I Was Diagnosed A Year Ago With MM. I Consider Montgomery, AL A Major City To Be Treated In But Wonder If I'm Getting The Best Care | MyMyelomaTeam

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I Was Diagnosed A Year Ago With MM. I Consider Montgomery, AL A Major City To Be Treated In But Wonder If I'm Getting The Best Care
A MyMyelomaTeam Member asked a question 💭

I have responded very well to treatment and after 8 months I'm stable however in reading all of the comments and resource information it's confusing in comparing ones health issue to mine because you do not have all of the persons information. I am extremely concerned the doctors here are so over worked that you are seem mostly by a Nurse Practioner rotated between 6 other ones for just one oncologist. Your visits are rushed and rarely is there time to discuss your concerns. They only want to… read more

posted December 31, 2023
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A MyMyelomaTeam Member

Larry Car T is for people that have had other treatments that no longer working . They wouldn’t start someone with Car T . I do think a lot of people do great with stem cell treatment. I did stem cell and I am doing great. I would do it again if need to. Before a stem cell treatment you have to already in remission

posted January 3
A MyMyelomaTeam Member

Greetings for Alaska I was diagnosed in March 2021. I was put on treatment I did not achieve a remission. The numbers were knocked down and I was evaluated for stem cell transplant. Even though I did not achieve remission, I was given a transplant. which improve my health greatly as I was in major pain from fractures in my spine and ribs. After the transplant I still did not achieve remission, but the numbers were much lower and my m spike was lower.
What I stress to you is try not to worry I know this is easier said than done but you need all your energy to focus on healing your body. I was 71 when I went through my transplant, I contribute my abilities to go through the high dose, chemo therapy and treatments without any major side effects because of my exercise and diet program.
I am still not in remission, but I can do everything I want to within reason, and take care of myself which is important to me. I know this is a lot of information to process but take your time ask all the questions you want. There is no bad question. I have incorporated, acupuncture, and meditation as ways to alleviate some of the stress and to deal with the pain. So I hope that this helps you. Continue to reach out to the people in this group. If they don’t know the answer. I’m sure they find it for you, but know that you are not alone. May God bless you

posted January 3
A MyMyelomaTeam Member

That is true but right now CAR t is approved for patients that have had 4 or more lines of treatment. Hopefully it will get bumped up to earlier in treatment

posted January 3
A MyMyelomaTeam Member

The Multiple Myeloma Research Foundation Website has a list of myeloma Specialists by area😉

posted January 3
A MyMyelomaTeam Member

I agree, you should see another doctor, get another opinion. I experienced the sweats....whole body sweats but did not know at the time that I had MM. I just underwent SCT and had very good results. I go back in March for my 100 day check up and getting started with follow up care. It sounds like you have had a lot of issue with bone pain, I would reach out and get another doctor. Just an idea, I did get my treatments at the Mayo clinic in Rochester. Maybe you could reach out to them to see if they would have any doctors in your area that they would recommend. Mayo clinic has been one of the best as far as SCT and the one in Rochester MN is the only one that does SCT in an out patient basis. I probably sound like I am doing an ad, but I have nothing but positive things to say so far concerning my treatments thus far.

posted January 3

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