re-occurring plasmacytoma in a different location

rmaitral
rmaitral Member Posts: 24
edited March 2014 in Rare and Other Cancers #1
Is there anyone that has had re-occurring plasmacytoma in a different location? This is my second bout. First was in my back (2002) and now I start treatment in my hip. My doctor says it is very unique specimen to have another singular tumor in a different location. The hope is way eliminating the tumor will also eliminate the neuropathy that has developed over the last several months in my legs, arms and back.

I was told Thursday that there were only 13 reported cases, Now 14. I have many questions but I know that they cannot be answered by the medical field but maybe someone out there knows or has had re-occurring plasmacytoma.

Comments

  • vsmith1982
    vsmith1982 Member Posts: 4
    #2
    Multiple Solitary Plasmacytoma
    I was diagnosed with singular extramedullary plasmacytoma in 2007. I had tumors in my mouth, throat and airways. My Dr.'s also indicated to me that this is very rare to have multiple sites of plasmacytoma. I have not had any reoccurance just multiple sites to start with.

    The tumor in my throat impacted my breathing so much I needed to have a trache placed before they could start radiation treatment. Over the past 3 years I have had the radiation therapy ( 25 treatments), Rituxan, Velcade and Revlimid. I developed neurapthy in my feets and hands after I started the Velcade treatment. I am now 2 1/2 yrs past treatment with the Velcade and 9 mos. since I was on Revlimid. The neuropathy is finally getting better. Yahoo!

    I would be glad to answer any questions that I can I have not found anyone to discuss plasmacytoma with either.

    Virginia
  • lorenkershner
    lorenkershner Member Posts: 1
    #3
    second time for me also.
    Hello, I was 33yrs old when i was first told i had plasmacytoma .It destroyed my T2 verterbra. My Dr.told me i was rather young for this type of cancer.That was in 2000 .Now in June of 2011 i have been dianogsed again but in my lower back.You are not alone,very little info on this type is available,discouraging.hope the very best for you. Loren
  • Carimcgowan
    Carimcgowan Member Posts: 1
    #4
    lorenkershner said:

    second time for me also.
    Hello, I was 33yrs old when i was first told i had plasmacytoma .It destroyed my T2 verterbra. My Dr.told me i was rather young for this type of cancer.That was in 2000 .Now in June of 2011 i have been dianogsed again but in my lower back.You are not alone,very little info on this type is available,discouraging.hope the very best for you. Loren

    My husband has a plasmacytoma

    My husband has a plasmacytoma on his lower spine.  Undergoing radiation.  I was wondering how you are doing and if you could share some of your experience with me.  Just wondering what to expect.  

  • johninmack
    johninmack Member Posts: 1
    edited June 2018 #5
    vsmith1982 said:

    Multiple Solitary Plasmacytoma
    I was diagnosed with singular extramedullary plasmacytoma in 2007. I had tumors in my mouth, throat and airways. My Dr.'s also indicated to me that this is very rare to have multiple sites of plasmacytoma. I have not had any reoccurance just multiple sites to start with.

    The tumor in my throat impacted my breathing so much I needed to have a trache placed before they could start radiation treatment. Over the past 3 years I have had the radiation therapy ( 25 treatments), Rituxan, Velcade and Revlimid. I developed neurapthy in my feets and hands after I started the Velcade treatment. I am now 2 1/2 yrs past treatment with the Velcade and 9 mos. since I was on Revlimid. The neuropathy is finally getting better. Yahoo!

    I would be glad to answer any questions that I can I have not found anyone to discuss plasmacytoma with either.

    Virginia

    plasmacytoma in back of mouth

    Hi Virginia,  I have had a separate plasmcytoma in the back of my mouth which I was told was very rare.  In noting that your case was several years ago, was wondering if you are still active on this site but for the record I finished radiation jan of this year (2018) and have been looking for someone to compare notes with.  Salaivary glands that don't seem to be working at all are the issue now and there will scans coming later this year to see progress.  Brand new to this site and not sure about the mechanics of posting.   Thank You      John

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