I am newly Diagnosed with MGUS.

Patty, thank you for the supportive and sweet message. While I do have two brothers, my friends tend to be more of my support system. You have been blessed to find another spouse as widow/widowers share a sad, but special bond. In that too I am optimistic and hopeful to find someone to share my remaining years which I hope to be many and plenty. Teri

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.

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.

You are so well informed! I need to start being more involved with this journey that I started with MGUS in May this year. I will definitely ask more questions with my oncologist next month after my 3 month blood work appointment follow-up. Thank you. Keep smiling!

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.

Greetings Teri / #Allstaedt57,

Thank you so much for sharing all your wonderful insights. I'm sorry I'm so long in responding to everything you shared. It sounds like participating in the WFPBD/Curcumin study is working out very well for you. It's interesting that you've confirmed my fear -- based on talking with Dr. Shah and her assistant Ms. Castro and my insurance companies -- that my insurance wouldn't pay for some of the "gray" area tests/procedures in the consent form they sent me. I agree that it's a very interesting study, and I hope that some new treatment options evolve out it eventually. I finally decided not to participate because of the expense. Also, traveling always disrupts my normal digestion so I would need to stay several days in NYC in order to provide required "materials." I do take the same Curcumin C3 Complex by Sabinsa Corp that they recommend and try to eat mainly a plant based diet. That's the rub though, it's very hard to adhere to a WFPBD diet without support.

I haven't had a PET scan, maybe I'll request one when I see my hematologist in September. But a few months ago, I had a BMB that showed I had progressed to SMM. I consulted with Dr. Gertz at Mayo Clinic, and their pathology department reread my BMB slides, concluding that my plasma count was less than 5%. Whew! They use a different, more accurate methodology for counting the plasma cells. While Dr. Gertz is brilliant, I didn't get any advice on how to forestall disease progression. So, I may still consult with Dr. Shah or Dr. Richardson or others at MSK or DF. Having hope is so essential!

I must say you are truly amazing in the energy, drive, and optimism you show. I pray you do well and prosper. Thanks so much for writing.

Best wishes,
Deborah

Hey Deborah. Well, in reference to the WFPBD idea - since I am alone, I have chosen to subscribe to a meal plan - I rotate between Purple Carrot, Factor 75 and a new one that I am favoring is Sprinly. They all run about the same amount of money = $90 to $110 for 6 prepared, fresh meals. Focus on Vegan vs Vegetarian as the vegetarian will have dairy. I have avocado or a nut butter with sugar free fruit spread on Ezekiel bread or English muffins with coffee and non-dairy Nut Pods for my daily breakfast. Avoiding sugar is important too. So I get a weekly shipment and depending on how much you like to eat, there is a great deal of food there. I'll look into the Curcumin C3 Complex by Sabinsa Corp too. I hadn't gone there yet.

BTW, insurance is paying for the lab tests and Provider visits, but the co-pay parts are adding up. Wish the study was better funded. Hotels, flights, Ubers, food and insurance co-pays are definitely proving to be costly.

Great news about the lesser plasma cells level from Dr. Gertz at Mayo! Wish everything was standardized. I went for the three month check up with my local NC hematologist and my levels have remained stable. I am a IgA Kappa MGUS at this juncture. Praying for no progression. Keeping stress down. Walking, biking and yoga are my things to be physically active. Reducing inflammation is key.

Thanks for your informative response.

Best wishes to everyone.

Teri

Hi Teri,

Thanks for the additional information. I'm surprised you have to pay for prepared food plans. I thought the study participants in the WFPBD part of the study received free food from Plantable.

I haven't gone the prepared food route because my husband is a good and very healthy cook. We are trying to cook more recipes from healthy websites like Forks Over Knives and these sites the nutritionist at my PCP's office recommended:
https://www.bluezones.com/recipes/
https://www.pcrm.org/universalmeals/recipes
https://thebigswich.com/recipes - This one requires an invitation from someone so let me know if you would like me to try to private message you to see if I can share it.

The nutritionist also recommended these other resources, which I haven't looked at yet:

Dr Will Bulciewicz's Fiber Fueled Cookbook
https://hubermanlab.com/effects-of-fasting-and-time-restricted-eating-on-fat-loss-and-health/
Congratulations on the stable bloodwork. You are doing everything possible to stay healthy -- much more than me. So thanks for the inspiration!

Best wishes,
Deborah