Our staff of Information coordinators are here for you for any personal questions you have about myeloma. Please call or email so that we can help you. You can contact the IMF InfoLine by phone at 1-818-487-7455. You can also reach them via email at InfoLine@myeloma.org.
We are recently diagnosed with Multiple Myeloma this past August 2024. Always interested in the latest news. We live in beautiful San Diego, Ca. It's my spouse who currently is being treated. We are working toward having a bone marrow transplant up a City of Hope next month January 25 🤞. We are VERY thankful to all involved that developed treatments and volunteers in past trails to help in the Life journey of getting closer to a Cure. We are doing well because of the hard work and dedication. Thank you from the bottom of our hearts. Keep up the amazing work!
@annamarieroach342 Thank you so much for your comment. Lots of exciting developments in myeloma from ASH 2024. But we are always pushing for more. Dr. Joe will be sharing more videos about the latest research in the weeks to come. We are here for you and your spouse if you have any questions or are looking for supportive resources. US & Canada: 1-800-452 CURE (2873) Worldwide: 1-818-487-7455 or e-mail us at infoline@myeloma.org
I have been diagnosed with a plasmacytoma in my right humerus bone in April of 2024, and have just been told that the odds are quite high that it might turn into multiple myeloma down the line. Now I try to prepare myself for what sounds almost inevitable to come my way.
I have ISS stage III Myeloma. I started taking Daratumumab, Bortizemide, Thalidomide and Dexamethasone. My Paraprotein level was 79%. Bortizemide and Thalidomide had to be stopped because I suffered with serious peripheral neuropathy. Daratumumab (and Dexamethasone) took my Paraprotein level to 0%. I then had a T cell transplant. I am now on maintenance therapy with Lenalidomide. Daratumumab and Lenalidomide are wonder drugs.
Hi @FOTOMOTOGP We are so sorry to hear of your diagnosis, but glad to hear you are doing well with treatment. There are lots of exciting developments in myeloma. But we are always pushing for more. We are here for you if you have any questions or are looking for supportive resources. US & Canada: 1-800-452 CURE (2873) Worldwide: 1-818-487-7455 or e-mail us at infoline@myeloma.org
One could look into the research that tends to show a relationship of MM to Vitamin D deficiency . A smart person would get their VD level up to 50 ng/ml. Just a suggestion. Mediterranean diet. Avoid all junk food. L-Lysine is another key.
Hi Shabbir, please reach out to us with your questions. Our staff of information coordinators are here to assist you. Call us at 1-818-487-7455 or e-mail us at infoline@myeloma.org
I have had multiple myeloma since 2005. I was just diagnosed with AML and was told I have months to live. Was there anything at ASH and wondering if there was something that could help me.
@rmcellig we so sorry to hear this. We will ensure Dr. Joe gets this question. But please reach out to our staff of information coordinators as well so that we can further assist you more personally 1-818-487-7455 or e-mail us at infoline@myeloma.org
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Our staff of Information coordinators are here for you for any personal questions you have about myeloma. Please call or email so that we can help you. You can contact the IMF InfoLine by phone at 1-818-487-7455. You can also reach them via email at InfoLine@myeloma.org.
We are recently diagnosed with Multiple Myeloma this past August 2024. Always interested in the latest news. We live in beautiful San Diego, Ca. It's my spouse who currently is being treated. We are working toward having a bone marrow transplant up a City of Hope next month January 25 🤞. We are VERY thankful to all involved that developed treatments and volunteers in past trails to help in the Life journey of getting closer to a Cure. We are doing well because of the hard work and dedication. Thank you from the bottom of our hearts. Keep up the amazing work!
@annamarieroach342 Thank you so much for your comment. Lots of exciting developments in myeloma from ASH 2024. But we are always pushing for more. Dr. Joe will be sharing more videos about the latest research in the weeks to come. We are here for you and your spouse if you have any questions or are looking for supportive resources.
US & Canada: 1-800-452 CURE (2873) Worldwide: 1-818-487-7455
or e-mail us at infoline@myeloma.org
I have been diagnosed with a plasmacytoma in my right humerus bone in April of 2024, and have just been told that the odds are quite high that it might turn into multiple myeloma down the line. Now I try to prepare myself for what sounds almost inevitable to come my way.
I have ISS stage III Myeloma. I started taking Daratumumab, Bortizemide, Thalidomide and Dexamethasone. My Paraprotein level was 79%. Bortizemide and Thalidomide had to be stopped because I suffered with serious peripheral neuropathy. Daratumumab (and Dexamethasone) took my Paraprotein level to 0%. I then had a T cell transplant. I am now on maintenance therapy with Lenalidomide.
Daratumumab and Lenalidomide are wonder drugs.
Hi @FOTOMOTOGP We are so sorry to hear of your diagnosis, but glad to hear you are doing well with treatment. There are lots of exciting developments in myeloma. But we are always pushing for more. We are here for you if you have any questions or are looking for supportive resources.
US & Canada: 1-800-452 CURE (2873) Worldwide: 1-818-487-7455
or e-mail us at infoline@myeloma.org
One could look into the research that tends to show a relationship of MM to Vitamin D deficiency . A smart person would get their VD level up to 50 ng/ml. Just a suggestion. Mediterranean diet. Avoid all junk food. L-Lysine is another key.
So I should take a vitamin D supplement and L-Lysine? I do not have multiple myeloma yet, but was treated for a plasmacytoma last year.
Julie from the uk
Daratumumab is very expensive for patients in third world countries. Any alternate molecule available?
Hi Shabbir, please reach out to us with your questions. Our staff of information coordinators are here to assist you. Call us at 1-818-487-7455 or e-mail us at infoline@myeloma.org
I have had multiple myeloma since 2005. I was just diagnosed with AML and was told I have months to live. Was there anything at ASH and wondering if there was something that could help me.
@rmcellig we so sorry to hear this. We will ensure Dr. Joe gets this question. But please reach out to our staff of information coordinators as well so that we can further assist you more personally 1-818-487-7455 or e-mail us at infoline@myeloma.org