Re-occurring plasmacytoma in a different location

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  • MrBobC
    MrBobC Member Posts: 17
    #22
    rmaitral said:

    Possible POEMS Syndrome
    Yesterday I had an office visit with the MD for a Second opinion. It is confirmed that I have multiple myeloma, possible “POEMS Syndrome”. Very Rare!

    Lots of blood tested yesterday, Bone marrow test on Friday and a pet scan Monday. The Scan well takes about two hours. Another morning of very deep meditation, it’s the only way I have done long hours of test over the past 8 years.

    I have mixed feelings about what is good and bad information. I have known that I had multiple myeloma since the beginning. My wife really wanted to believe it was a single plasmacytoma in 2002 and I was in remission till last year. Now two more spots on my hip with the last MRI. Is naming it “POEMS Syndrome” helpful? They can call it anything they want as long as that name will give them information.

    Once all the info is in then we can look at ways to treat the problem. Pain management is the first step or now to reduce the pain level. Quality of live is also the top of my list. We can’t really review options until we have all the current info.

    Thanks for your prays
    Roger

    POEMS Syndrome
    Hi Rodger. I see your posting has duplicates like I do sometime. Thanks...I don't feel so bad now!

    I have not heard of POEMS Syndrome, especially under the Multiple Myeloma umbrella. The progress with MM treatment has really skyrocketed over the last few years. Valcade (Bortezomib) and Dexamethasone has been a wonder combination as reviewed by many of the Cancer sites (LLS, Cancer Society, etc.) for MM. The survival rate has dramatically increased and they don't have enough data to show how long because the history only goes back 5 or 6 years. My last tests showed no signs of cancer; I go back the week of Thanksgiving for more follow up tests. That's the reason it is important to do your research before you commit to a treatment plan or facility. There are no guarantee's anywhere but I like the prognosis I was given earlier this year. Let your wife help with the research so you both feel comfortable with the decision.

    I used to seldom go to the doctor, much less the hospital. I went to the hospital as a young adult to get my tonsils remove. Other than that I've never been admitted to the hospital. And them came MM almost 2 years ago! I hear you about the MRI's. I tend to take naps during my 1 to 2 hour stay! I hope I don't snore...so far they haven't said anything.

    My wife and my lives became centered around cancer treatments, traveling to the hospital, and dealing with insurance and related bills. Not what we wanted to do, but was the cards we were dealt. Our faith and trust in God is the only thing that gave us comfort and the strength that we needed. Don't get me wrong, the road has been very hard and demanding on us physically, mentally, and financially.

    Let me hear what you find out about POEMS Syndrome. That is a new one to me and I don't know anything about it.

    Take care and let you wife know you have someone praying for both of you.

    Bob
  • MichaelO
    MichaelO Member Posts: 1
    #23
    rmaitral said:

    Possible POEMS Syndrome
    Yesterday I had an office visit with the MD for a Second opinion. It is confirmed that I have multiple myeloma, possible “POEMS Syndrome”. Very Rare!

    Lots of blood tested yesterday, Bone marrow test on Friday and a pet scan Monday. The Scan well takes about two hours. Another morning of very deep meditation, it’s the only way I have done long hours of test over the past 8 years.

    I have mixed feelings about what is good and bad information. I have known that I had multiple myeloma since the beginning. My wife really wanted to believe it was a single plasmacytoma in 2002 and I was in remission till last year. Now two more spots on my hip with the last MRI. Is naming it “POEMS Syndrome” helpful? They can call it anything they want as long as that name will give them information.

    Once all the info is in then we can look at ways to treat the problem. Pain management is the first step or now to reduce the pain level. Quality of live is also the top of my list. We can’t really review options until we have all the current info.

    Thanks for your prays
    Roger

    Hi Roger,
    I just completed
    Hi Roger,

    I just completed radiation for single plasmacytoma POEMS Syndrome. Did you ever get a diagnosis? How are you doing?

    Best regards,
    Mike
  • survivor_mike
    survivor_mike Member Posts: 1
    #24
    rmaitral said:

    Possible POEMS Syndrome
    Yesterday I had an office visit with the MD for a Second opinion. It is confirmed that I have multiple myeloma, possible “POEMS Syndrome”. Very Rare!

    Lots of blood tested yesterday, Bone marrow test on Friday and a pet scan Monday. The Scan well takes about two hours. Another morning of very deep meditation, it’s the only way I have done long hours of test over the past 8 years.

    I have mixed feelings about what is good and bad information. I have known that I had multiple myeloma since the beginning. My wife really wanted to believe it was a single plasmacytoma in 2002 and I was in remission till last year. Now two more spots on my hip with the last MRI. Is naming it “POEMS Syndrome” helpful? They can call it anything they want as long as that name will give them information.

    Once all the info is in then we can look at ways to treat the problem. Pain management is the first step or now to reduce the pain level. Quality of live is also the top of my list. We can’t really review options until we have all the current info.

    Thanks for your prays
    Roger

    I had my first plasmaceytoma in my spine in 2008 had surgery and 20 trips on radition.% yrs to the day I had a reoccurance in my nasal passage on the left side.this is also real rare and I have looked to find someone that has had a reoccuring p.ce. and not have multiple my.

  • Jan1122
    Jan1122 Member Posts: 2
    #25
    I have had 2 separate times of plasmacytoma

    Hi rmaitral

    I hope this finds you doing well. I've read thru several of your responses & it appears that you did do treatments. Did you do chemo & radiation or radiation only.  I'm interested to hear more about your history. It seems very similar to mine. your 1st tumor was around the same time frame as mine. My 1st  tumor was located in my upper femor bone , extremely close to the L hip. Eventually did fracture & had hip replacement 3.5 years ago. but anyway, I had my first round of radiation to this tumor which by the way was approx 8 cm long. I had excrutiating pain when I would go walking, which I did everyday. That is 'why' I knew I had something wrong, but I would have NEVER guessed cancer. Because my symtoms all started out very differently, I too have neuropathy, that was one of my 1st symptoms, lost all nerve sensations in both lower legs & both feet. even though the tumor was only located on the left side of my body. I did relatively well, went thru 2 yrs of chemo for CLL , Leukemia  & I am now doing very well w/ that. Then I had my 2nd tumor in May of 2012, it was located in my T3 in my upper spine. once again did 4 or 5 weeks of radiation. My 1st tumor they did 6 weeks of aggressive treatments.  They have given me more bone marrow test than I can remember, but fortunately for me, they have not yet been able to diagnose MM.  I hear it is different for you. Is that the case ? 

    Can you update me on your status & a little bit of what you have been thru, we seem so similar & I've not met or spoken with anyone that had such a similarity as me. You stated in your 1st comment, that the Dr said it was very rare to have a 2nd singular plasmacytoma in a completely different location, exactly what my Dr has stated to me.  She has told me that I am at an extremely high risk for MM.  I just keep praying that it never materializes.  I am 56 & I was 45 went this all started.

    I would really enjoy hearing from you. After reading your history , we have had the same tumors just mine was in my back the 2nd time & yours was in your back the 1st time & the same for the tumors in our hips. that's pretty wild

     

    Take Care

    janiceB

  • rsandrew
    rsandrew Member Posts: 4 Member
    #26

    I have had prostate cancer, plasmacytoma in my C6 and then in my number 6 rib and most likely on my L4 so at this point all I can do is continue to fight the fight.

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