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Newly Diagnosed with Smoldering Multiple Myeloma: Watch & wait
Blood Cancers & Disorders | Last Active: Aug 12 7:56pm | Replies (44)Comment receiving replies
@cathy56 Contact the person you spoke to and confirm the records were received. Ask them their thoughts on what your next should be. It sounds like you have all the documentation showing incorrect procedures/diagnosis. So you may need to start from first step again, which you don't want to do.
As a retired RN, you are in a better position than many, with medical knowledge. This also makes it a burden, knowing the small details. Right?! I hope you will let us know what your contact has to say.
As an aside, the International Myeloma Foundation offers a virtual smoldering myeloma support group, the next one is in January 2024. The patient advocate who facilitates it is a retired oncology nurse from Mayo Clinic [Rochester, MN]. Here is the link to get on the email list: https://www.myeloma.org/smm
Ginger
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I made error it was k1 67 with multiple c + markers that showed not lambda kappa on bone biopsy . But I am not sure if I am advocating for myself correctly but was a great advocate for my patients! I should of made sure my medical records were transferred to different specialties as I think this is were the issues arise and why I was given wrong cancer PET scan 2 months ago and the radiation onc was unaware of fibula cancer Mets dx as he was looking for some plasma type cancer and only scanned knees up! I also want the Quebec Platelet Disorder tested and my advanced NASH !
You see it is too many things at this point ! My only hope is Mayo as I know they care for the patients wellbeing and being a former RN I feel makes my situation worse I feel as I had one specialist tell me “ RNs know enough to be dangerous “ how cruel as I never come off as a professional in med field as in my state of health I am far from medical knowledge as I am not a doctor but a sick patient only wanting answers!
Thank u for your response