I am newly Diagnosed with MGUS.

WOW. Glad I just found this group. Lots of info. Like so many, my MGUS was diagnosed pretty incidentally. In October of last year, 2022. My Primary Care Provider (PCP) noted my having mentioned experiencing a bit of neuropathy in my toes (did a tuning fork test for vibration) so he said he wanted to run labs for MGUS as that is an early indication. I was like "Yeah, right, as if I could have it too?" I am a 65 y/o, thin, 6’0”, white woman with ancestry from the British Isles and no family history of MGUS/MM. Other than my age, I supposedly have none of the risk factors.

Let me give you a bit of other history that is relevant to my experience, my beloved husband, Steve died of Multiple Myeloma on 24 July 2022. He was diagnosed with MGUS in early 2017. We thought all would be fine with the reported odds of 1% per year. I now believe he was in the smoldering stage of MM and was under diagnosed by a supposed expert once in Asheville, NC - I will name names because he has moved to Charlotte and I believe he failed us = Raymond Thertulian. He never did a bone marrow biopsy to establish plasma cell levels, 24-hour urine for Bence-Jones, PET for lesions, despite initially elevated labs such as the IgA of 785 - IgA is the more aggressive MGUS/SMM. He was getting labs every 3 months and all relevant labs were elevating. Dr. T continued to say all was well. Sadly, I didn't know then what I know now. Anyway, Steve got the official diagnosis after he experience three compression fractures (CF) on 20 October 2021, he ended up with nine CFs and went from 6'2" to 5'10". It was Stage III, High Risk. The course of his illness and demise was 14 months of horrible.

Being positive is absolutely imperative. Steve wasn’t. I am determined to be positive despite mine being IgA Kappa MGUS. So, bizarre that I too have MGUS. No familial history. No known pesticide exposure. No known petroleum product exposure except a natural gas range. Just got rid of that and got an electric induction oven. Benzene, the by-product of petroleum combustion is thought to be included on the list of potential environmental exposure issues. I meet someone almost every day with MGUS. Something is going on in our environment.

So, instead of focusing on Dr. Goggle, I have a local hematologist/oncologist who is quite brilliant that I see every three months for now. I have consulted with Dr. Paul G. Richardson from Dana Farber in Boston who is very strong in the MM research realm. I will visit him again in December. He said, “Keep your stress down.” I am also on the research study out of Sloan Kettering in NYC conducted by Dr. Urvi Shah with the hypothesis that a whole food, plant based diet and/or the supplements of curcumin/turmeric may postpone the progression of MGUS / SMM to MM (NCT05640843). Clinicaltrials.gov is easy to navigate and very interesting. On top of that, I am an actively employed RN working in my hospital’s research department. Will retire within the next to nine months. I also have benefitted from my involvement with the HealthTree Foundation for Myeloma at http//HealthTree.org/myeloma.

I requested and have had a recent bone density test and have no signs of osteopenia nor osteoporosis at this time – baseline testing upon diagnosis is important. As is having the bone biopsy with FISH to evaluate genetic involvement and plasma cell levels, PET scan to rule out lesions and a 24 hour urine test. Without those you just won’t know where you truly are at in the MGUS continuum. We must be or have a strong advocate to achieve the best care.

I’m praying for healing. Living life to its fullest. Looking for the sunshine and if I can’t find it I make it.

Those are my current insights. Wishing you all well in this journey none of us chose to take. Thank you.

Hi Allstaedt57,
I am so sorry about the death of your dear husband. I really appreciate your sharing your history, knowledge and insights into your husband and your MGUS/SMM/MM experience.
I also have MGUS. May I ask what your experience has been with the Memorial Sloan Kettering study Dr. Shah is leading. I considered it, but I live a 4 hour drive from NYC and decided it would be too difficult to go there 5 or 6 times for all the monitoring. But based on your posting, I'm reconsidering participating. Thanks so much for sharing.

