Answer Summary
Members shared how they became more informed about multiple myeloma, with the most common advice being to read as much as possible, ask... Read more
Be careful when surfing the internet as not all information is correct and is outdated. Look at date articles were written.
I won't say I am smart about it, but I have learned a whole lot from my brother being diagnosed and researching and learning everything I could about it. Like @A MyMyelomaTeam Member said, read, read, and read some more! 😁
Also, I will add a post I wrote on my page, it sums it up perfectly:
"Besides this great community, here are some other org's that have great info. I've been following the IMF and MMRF since my brother was diagnosed in 2001, and have learned so much, hope this info might help someone else:
https://www.enroll.promisestudy.org/
https://www.myeloma.org/resource-library/patien...
https://issuu.com/international-myeloma-foundat...
https://issuu.com/international-myeloma-foundat...
I would add Patient Power from Health Central and Rare Cancer News.
HTTPS://www.patientpower.info
HTTPS://rarecancernews.com
The NIH, National Institute of Health has many articles about MM.
Sloan Kettering, Mayo Clinic etc. all the major MM Specialty Hospitals have articles.
I’m still learning. MM is a very complex cancer. Even MM Specialists don’t agree on treatments. I’m also learning that doctors rarely ever advocate taking supplements. Zinc supports the TP53 tumor suppressor gene, but I never hear them tell patients to take it. Same with K1 and K2 that tell calcium to go to the bones instead of clogging the arteries.
Paula🌹
Greetings Carozon
I hope you are doing well.
To answer your questions above is defining who are you. In others words, what makes you resilient and purposeful. I think it is healthy to pace yourself daily - one day at a time. Learn to be good to yourself - do what makes you feel good and safe.
Read about the disease and never be shy to ask your Primary Care Physician ( PCP) and all other physicians questions about your health.
Build up your inner self and confidence, read and research information you need to know.
Don't listen to unsolicited comments. Surround yourself with good unselfish people. Eat a well balanced meal, no junk food. Last but not least, always pray before you go to sleep. So, stay well, strong and enjoy life. Peace and Blessings....
True and a lot of times the everyday oncologist who sees many different cancer patients may not know some of the questions you have but Internet helps me a lot!