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Anyone else have Symptomatic MGUS?
Blood Cancers & Disorders | Last Active: Nov 28, 2023 | Replies (73)Comment receiving replies
I don’t know exactly all my lab results other than I don’t have any of the problems you mentioned ( the CRAB criteria) & my light chains are slightly elevated but ratio within the “normal range “.
I don’t know if Dr Mikhael takes international patients but I would think so since he collaborates with researchers around the world. He does a lot of second opinion consultations for reasonable amounts. He’s in Flagstaff, Arizona.
He was very kind & reassuring to me. He was happy to keep seeing me virtually every 6 months but I didn’t see the need. He didn’t recommend any interventions for me other than healthy diet/weight, exercise etc.
I’ve always wanted to visit Australia & New Zealand- hoping to this November.
All the best to you!
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That sounds really reassuring and I hope your MGUS stays stable without symptoms 🙂🌺
I have a very low light chain ratio (way outside normal range) indicating very high lambda and very low kappa.
Here is an interesting abstract (edu institutional login is possible if you’re a teacher or student) regarding independent risks associated with high lambda: search - “High-Risk Myeloma Is Demarcated By Immunoglobulin Lambda Light Chain Translocations” (I’m unable to paste links, something about being a new member).
This is where I think the classification of MGUS/SMM/MM isn’t the primary consideration for risk; I think this is where the associated light chain assays, and other involvements (like lowered non-involved heavy chains, for instance) should have greater influence on how a person is approached in their care, based on these other factors being strong indicators of both symptomatology and advancement risk.
However I would be really happy to hear any thoughts - I’m still learning 🙂
It’s a worthwhile consideration to obtain a second opinion, and depending on the cost (in the instance it may be more expensive to be an international patient) it may be advantageous to consult with Dr Mikhael considering private practice here is a lot more expensive than $300 out of pocket for around a 10-15 min consult.
I’d be looking for more than generalised info regarding diet/weight/exercise as I make all my own healthy food from scratch, using raw/fresh/unprocessed materials (I have inflammatory bowel disease [colitis] so I have been researching and applying best practices in food selection and preparation for years to avoid malnutrition, and I supplement with specific and monitored additional nutrients at risk of low absorption), and my weight has increased in line with increasing bone pain (increased by an av. 8KG while the same clothing size has become slightly looser due to inactivity and resultant loss of muscle mass from intense bouts of bone pain); here’s some info regarding bone changes that can occur in MGUS: search - “Understanding Bone Disease and Fractures in Patients With MGUS” (I’m hoping I can paste links soon).
I love New Zealand - such a beautiful place, very worth the distance to visit, lovely people. Au has some nice places in terms of landscapes and some city landmarks and buildings in some of the cities throughout the country. I hope you really enjoy the trip 🙂🙌🏻