Plasmacytoma

Rory1987
Rory1987 Member Posts: 120
edited March 2014 in Multiple Myeloma #1
Hi im Rory from the philippines, I was diagnosed with a Solitary Plasmacytoma tumor in my right maxillary region 2 years ago and I underwent surgery and radiotherapy, lately I was diagnosed with a recurrence. The spot where it recurred was from one of my salivary gland and lymph node on my left submandibular region, I just want to know if anyone shares the same story as i had, this will definitely help me a lot to know that there are others just like me.

Comments

  • Orange007
    Orange007 Member Posts: 6
    #2
    We're all Brothers and Sisters in this.
    Rory,

    I had mm but am doing pretty well right now. Hang in there, better days are yet to come.

    --Dave--
  • Rory1987
    Rory1987 Member Posts: 120
    #3
    Orange007 said:

    We're all Brothers and Sisters in this.
    Rory,

    I had mm but am doing pretty well right now. Hang in there, better days are yet to come.

    --Dave--

    thanks
    Thanks dave. Im sure that better days are gonna come
  • rmaitral
    rmaitral Member Posts: 24
    #4
    plasmacytoma
    I will start my radiation tomorrow for a plasmacytoma in the bone of my right hip. In 2002 I had plasmacytoma in my spine which required rebuilding my back after the tumor was radiated. I’m not sure if ours are the same because you’re a soft tissue tumor and mine is bone. This time I have neuropathy in legs and feet, both hands and arms, back and sides of my chest.

    How is your treatment going? Is your tumor in the same area? Do you have pain? Do you have any other systems such as neuropathy? Do you have a protein spike in your blood?

    May the healing angels and spirits help heal your body.

    Roger
  • Rory1987
    Rory1987 Member Posts: 120
    #5
    rmaitral said:

    plasmacytoma
    I will start my radiation tomorrow for a plasmacytoma in the bone of my right hip. In 2002 I had plasmacytoma in my spine which required rebuilding my back after the tumor was radiated. I’m not sure if ours are the same because you’re a soft tissue tumor and mine is bone. This time I have neuropathy in legs and feet, both hands and arms, back and sides of my chest.

    How is your treatment going? Is your tumor in the same area? Do you have pain? Do you have any other systems such as neuropathy? Do you have a protein spike in your blood?

    May the healing angels and spirits help heal your body.

    Roger

    Thanks Roger2 years ago the
    Thanks Roger

    2 years ago the tumor that was removed from my maxillary region was soft and a couple of months ago I had small tumors on my left salivary gland. My treatment was suppose to start last month, all tests were done but regardless of the results My doctors said that we should start my therapy, a week before my chemotherapy, I had a cold so it was postponed, but the results of my blood chemistry came back that time, good thing my cold postoned the treatment and gave the doctors time to examine the results, My blood chemistry results were good. I had my blood tests done earlier but my white blood cell count was a bit low.

    Anyway, Im not experiencing pain, no neuropathy and No protein spike (yet)

    May the healing angels and spirits help heal you too sir.

    Rory
  • vsmith1982
    vsmith1982 Member Posts: 4
    #6
    Mutiple Plasmacytoma sites
    I have plasmacytomas also located on my maxillary. I was diagnosed in 2007 with singular extramedullary plasmacytoma located in my mouth, throat and airways. I had radiation treatment to my throat along with chemo to get the cancer in the other areas. My Dr.'s did not recommend radiation for the plasmacytoma in my mouth because of the damage the radiation could do to teeth, salivary glands etc. I am now nearly 4 yrs. past diagnosis but have not gotten rid of the plasmacytoma in my mouth. It is looking better then it has in a number of years but it is not gone. I am currently not doing any treatment.

    The radiation therapy to my throat got rid of the plasmacytoma but the sacr tissue has caused a lot of damage. I treat at UCLA the Dr. there indicated that most people with my problems can no longer talk but fortunately my voice is strong. I do have problems with swallowing and breathing though. I had to have a trache while I was going through radiation therapy for 4 mos. it looks like I might have to have a trache again not looking forward to that.

    How is your treatment going i see that your posting was over a year ago.
  • Rory1987
    Rory1987 Member Posts: 120
    #7
    vsmith1982 said:

    Mutiple Plasmacytoma sites
    I have plasmacytomas also located on my maxillary. I was diagnosed in 2007 with singular extramedullary plasmacytoma located in my mouth, throat and airways. I had radiation treatment to my throat along with chemo to get the cancer in the other areas. My Dr.'s did not recommend radiation for the plasmacytoma in my mouth because of the damage the radiation could do to teeth, salivary glands etc. I am now nearly 4 yrs. past diagnosis but have not gotten rid of the plasmacytoma in my mouth. It is looking better then it has in a number of years but it is not gone. I am currently not doing any treatment.

    The radiation therapy to my throat got rid of the plasmacytoma but the sacr tissue has caused a lot of damage. I treat at UCLA the Dr. there indicated that most people with my problems can no longer talk but fortunately my voice is strong. I do have problems with swallowing and breathing though. I had to have a trache while I was going through radiation therapy for 4 mos. it looks like I might have to have a trache again not looking forward to that.

    How is your treatment going i see that your posting was over a year ago.

    I guess we both have the
    I guess we both have the same experience, I had maxillectomy with inoculation back in 2007 and had 3-D conformal RT, good thing is that it got rid of the plasmacytoma. Finished chemo last november and Im pretty optimistic that im already in remission. I've read a lot of stuff in the internet about symptoms of MM but from what i've read I don't seem to find/experience any of the symptoms listed there.
  • vsmith1982
    vsmith1982 Member Posts: 4
    #8
    Rory1987 said:

    I guess we both have the
    I guess we both have the same experience, I had maxillectomy with inoculation back in 2007 and had 3-D conformal RT, good thing is that it got rid of the plasmacytoma. Finished chemo last november and Im pretty optimistic that im already in remission. I've read a lot of stuff in the internet about symptoms of MM but from what i've read I don't seem to find/experience any of the symptoms listed there.

    Plasmacytoma
    I forgot to check back once I had posted last year. In March 2011 I had to have a trach placed it was just to be temporary but I could breathe so much better and have a better quality of life so I have kept the trach. I am now a "neckbreather" but feel so much better I will deal with the trach.

    I am not in remission, still have tumor in my mouth but it isn't doing anything. So my Dr.'s and I decided that we won't do any treatment at this time. I also have no multiple myeloma symptoms which I am very happy about. I read somewhere early in my diagnosis that 20% of the people diagnosed with plasmacytoma do not get multiple myeloma. I always said someone has to be in that 20% it might as well be me. It looks like you are in that 20% with me Rory.

    Hope you have had a good year and are still in remission.

    Virginia

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