lower back, hips (which includes the left hip now), abdomin etc is making it hard to walk, bending is extremely painful. My 10 year old son has been asking me why when they were supposed to make you better am I in more pain? Unfortunately I don't have an answer for him and it is scaring him. I have contacted the Nurse for the Oncologist who told me he has put an order in the computer for me to see him again before the 3 months and that I should be getting a call.

Ger
Name: Ger
Who do you know with myeloma?: Myself - Solitary Bone Plasmacytoma
When were you/they diagnosed?: July 16, 2012
Age at diagnosis: 43


Return to Member Introductions / Personal Stories