anyone know anything about Zelcade?

kumzooloo
kumzooloo Member Posts: 2
edited March 2014 in Multiple Myeloma #1
Hello everyone,
My father has pretty advanced plasmacytoma/multiple myeloma (I'm a little ignorant about the details) and he is curious about trying to get into zelcade clinical
trials as a last resort- in the SF Bay Area preferably. I can't find anything via googling and would be very appreciative if any of you would have any ideas/leads for me to look into. Thank You! -

Comments

  • AuthorUnknown
    AuthorUnknown Member Posts: 1,537 Member
    #2
    I think you mean"Velcade." My sister was first diagnosed a year ago with Mutliple Myeloma & it quickly progressed to Plasma Cell Leukemia. She had a bone marrow transplant, Thalidamide, Dextr, etc.,. Didn't work. Dr's most recently tried Velcade. Unfortunately, just recieved the news today - it didn't work either. If you Google Velcade you will find lots of info. It's a miracle drug for some. Your local haematologist should be able to find a clinical trial for your Dad. Blessings. Hope it helps. Anyone have suggestions of anything that works after Velcade fails? ...other then prayers!
  • kumzooloo
    kumzooloo Member Posts: 2
    #3
    AuthorUnknown said:

    I think you mean"Velcade." My sister was first diagnosed a year ago with Mutliple Myeloma & it quickly progressed to Plasma Cell Leukemia. She had a bone marrow transplant, Thalidamide, Dextr, etc.,. Didn't work. Dr's most recently tried Velcade. Unfortunately, just recieved the news today - it didn't work either. If you Google Velcade you will find lots of info. It's a miracle drug for some. Your local haematologist should be able to find a clinical trial for your Dad. Blessings. Hope it helps. Anyone have suggestions of anything that works after Velcade fails? ...other then prayers!

    Ahhhh, "Velcade". Thank You! Someone gave me the wrong name. I will research under the right name this time! Good Luck with your sister.
  • GregK
    GregK Member Posts: 3 Member
    #4
    kumzooloo said:

    Ahhhh, "Velcade". Thank You! Someone gave me the wrong name. I will research under the right name this time! Good Luck with your sister.

    You mean Velcade. I just took three cycles of Velcade combined with Dexamethasone, October 4th to Dec 23rd, 2004. I had between 40-45% involvement of MM cancer cells in my bone marrow biopsy. Three rounds of Velcade brought it down to 10-15%. So it worked very well.

    I got side effect of severe rash on trunk of my body, which took four months to go away and neuropathy. The neruopathy is still being treated with Nuerontin. It has been very painful and is focused mainly on pain and burning in my feet. This past week I feel much better and it might be going away...although very slowly.

    We followed Velcade treatment with autologous Stem Cell Transplant which brought me down to 10-15%. Before the transplant I had high dose chemo (cytoxin for harvest and melphalan before transplant). This was done in January 2005 to mid Feb 2005. Stem Cell transplant zero day was Feb 17, 2005 and I am now at Day 97 past the stem cell transplant.

    This brought me down to 5-10% involvement of MM cancer cells in bone marrow biopsy and was described as a "partial response"...which is supposedly greater than 50% of bad cells went away, but not more than 90%.

    I am working with dr on next step.

    Right now the next steps looks like Thalidamide then another Stem Cell Transplant (they got enough cells for me to do at least one more transplant).

    Please feel free to e-mail me for more particulars on the Velcade/Dex treatment. I would be glad to share any of my experiences that may help you.

    I am searching for information from people that have taken Thalidamide. Particularly, I am trying to judge the risk of getting permanent neuropathy that can, as my dr discribes it, "be a disaster".
  • lbunting54
    lbunting54 Member Posts: 1
    #5
    GregK said:

    You mean Velcade. I just took three cycles of Velcade combined with Dexamethasone, October 4th to Dec 23rd, 2004. I had between 40-45% involvement of MM cancer cells in my bone marrow biopsy. Three rounds of Velcade brought it down to 10-15%. So it worked very well.

    I got side effect of severe rash on trunk of my body, which took four months to go away and neuropathy. The neruopathy is still being treated with Nuerontin. It has been very painful and is focused mainly on pain and burning in my feet. This past week I feel much better and it might be going away...although very slowly.

    We followed Velcade treatment with autologous Stem Cell Transplant which brought me down to 10-15%. Before the transplant I had high dose chemo (cytoxin for harvest and melphalan before transplant). This was done in January 2005 to mid Feb 2005. Stem Cell transplant zero day was Feb 17, 2005 and I am now at Day 97 past the stem cell transplant.

    This brought me down to 5-10% involvement of MM cancer cells in bone marrow biopsy and was described as a "partial response"...which is supposedly greater than 50% of bad cells went away, but not more than 90%.

    I am working with dr on next step.

    Right now the next steps looks like Thalidamide then another Stem Cell Transplant (they got enough cells for me to do at least one more transplant).

    Please feel free to e-mail me for more particulars on the Velcade/Dex treatment. I would be glad to share any of my experiences that may help you.

    I am searching for information from people that have taken Thalidamide. Particularly, I am trying to judge the risk of getting permanent neuropathy that can, as my dr discribes it, "be a disaster".

    Hi Greg, my husband has been on Thalidomide since Jan. 03. Yes, the neuropathy is permanet. He does get around, pretty wobbly, but doesn't have to use a cane, walker. He has 3 known malignant tumors pop up and will be off the Thalidomide and on the Velcade starting Tues. With all the neuropathy he already has, pretty worried how much more he can take of it. Congrats! on your success. 2 of the 3 tumors are actually in his breast and one big one on his sternum. Seems like last ditch effort and hope and pray he responds well to the Velcade. Anything else you want to know about the Thalidomide, please email me. Is there anything else you can tell me about Velcade?
  • Unknown
    Unknown
    #6
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