Best wishes,
Deborah

WOW. Glad I just found this group. Lots of info. Like so many, my MGUS was diagnosed pretty incidentally. In October of last year, 2022. My Primary Care Provider (PCP) noted my having mentioned experiencing a bit of neuropathy in my toes (did a tuning fork test for vibration) so he said he wanted to run labs for MGUS as that is an early indication. I was like "Yeah, right, as if I could have it too?" I am a 65 y/o, thin, 6’0”, white woman with ancestry from the British Isles and no family history of MGUS/MM. Other than my age, I supposedly have none of the risk factors.

Let me give you a bit of other history that is relevant to my experience, my beloved husband, Steve died of Multiple Myeloma on 24 July 2022. He was diagnosed with MGUS in early 2017. We thought all would be fine with the reported odds of 1% per year. I now believe he was in the smoldering stage of MM and was under diagnosed by a supposed expert once in Asheville, NC - I will name names because he has moved to Charlotte and I believe he failed us = Raymond Thertulian. He never did a bone marrow biopsy to establish plasma cell levels, 24-hour urine for Bence-Jones, PET for lesions, despite initially elevated labs such as the IgA of 785 - IgA is the more aggressive MGUS/SMM. He was getting labs every 3 months and all relevant labs were elevating. Dr. T continued to say all was well. Sadly, I didn't know then what I know now. Anyway, Steve got the official diagnosis after he experience three compression fractures (CF) on 20 October 2021, he ended up with nine CFs and went from 6'2" to 5'10". It was Stage III, High Risk. The course of his illness and demise was 14 months of horrible.

Being positive is absolutely imperative. Steve wasn’t. I am determined to be positive despite mine being IgA Kappa MGUS. So, bizarre that I too have MGUS. No familial history. No known pesticide exposure. No known petroleum product exposure except a natural gas range. Just got rid of that and got an electric induction oven. Benzene, the by-product of petroleum combustion is thought to be included on the list of potential environmental exposure issues. I meet someone almost every day with MGUS. Something is going on in our environment.

So, instead of focusing on Dr. Goggle, I have a local hematologist/oncologist who is quite brilliant that I see every three months for now. I have consulted with Dr. Paul G. Richardson from Dana Farber in Boston who is very strong in the MM research realm. I will visit him again in December. He said, “Keep your stress down.” I am also on the research study out of Sloan Kettering in NYC conducted by Dr. Urvi Shah with the hypothesis that a whole food, plant based diet and/or the supplements of curcumin/turmeric may postpone the progression of MGUS / SMM to MM (NCT05640843). Clinicaltrials.gov is easy to navigate and very interesting. On top of that, I am an actively employed RN working in my hospital’s research department. Will retire within the next to nine months. I also have benefitted from my involvement with the HealthTree Foundation for Myeloma at http//HealthTree.org/myeloma.

I requested and have had a recent bone density test and have no signs of osteopenia nor osteoporosis at this time – baseline testing upon diagnosis is important. As is having the bone biopsy with FISH to evaluate genetic involvement and plasma cell levels, PET scan to rule out lesions and a 24 hour urine test. Without those you just won’t know where you truly are at in the MGUS continuum. We must be or have a strong advocate to achieve the best care.

I’m praying for healing. Living life to its fullest. Looking for the sunshine and if I can’t find it I make it.

Those are my current insights. Wishing you all well in this journey none of us chose to take. Thank you.

I am amazed at your reply after all the suffering you and your late husband went thru! Stay positive and enjoy your life as best. You are a role model for taking things as they come and dealing with them Asbest as possible.
I live in Germany so habe changed my diet to plant based with fish, curcuminoids and try living healthier. I wonder what else Urvi does/recommends/ controls in the study and would be really interested to hear about the tests and recommendations!
I am 63 and have had MGUS which suddenly jumped to SMM due to a load of stress?!? In the past 2 years.
Trying to keep myself healthy and my head sane!
Regards
Mascot

Good morning Deborah.

Dr. Shah works out of MSK's Commack Clinic in Long Island if that is any easier. I fly into LaGuardia. Will be back on 4 September for two nights and my 5th visit. My last visit will be February - one year follow-up.

