1. < Blood Cancers & Disorders

CLL Watch and Wait supplements/diet

Posted by 54321kl @54321kl, 5 days ago

I have been reading studies and have spoken with a Vitamin K expert about vitamin supplements. I am wondering if anyone has taken Lysine, vitamin C, vitamin D, Magnesium, or EGCG. If you have has there been an improvement in your labs?

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marynoelle | @marynoelle | 3 days ago
In reply to @54321kl "Is your NP your primary provider? I am a Family Nurse Practitioner and when I got..." + (show)
@54321kl

Is your NP your primary provider? I am a Family Nurse Practitioner and when I got lab results it reassured me when my collaborating physician said "well if you're gonna get one it's a good one to get" I really try to keep that in mind! I spent time in the Gulf War and did see an outside hematologist/oncologist then completed all the necessary paperwork to apply for VA benefits since CLL is on the short list for service in the Middle East. I am going and have a long list of questions and requests, one being how can I see CLL specialist. I refuse to wait I firmly believe in making changes so I can do my best to delay and I feel I need a care team not just my PCP. It makes sense to just be reassured if nothing else!

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@54321kl yes, my NP is my primary provider. I live in Canada and it’s almost impossible to find a Family Doctor. Indeed I would prefer to have a Care Team. I would be satisfied to be followed by my Hematologist but he passed me back to my NP. If anything shows up in my lab reports, I will be referred back to him. Hopefully I remain “stable” and won’t need treatments, etc.

Good Luck! Hope everything works out for you.

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54321kl | @54321kl | 3 days ago

I do hope you remain stable and I also hope the NP knows when to refer you back and advocates for you. I was given a website you may be interested in consumerlab.com there is a good amount of information about vitamins and supplements. You can look at some information for free and then there is a cost for additional. I also found a good amount of information here https://cllsociety.org/whats-new-in-cll/ and lastly I am reading a book called The China Study that was recommended by a person I contacted from that website. Lots of good stuff!

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