Could we talk about anxiety with MGUS

There are many who share on MGUS. Go up into the search bar and put MGUS in. That is the best place to start and see who else has what you have and how they deal with it.

I’m sure you will receive numerous responses from our members but I will tell you how I deal with my health anxiety in regard to MGUS. You need to be your own advocate and write down questions you need answered when you see your oncologist because in my experience, most doctors today are just in too much of a hurry. Gone are the days when a doctor asked you about your home life, your diet, your concerns or your exposures to toxins. If you search back through some posts on MGUS in the forum you will find people who have had success controlling or reversing MGUS through a plant based diet and supplements. There are ongoing clinical trials at Memorial Sloan Kettering hospital with that exact protocol. Be assured that there are steps you can take to change the course of this diagnosis. Take this as an opportunity to examine your lifestyle and go beyond just controlling this diagnosis- instead to living your best life focused on giving your body all it needs to excel whether it means joining a gym or an exercise group or just setting aside the time every day to engage in a physical activity outdoors such as walking in nature. Try to train your thoughts to focus on the positive such as “wow, I walked 3 miles today and it felt so good and I am looking forward to tracking my activity on paper because it gives me a sense of accomplishment.” Set goals for whatever activity you enjoy because it gives you a Plan and you are then taking control of small things every day that can change the course of your life. Unless you are a vegetarian, make changes in your diet and your body will thank you in other ways as well. There is a saying “ The food you eat can be either the safest and most powerful form of medicine or the slowest form or poison.” Focus on gratitude every day and try every day to be the most positive person you know. Love and blessing to you.

I am 66 years old and was diagnosed in 2022. I too was filled with anxiety, reading everything, dreading lab draws.
Overtime, I decided that I cannot control certain things. I can control diet, exercise, and trying to find joy each day in life.
I think my outlook did help me overall.
Yoga, meditation, therapy are also options. I am also on Prozac which has helped as well.
Last fall I was diagnosed with breast cancer, had lumpectomy and radiation.
We never know what life has in store for us. Each day is a blessing. Control what you can and everything else may fall into place.
Wishing you peace❤️

With MAGUS there are no symptoms. Wait and see approach. M proteins present but not significant. That’s the worst part of this disease. There really is nothing to do. I have SMM. Which is a step up closer to MM. Again it’s a waiting process. How do we deal with this ticking time bomb? Know that you will be tested each year or 6 months in my case. My case it’s been stable for 1 year. Catching this early in the MAGUS stage is a real good thing. You can have this condition for the rest of your life which is again a good thing. MGUS does not affect you physically. Mentally it’s a challenge. But gain the confidence that you’re on top of it. Monitoring it. There are cutting edge clinical trials available but the studies need certain criteria for you to get in. I tried to get into the Mayo trials but I am just over the threshold of MAGUS to SMM. So I did not have high enough lab values to qualify. Very few MAGUS patients ever develop SMM.

@amyboylan1
First of all hugs. You’re not alone. It is unnerving to receive a diagnosis like MGUS. Many of our members have known that they have MGUS for decades. Who knows when I first got that pesky M paraprotein in my blood, but I was diagnosed accidentally as most of us are three years ago.
It’s easy to focus on the elephant in the room, which is that MGUS could morph into smoldering multiple myeloma or multiple myeloma. But statistically, it probably won’t. So I had to work on changing my focus from that to the actual benefits I receive because I am an MGUS patient.
I am mindful about the food I eat and trying to live a healthy lifestyle. After I discussed it with my doctor and the medical clinic pharmacist, I began taking curcumin (turmeric) and vitamin B and supplements.
I get bloodwork and visit with my hematologist/oncologist every six months and at least annually I get a CT… Bone scans to check for lesions. My blood work includes kidney and liver function analysis as well. I feel that I get the best medical care of anybody I know.
It sounds like you have a lot of confidence in your hematologist/oncologist. If you feel comfortable doing so, I would tell her that you feel that she is reluctant to answer your questions. I like the suggestion to write your questions down. That way she knows that you are serious about getting an appropriate response. Physicians should answer all the questions.
My hem/onc doc didn’t even sit down my last appointment. While that is good that he feels he has others in greater need than mine, it’s my turn to have him look at the data with me. I told him, “sit down. Catch me up on my data. Take a load off.” He did.
I found it helpful to have him go through my data with me and tell me at what point he would consider a threshold of concern and consider treatment. Knowing that helped me to relax. Those numbers really should be different for everybody based on coexisting conditions and overall health.
I’m not religious nor addicted, but I’ve always thought that there is great wisdom in the serenity prayer and people being able have the wisdom to know what they can and cannot change. I may be stuck having that pesky M paraprotein in my blood, but I will not let it define me. I will live my life and enjoy each day.
I’m so glad you asked our members and I hope that lots contribute to this discussion. Will you let us know what you find helpful and what works for you?

Thanks so much for your reply.
I appreciate it. I also have a ratio that is not 0

Thank you so much for your response.

Thank You! I’m wondering about a plant based diet. I’m having trouble coming up with food options.

When you say your ratio is not zero is that the lambda/kappa ratio? Also some supplements do help but it’s not clinically proven. Most supplements are over blown in what they can do. Not regulated very well. What are things to do to keep us healthy. Physically. Just staying active. Eating a balanced diet. Not drinking ETOH to excess. Common sense things. What may play into all this is the mental aspect of knowing and not doing. Knowing you have this but can’t do anything to turn it around. MAGUS can stick around for years or even your entire lifetime. It may never be more than what it is today. Have a wonderful day

@amyboylan1 This is a good topic, and one you have already received solid responses to. While I work with multiple myeloma now, there was a short time I did have MGUS. Let me tell you some thoughts, please.

While MGUS was formally diagnosed in 2018, I suspect it had been there for some time, just overlooked by my HMO. My hem/onc at that time was well-versed, and comforting with the quarterly visits. In mid-2019, just as I prepared to move 800 miles away, came the SMM diagnosis. I had my first appointment with my new hem/onc within a week of moving here, and I have been with him since then. In 2020 my numbers indicated advancement to MM. There was just so much going on in my life at that time, I truly didn't have the bandwidth to get too anxious! As my profile says, "I am an overachiever" and the rapid succession from MGUS to SMM to MM is absolutely not the normal.

Anyone with a chronic condition is going to face anxiety. From "am I eating the right things" to "is this okay to eat" to "am I pushing myself too hard" to "is this doctor doing all they can for my situation" to "how can I do better". I believe it is a common spot to be in, and shows we are thinking about ourselves. We don't want to dwell on anything to the extent of exclusion of anything else, but we want to understand and monitor the situation. The simple truth is that few people advance to the SMM stage, and if they do, it takes a long time.

We find what works best for us in our own unique health situation. The foods that are healthiest and beneficial for us, what level of exercise and movement has the best results, how to keep our stress levels down, etc. We might be dealing with other health concerns too, and everything is taken into account. Anxiety is part and parcel of being human.
Ginger