Could we talk about anxiety with MGUS

@steveutnv you can always ask for sedation.
I’ve opted to wait on a BMB. Not every treatment facility recommends them until a certain threshold is met. My doc and I have discussed. If my numbers progress significantly I will reconsider.

Conscious sedation and technique for bone marrows. We have a traveling Pathologist and that’s all they do. Uses a drill to aspirate the core and biopsy. Touch smears and possible special studies. Next patient. Blood draw is also involved. Has to be done is OR cause of anesthesia. The Pathologists does numb up the site with Lidocaine. So after you leave about 2 hours later a little sore but not bad. I’ve assisted in doing these. And had one done to me last year.

I would get care at Mayo. Their myeloma doctors are the experts.
I have MGUS and I drive 1350 miles one way for care and have been doing this since 2002.

@hsminc Wow! I thought my driving 2.5 hrs each way was a lot! Fortunately, my oncologist for multiple myeloma is Mayo Clinic-trained.
Ginger

“Trained” is not the same as being there, unfortunately.

I was diagnosed with MGUS approximately 20 years ago and was being regularly monitored every 3 months. Included in the monitoring were blood tests, full body x-rays, a couple of bone marrow biopsies, ct scans, even a pet scan. Even though I had MGUS, I was being regularly monitored for potential Multiple Myeloma. This situation basically remained the same until April 2023 at which time I learned that my paraproteins had transitioned, not into multiple myeloma, but rather an extremely rare form of Non-Hodgkin's Lymphoma, an LPL specifically named an IgG-secreting Lymphoplasmacytic lymphoma. The treatment for this is the same as it would be for Waldenstom's Macroglobulinemia. Armed with this new information, I found myself scheduled for 6 cycles of Bendamustine-Rituximab chemotherapy starting the first of May 2023. I completed 4 cycles of chemotherapy when my neutrophil level basically disappeared. Due to this, I had to take daily injection of Filgrastim for 4 successive days in the hopes that would help raise my neutrophils to a level appropriate to continue with cycle 5 of chemotherapy which is precisely what happened. However, just before it was time for my 6th cycle of chemotherapy, my oncologist informed me that this chemotherapy had minimal effect on me (my IgG paraprotein) and had actually stagnated and plateaued at a level much below desired so my 6th cycle was cancelled. As of the start of November, I was transitioned to a new therapy, that of a BTK Inhibitor (a type of drug that blocks the activity of a protein called Bruton tyrosine kinase (BTK), which is crucial for the development and function of B cells. BTK inhibitors work by interfering with the signaling pathway that allows B cells to activate and multiply; hence, hindering cancer cell growth. For the past 15+ months, I take 4 - 80mg capsules of this BTK Inhibitor every day. The specific name of the BTK Inhibitor I take is called Zanubrutinib (Brukinsa). Currently, even though the levels of my IgG remain relatively high, I am stable as the Zanubrutinib is not allowing my IgG paraprotein levels to progree or rise; however, Zanubrutinib is not causing my IgG paraprotein levels to regress or decrease either. If things remain as they currently are, I would be taking Zanubutinib for the rest of my life. However, it is possible that Zanubrutinib may stop being effective and, at that time, I would be placed on nother drug. When I was doing chemotherapy, I had to go the hospital but, now that I am using Zanubrutinib, I don't have to go to the hospital as I am able to take these capsules daily at home.

How are you feeling? Do you have energy?

@hsminc Fortunately, the Mayo Clinic has excellent community partners in many different cities. Many patients are unable to travel for care, but have local physicians who can share information and seek consultation from Mayo Clinic docs. There are some very skilled clinicians among this group.

Hi I also have been diagnosed with MGUS I have so many other symptoms and issues with like liver, heart, kidneys I worry about my MGUS progression also I get my blood work with my oncologist every 6 months and I'm so worried for it to progress into mm

I am also wondering about plant based food