Interesting Info About Blood Tests Versus Bone Marrow Biopsy From Dr. Drurie And The IMF.
https://youtu.be/4DbgZesjnKA?si=KleH5SHc0j3T22uU
*This video is about one year old, so hopefully those tests are out now. I know mass spec was only research based prior, but is now out for clinical use, but only very limited usage due to cost. I get it because of a research study I enrolled in through Dana-Farber: https://www.enroll.promisestudy.org/ That makes me feel better about not yet having a bone marrow biopsy, as mass spec is more sensitive than an SPEP. Also that you can do DNA… read more
@A MyMyelomaTeam Member No ma'am, no transplant, I'm only MGUS right now, trying to slow/stop progression by eating healthy, healthy lifestyle, taking supplements, and most of all, prayer, and a strong faith!
I certainly don't understand it all, I just do a lot of research and learned many things from all the years of studying and trying to learn about myeloma since 2001 when my brother was diagnosed, now with me being MGUS.
I would suggest to all to go to my page, check out the links I have posted for MMRF, IMF, and Health Tree. Besides this great community, these others have a ton of helpful people info just waiting to help you!
Here are a couple of links that might be helpful:
https://themmrf.org/diagnosis-and-treatment/tre...
https://www.ninlaro.com/lab-test-tracker
🕊️🙏❤️🕯️
Ditto!!!...on the expense but that's great you were part of the study
The video about future blood testing. is interesting. I hope next year does bring those three tests into use.
I don't go into MMRF enough
Hi Kathryn - Thanks. It’s what everyone deserves. I’m a good researcher and with the difficulties of my original Induction, I became very motivated to learn and get very involved with my treatments.
I’m convinced the Plant Based Diet and Supplements have been the best thing that I’ve ever done.
I’m also fortunate to have the trust and respect of my Onc that he recommends but let’s me be in control of what I will and won’t do. Many others simply refuse to allow this kind of involvement from the patient- telling them my way or go away.
I’m being very careful with getting Full Monthly Labs and quarterly clonoSEQ MRD blood tests. I get the results emailed to me even before my Onc has reviewed them.
I’ve talked with my Onc and my AON corporate Nurse. They both say it’s all being controlled by Pharma and they’re not going to change anything- there’s just too much money involved
Time may prove my choices wrong but I can’t see how I can have excellent Labs including all related MM and infection markers, feel so very well and be wrong.
I started from a very bad diagnosis and now I consider it history, not a chronic illness that needs ongoing treatment.
The FB site - Beating MM with a Naturopathic Support is where I started my research. Dr Brandy’s $10 EBook has been very helpful. NutritionFacts. Org is a great resource. I now have an account with ConsumerLabs. They test Supplements. NOW brand constantly rates highly.
Does Anyone Here Go To MD Anderson? I Have My First Visit Next Week. All Brand New. Can Someone Give Me Insight On What To Expect
Has Anyone Had The New Bloodflow MRD Test?
Can Someone Explain To Me In Easy Terms If Free Lambda Is High? And Also Free Light Chains. Thanks