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Hi everybody

JDDK
JDDK CSN Member Posts: 1
in Multiple Myeloma #1

Hi everybody,

 

I join this forum because my blood test results have shown signs of multiple myeloma (free kappa light chains have been detected) and I actually feel the symptoms. I only still have to go to one specialist for confirmation and disease level determination. Please I will need your support and advice. Is there any advanced successfull treatment option? Thanks. JDDK from Germany

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  • XYMXYZPTLK2020
    XYMXYZPTLK2020 CSN Member Posts: 2 Member
    edited September 2019 #2
    TREATMENT AND OPTIONS

    Let me answer this way. When I was first diagnosed in March 2014, I was going into Stage 3 (Multiple Myeloma is a 3-stage cancer). My oncologist, based on available treaments at the time and the fact I was in the "High Risk" category of the cancer, estimated I had five to six years to live. My bone marrow was 80 to 90 percent consumed by cancerous plasma cells. I was started on the standard chemo treatments. I had a stem cell transplant (SCT) in 2015 that got me in remission for 2.5 years. This cancer rarely metastasizes but it does mutate. Follwong the SCT i had three other treatments, two of which failed due to cancer mutations. I am likely still alive today due to the ongoing development and research that added new treatments. Multiple Myeloma is different in each patient which makes a general cure difficult to achieve. Increasingly, the new treatment s are targeting the cancer cells and not affecting the normal fast-dividing cells destroyed by the older treatments. Cancer Centers are also pre-treating for nausea. I have not experienced nausea in any treatments to date. My advice - Find the best blood cancer oncologist you can. Don't hold back on asking questions.

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  • Pimmer
    Pimmer CSN Member Posts: 5 Member
    #3
    Treatment and options

    Thank you for sharing, would you do a stem cell transplant if you had the choice again?

    that is were I am at currently, have to decide.

     

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  • Misfit_101
    Misfit_101 CSN Member Posts: 3 Member
    edited May 2020 #4
    XYMXYZPTLK2020 said:

    TREATMENT AND OPTIONS

    Let me answer this way. When I was first diagnosed in March 2014, I was going into Stage 3 (Multiple Myeloma is a 3-stage cancer). My oncologist, based on available treaments at the time and the fact I was in the "High Risk" category of the cancer, estimated I had five to six years to live. My bone marrow was 80 to 90 percent consumed by cancerous plasma cells. I was started on the standard chemo treatments. I had a stem cell transplant (SCT) in 2015 that got me in remission for 2.5 years. This cancer rarely metastasizes but it does mutate. Follwong the SCT i had three other treatments, two of which failed due to cancer mutations. I am likely still alive today due to the ongoing development and research that added new treatments. Multiple Myeloma is different in each patient which makes a general cure difficult to achieve. Increasingly, the new treatment s are targeting the cancer cells and not affecting the normal fast-dividing cells destroyed by the older treatments. Cancer Centers are also pre-treating for nausea. I have not experienced nausea in any treatments to date. My advice - Find the best blood cancer oncologist you can. Don't hold back on asking questions.

    Progress?

    Was wondering what progress you have made.  Keep positive and let me know. 

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