Yes, it has been costly, but I figure I am worth that, am still working plus with Steve gone, why not. Since I have to fly in, I fly in from Asheville on Monday and depart on Wednesday morning. I go to the hospital and pick up my stool sample package on Monday afternoon, have dinner at a favored Italian restaurant, Finestra close to the hospital and hotel - New York Presbyterian Hospital Hotel or guest facility which cooperates with MSK and is there for those of us visiting the hospitals. It's not the Ritz, but very nice and well priced for NYC.

On Tuesday morning, I preform my "duty" and head to hospital for fasting labs and to turn in my event package. You might be able to do it all on one day if you are regular. So, stool sample and fasting labs, followed by breakfast for me, and since Dr. Shah's clinics are on Wednesday, I "see" her the next day. The first meeting was face-to-face and she came into Manhattan to the Koch Center on I think 74th off of York. Hotel is on York in between 70th and 71st Street. Nice walk, no car needed. Follow-ups are video/tele-visits. You could do a lot of this from the comfort of your own home - except the labs, but MSK has a number of clinics that might allow for the labs. I have to get into NY due to Medical Licensing Laws. Dr. Shah cannot function across state lines.

After my window tele-visit, I fly home. I've been making the best of it. I joined the Metropolitan Museum and visit it while I'm there ($30 a visit vs $110 for the year and you can bring guest seemed worth it), go to St Patrick's Cathedral for mass and walk to the Met on Tuesdays. They now know me there. I love the City experience and will miss that. I pretend I'm a local. Gotta have fun.

Here's the other part that kind of bothers me... I am an RN in the Research Department of my hospital. We cover all lab, procedure, and Provider costs incurred due to the study. This study does not. In addition to my necessary travel, food, lodging expenses, I have had to pay $1492 in co-pays. I have a very good insurance policy.

Everyone at MSK has been nothing but professional, personable, and polite. Dr. Shah is brilliant and very approachable. She is involved with the HealthTree Foundation. I attended a round table she was on in Durham, NC and had alerted me to. It was SO informative and gave me hope. We will survive. We know too much and advances are happening every day. I say that as a very hopeful, 65 y/o with no current comorbidities. Having a MGUS/SMM/MM specialist on our team is imperative. Local Provider that is knowledgeable supported by a Specialized Provider (SP) on the cutting-edge. I failed Steve by not doing that. I had no clue when he got under-diagnosed with MGUS that it was probably SMM. Maybe Dr. Shah could become your SP and that would cover two things. Dana Farber in Boston is also doing great things with MM research - Paul G. Richardson is pretty impressive as well as others there. Do the research and make a sound choice that you are comfortable with.

Let me know if that is what you were thinking of as far as "what your experience has been." Best wishes. Teri

@ Allstaedt57

I’m so sorry about your spouse. I often think about how much the support I get from my husband makes navigating health issues less scary. He and I have both lost beloved spouses and have been caretakers. While that gives one a unique perspective, the experiential learning of navigating the last chapter of life with someone you love takes it’s toll. As a nurse you have seen this a lot, I suspect.
I hope you have a good support system that can cheer you on and understand your angst. It’s easier said than done…to be calm in the storm and avoid stress, as you physician so wisely advised. Nurses are wonderful caretakers and in my circle of nurse friends (I was a pediatric medical social worker) they carry so much on their shoulders. They find it hard to be cared for. I hope you are surrounded by loving friends and family and will unburden yourself as you can.
Hugs! So glad you found us. I know we will learn from you and I appreciate hearing your story.
Patty

Hi Teri, I noticed that you wished to post a URL to accommodations with your post. You will be able to add URLs to your posts in a few days. There is a brief period where new members can't post links. We do this to deter spammers and keep the community safe.

Please allow me to post it for you:
http://www.nypguestfacility.com

I stayed at the NYP Guest Facility once and was comfortable there. Staff were kind and accommodating.