I just got diagnosed 2 months ago for stage 2 myeloma I'm getting the shots in the stomach twice a week and I take remlid at night the chemo pill before bed time I'm starting my 2nd 21 days Friday but yes they have started me aggressively on medicine . I talk to Dr they said there is a possibility of a cure in 5 years . But it's rare for me i just turned 38 . But keep doing the lords work 🙏 and the information has really helped cause I got really depressed 2 months ago now im being social seeing friends that are supportive.
I started with Daratumumab, Velcade, Thalidomide, and Dexamethasone. Within weeks I suffered with severe peripheral neuropathy. Velcade and Thalidomide were stopped immediately. My paraprotein level was at 79%. Daratumumab and Dexamethasone alone reduced my paraprotein level to 0%. Daratumumab is amazing.
How do I know what type of multiple myeloma I have. I went from no detection of mm protein till my doctor said it's back with a vengeance? What does that mean and what can I do about it. I am taking velcade plus steroids for chemotherapy once per week.
Dr. Drurie, why is the standard of care which includes stem cell transplant the same for a newly diagnosed 38 yr old multiple myeloma patient vs a newly diagnosed patient in their 60's ? Why are the 30 year old regimes being used ? What is your institution doing to change the mantra that this is an elderly person's disease while very young people are being diagnosed with this debilitating disease ?
We feel so blessed having the medical and community support. I am so hopeful that mass spectrometry will be instituted for the assessment of plasma. Just having it approved does not make it available, the centers have to add it to their configurations. What is your feeling on the adoption?
I have multiple my Loma was just diagnosed and I need a second opinion and I need help from an oncologist or hematologist in Regina Canada's dispatch one
Hi, Emily, our dedicated myeloma information coordinators are here to provide support and answer any questions you may have. Feel free to call our InfoLine at 1-818-487-7455 or email us at infoline@myeloma.org. We're committed to helping you navigate your myeloma journey.
Dear sir.. I was diagnosed M.M in '2018... And I had a born marrow transplant in 2020. After that I had Thelidomide for 24 months . Then the report of seram proteen electrophoresis was nomal , giv medicine was stoped.... now I m spending nomal life without medicine .. Give me an advice what can i do further .. Thank you.
That sounds really good however for someone like me who has now been taken off of the rev limit maintenance and my numbers are continuing to go back up tremendously and additionally it doesn't solve the nerve damage problems that I've already sustained what is there in for my condition?
Sir clear my doubt. I have no symptoms of myeloma but doctors say to take medication. If it doesn't start in my body and if I use the medicine it is something in the future
I have two tumors with MM. however my biopsies show no MM in my marrow. This is a rare form of MM. i need help before my drs just watch me die or it’s too late ! Any one !?
@@alrahbimom Medicaid is the problem. If possible, try to get a call center from home type job where benefits start immediately and then be your own advocate. Have a video like this cued up when your Dr walks in the room. I just got diagnosed and if my Dr isn't aggressive, I'll find one who is. Good luck to us both...
I just got diagnosed 2 months ago for stage 2 myeloma I'm getting the shots in the stomach twice a week and I take remlid at night the chemo pill before bed time I'm starting my 2nd 21 days Friday but yes they have started me aggressively on medicine . I talk to Dr they said there is a possibility of a cure in 5 years . But it's rare for me i just turned 38 . But keep doing the lords work 🙏 and the information has really helped cause I got really depressed 2 months ago now im being social seeing friends that are supportive.
I started with Daratumumab, Velcade, Thalidomide, and Dexamethasone. Within weeks I suffered with severe peripheral neuropathy. Velcade and Thalidomide were stopped immediately. My paraprotein level was at 79%. Daratumumab and Dexamethasone alone reduced my paraprotein level to 0%. Daratumumab is amazing.
I am 10 years post K/R/D treatment for HRSMM and continue to be MRD Negative at this point (pending recent BMB testing) Feeling blessed!
wow.
amazin' how much plasma cell they found first diagnosed? and do u got a asct?
What type of myeloma. ?
@@natashab3412 Lambda light chain, 17p (p53 gene deletion) 1q gain. Sorry for the delay, just now seeing your question.
@@gthhnmjmjmtyjjj , sorry for the delay, just now saw this. MGUS first, then up to 11% and 21% at time of treatment but 17p deletion with 1Q gain.
How do I know what type of multiple myeloma I have. I went from no detection of mm protein till my doctor said it's back with a vengeance? What does that mean and what can I do about it. I am taking velcade plus steroids for chemotherapy once per week.
Sir you are doing great service for humanities. God bless you.
Sure, greetings from mauritius
Dr. Drurie, why is the standard of care which includes stem cell transplant the same for a newly diagnosed 38 yr old multiple myeloma patient vs a newly diagnosed patient in their 60's ? Why are the 30 year old regimes being used ? What is your institution doing to change the mantra that this is an elderly person's disease while very young people are being diagnosed with this debilitating disease ?
We feel so blessed having the medical and community support. I am so hopeful that mass spectrometry will be instituted for the assessment of plasma. Just having it approved does not make it available, the centers have to add it to their configurations. What is your feeling on the adoption?
diaginosed 2022, july, smouldering, there is hope yet,
Go to stem cell transplant as soon as possible .
I have multiple my Loma was just diagnosed and I need a second opinion and I need help from an oncologist or hematologist in Regina Canada's dispatch one
I'm stage 3 had a fractured vertebrae and surgery. I'm 72 years old and in great shape, is 5 years a typical survival rate.
Thank you for the information,,🙏
My father also but but he’s cancer therapy did work.But hè died from a influenza virus in the hospital,and I think my brother has infected him😢😢😢😢.
I have symptoms. I have know been diagnosed with smoldering multiple myeloma. Can symptoms make a difference in my diagnosis?
Hi, Emily, our dedicated myeloma information coordinators are here to provide support and answer any questions you may have. Feel free to call our InfoLine at 1-818-487-7455 or email us at infoline@myeloma.org. We're committed to helping you navigate your myeloma journey.
Thank you
Great news thank you
Hope is life. Regards from mauritius
Thank you for this info, and for providing hope!
Dear sir.. I was diagnosed M.M in '2018... And I had a born marrow transplant in 2020. After that I had Thelidomide for 24 months . Then the report of seram proteen electrophoresis was nomal , giv medicine was stoped.... now I m spending nomal life without medicine .. Give me an advice what can i do further .. Thank you.
That sounds really good however for someone like me who has now been taken off of the rev limit maintenance and my numbers are continuing to go back up tremendously and additionally it doesn't solve the nerve damage problems that I've already sustained what is there in for my condition?
Sir clear my doubt. I have no symptoms of myeloma but doctors say to take medication. If it doesn't start in my body and if I use the medicine it is something in the future
I don't feel that the therapy that I am receiving now is benefiting my life I need help
My father died recently due to the multiple myeloma 😭😭😭
Sad to hear that.
Also sad to hear that🙏🙏🌵
My mother olso died due to mulripl myeloma. İt is very sad.😥😥😥
Terrible disease I'm so sorry to hear this
I’m so sorry.
I had a great dr. My health made me move to Louisiana where the medicade drs do not know what to do with me. Meanwhile I wait n I’m sick.
I have two tumors with MM. however my biopsies show no MM in my marrow. This is a rare form of MM. i need help before my drs just watch me die or it’s too late ! Any one !?
@@alrahbimom Medicaid is the problem. If possible, try to get a call center from home type job where benefits start immediately and then be your own advocate. Have a video like this cued up when your Dr walks in the room. I just got diagnosed and if my Dr isn't aggressive, I'll find one who is. Good luck to us both...