My Self Advocacy Journey with Ultra High-Risk Multiple Myeloma

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My Self Advocacy Journey with Ultra High-Risk Multiple Myeloma

Рет қаралды 4,766

Күн бұрын

Link to Full Transcript: bit.ly/3TOLwDh
Multiple myeloma patient Lori shares her journey to diagnosis and treatment. Watch as she explains the varied symptoms that she experienced, the benefits of a second opinion and clinical trials, and her advice to other patients.
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Пікірлер: 16

@vikingwind25 Жыл бұрын

I was diagnosed with Stage 1 MM Dec. 2019 at age 68 after an ER visit from a sever fall. My induction that my Dr. and I chose together after research and consult with SCCA was Dara/Rev/Dex. I too am blessed to be close to SCCA. I am now at a Complete Remission state and on maintenance. While able, and having completed collection I have no plans for stem cell transplant. Things I have learned: 1. Be your own advocate after listening to the experts. 2. Medicare supplemental plans, not "Advantage Plans" are the best way for many people. I would be financially devastated had I chosen an Advantage Plan. 3. Stay positive and enjoy life and your loved ones.

@vikingwind25 11 ай бұрын

Hi, I live in the United States. From the MIMA trials, the indication is that you may do just as good without a stem cell transfusion. I am on Daratubamab which targets CD-38. and am doing very well. This drug is very expensive here, maybe not so much in India. I would advise you to call the International Myeloma Foundation (many videos on KZfaq). Their information is good and free. Your Doctor may benefit from what you learn. Good Luck.

@ElephantsRock19 11 ай бұрын

I'm curious why supplemental is better than advantage? Supplemental is so much more expensive every month, but maybe it's cheaper in the long run because more is covered? Thank you and all the best!

@ElephantsRock19 11 ай бұрын

I'm curious why supplemental is better than advantage? Supplemental is so much more expensive every month, but maybe it's cheaper in the long run because more is covered? Thank you and all the best!

@timlittle1286 Жыл бұрын

I was diagnosed with smouldering myeloma in 2019 in June.

@fabriziosettembrini4071 5 ай бұрын

Thank you Lori for your encouraging video. I have a question: if I am diagnosed with asymptomatic multiple myeloma and my hematologist refuses to perform FISH should I insist or not? Please I need an authoritative opinion. Thank you

@rahulsharmarrr Жыл бұрын

Sir, I am Rahul from Chandigarh, India. My father has Multiple myeloma stage 3A. Age is 74 with Bp, Diabetes and stunts in heart in 2019. His doctor is giving darzalex inj 800mg every week. Doctor is not giving BLD regime because father got chest infection after second chemotherapy of BLD plus Darzalex. So he decided to stop all other treatments. Only Darzalex 800mg is going on. Today, first cycle of Darzalex will be completed. I am not sure whether we are getting right treatment or not. Please guide me.

@devkamal7705 11 ай бұрын

Bro you are lucky one. Are you getting from PGIMer?? Do you know myeloma friends group

@rahulsharmarrr 11 ай бұрын

@@devkamal7705 no I don't know any myloma group. If you know , pls tell me.

@timlittle1286 Жыл бұрын

I would rather die from the IGA kappa multiple myeloma I have. There is no way in hell I can afford the treatments for it.

@vikingwind25 Жыл бұрын

Don't go down that road my friend. There are several organizations that will cover the expense. If you are Medicare age you have additional benefits over most employer programs. NEVER go on an Advantage Plan. Good luck and be your own advocate at all times.

@timlittle1286 Жыл бұрын

@@vikingwind25 it seems as though my leg bones are starting to get softer but that is life.

@vikingwind25 Жыл бұрын

@@timlittle1286 I don't know how you could possibly know that without measurement. Ask your Dr. for a DEXA SCAN so you will know your bone density and go from there. I believe Osteoporosis is often a partial result of longterm Smoldering Myeloma. So, I would suggest getting all your blood protein tests, Get a MM staging level from your Dr. and go from there. Don't sit around an guess. Learn as much as you can about this condition and work with our Dr.otherwise you'll drive yourself nuts.

@devkamal7705 11 ай бұрын

@@vikingwind25 where you live?? In India we are helped a lot by government. But your case is not swear as it's kappa. My case is lambda and still I do not feel like dying now after 2 years of second stage but the expense after govt help is going to make me shun the treatment. If I could not afford, I shall f k it my own way. I know my body much than anyone else.