Does anyone else have MGUS?

@karishmananda
Your mom‘s blood analysis is very similar to mine. I have been diagnosed with MGUS based on my blood analysis. I have opted not to have a bone biopsy unless my numbers increase significantly. MGUS is a condition that is non-cancerous. It is a precursor condition to multiple myeloma and some other blood disorders. I hope never to get any of that.
The chances of progression to a blood cancer are very low. One percent per year I will post some information about it in the comments below.
My Kappa free light chains were inching up and a year ago was at 113.8. I started taking turmeric, which I’ll talk a little more about. It is very poorly digested so I take it in curcumin form. It brought my Kappa free light chain down to 88.8 in 6 months. At least that’s what I attribute it to. I did not change my diet or exercise patterns and introduced the curcumin. I’m going to see my hematologist/oncologist on 2 January so we’ll see what he says. He kind of rolled his eyes when I told him I was going to take it. As an empiricist, he wants more data to support the assertion that turmeric can alter the trajectory. I totally agree, but I’m very happy with the results that I have achieved. I’ll let you know if my numbers continue to go down.
So I would not be alarmed by her blood analysis. MGUS is a “watch and wait“ kind of disorder. She should go in for blood analysis on regular basis to make sure that there is no progression. Otherwise, she should live her life and enjoy every day. If the statistics ring true for her, she may never progress to a blood cancer. She will get very good medical attention because they will watch her carefully and MGUS for most people has no symptoms.
You have choices about a bone biopsy. Many have had them. I personally have not by choice. I am in agreement with my oncologist that we can wait. If there are any signs of progression, then we will do the bone biopsy. I get periodic scans of my whole body to look for bone lesions, which would be a telltale sign that the disease has progressed. So far I’ve had none of that. I was diagnosed three years ago.
I hope this is somewhat reassuring to you. It’s good to do some reading about MGUS and and then you are better prepared to talk to her physician when you have appointments.
I am not a physician so he or she may have different ideas about this, but I’m giving you my perspective as a patient.
Try to stay calm in your heart amid the chaos of a new diagnosis.

What did your hematologist/oncologist say the next steps would be?

MGUS can present in many forms, including arthritis inflammation of joints and neuropathy. Check with you doctor on this. I have polyneuropathy (MGUS proteins hit my peripheral nerves, hasn't gotten worse over the years). Stretching and strengthening exercises help with joint inflammation.

I was diagnosed with MGUS in 2015 at age 64. Since that time, my numbers have been stable. I will post later what they are. My question has to do with the above posting mentioning arthritis inflammation. I have pain in multi areas of body but not in the joints. More like sore areas in ligaments and muscles and random tissue areas. Pain in back, hip and SI areas. Anyone else experiencing this?

@karishmananda
Your mom‘s blood analysis is very similar to mine. I have been diagnosed with MGUS based on my blood analysis. I have opted not to have a bone biopsy unless my numbers increase significantly. MGUS is a condition that is non-cancerous. It is a precursor condition to multiple myeloma and some other blood disorders. I hope never to get any of that.
The chances of progression to a blood cancer are very low. One percent per year I will post some information about it in the comments below.
My Kappa free light chains were inching up and a year ago was at 113.8. I started taking turmeric, which I’ll talk a little more about. It is very poorly digested so I take it in curcumin form. It brought my Kappa free light chain down to 88.8 in 6 months. At least that’s what I attribute it to. I did not change my diet or exercise patterns and introduced the curcumin. I’m going to see my hematologist/oncologist on 2 January so we’ll see what he says. He kind of rolled his eyes when I told him I was going to take it. As an empiricist, he wants more data to support the assertion that turmeric can alter the trajectory. I totally agree, but I’m very happy with the results that I have achieved. I’ll let you know if my numbers continue to go down.
So I would not be alarmed by her blood analysis. MGUS is a “watch and wait“ kind of disorder. She should go in for blood analysis on regular basis to make sure that there is no progression. Otherwise, she should live her life and enjoy every day. If the statistics ring true for her, she may never progress to a blood cancer. She will get very good medical attention because they will watch her carefully and MGUS for most people has no symptoms.
You have choices about a bone biopsy. Many have had them. I personally have not by choice. I am in agreement with my oncologist that we can wait. If there are any signs of progression, then we will do the bone biopsy. I get periodic scans of my whole body to look for bone lesions, which would be a telltale sign that the disease has progressed. So far I’ve had none of that. I was diagnosed three years ago.
I hope this is somewhat reassuring to you. It’s good to do some reading about MGUS and and then you are better prepared to talk to her physician when you have appointments.
I am not a physician so he or she may have different ideas about this, but I’m giving you my perspective as a patient.
Try to stay calm in your heart amid the chaos of a new diagnosis.

What did your hematologist/oncologist say the next steps would be?

Hi Patty. I was diagnosed 20 months ago and have been reading your posts since then and appreciate your willingness to share your experience. I also started taking circumin several months ago. I figured it can't hurt. Would you be willing to share the dosage you are taking? I know in some studies they have used very high doses. I have started with just 600 mg/day to make sure I didn't experience any side effects.

@scalm
Welcome to our Mayo Clinic connect group! I was a little reluctant to start any turmeric dosage because I have celiac and diabetes type two. I take metformin which makes my digestive system kind of cranky sometimes. The pharmacist attached to my primary care practice sat down with all my medication’s and looked for any interaction that would cause me trouble. Finding none, I started out with 1000 mg a day. The first few days I had some Gastro issues but my system evidently decided not to fight this with much bigger and within three or four days I was having no side effects from the thousand milligrams. I have stayed with that because I got good results when I went for my semi annual bloodwork six months ago. I also read with interest the experience of other members in this group who have also had success with turmeric. I’ve added a picture of what it is that I am taking. This has worked very well for me.
You might have your pharmacist or physician’s nurse take a look at any medications that you’re taking now to see if there might be a negative interaction with any of them and the turmeric just to be safe.
I’m so glad you found this forum and I hope that you will contribute with your experience because it’s so benefits other members. And I hope that you find the information helpful. Will you let us know how your MGUS journey is going?

Cute dog for fun. 😂

@scalm
Welcome to our Mayo Clinic connect group! I was a little reluctant to start any turmeric dosage because I have celiac and diabetes type two. I take metformin which makes my digestive system kind of cranky sometimes. The pharmacist attached to my primary care practice sat down with all my medication’s and looked for any interaction that would cause me trouble. Finding none, I started out with 1000 mg a day. The first few days I had some Gastro issues but my system evidently decided not to fight this with much bigger and within three or four days I was having no side effects from the thousand milligrams. I have stayed with that because I got good results when I went for my semi annual bloodwork six months ago. I also read with interest the experience of other members in this group who have also had success with turmeric. I’ve added a picture of what it is that I am taking. This has worked very well for me.
You might have your pharmacist or physician’s nurse take a look at any medications that you’re taking now to see if there might be a negative interaction with any of them and the turmeric just to be safe.
I’m so glad you found this forum and I hope that you will contribute with your experience because it’s so benefits other members. And I hope that you find the information helpful. Will you let us know how your MGUS journey is going?