Is there any evidence that progression of MGUS or SMM is slowed by dietary changes? Avoidance of types of food? Addition of specific spices to the diet?
Interested in more discussions like this? Go to the Blood Cancers & Disorders Support Group.
Hi Ginger, I am sorry to hear that you are on chemotherapy. I hope that you are feeling better soon. My M gradient has been rising steadily over the years, and faster over the past 2 years . How were your symptoms before chemotherapy? Did you have any fractures?
All the best
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@mascot No, I did not have any fractures they can pinpoint. I had many testing procedures including nerve conduction study [definitely not for the weak-hearted!] in both legs, MRIs, CAT scans and X-rays. There is nerve involvement in my left hip area that causes weakness and contributes to the neuropathy of my left leg and foot.
As you have no doubt read, everyone is a bit different even when we are in the same boat. Being an overachiever, I progressed fairly rapidly through MGUS and smoldering myeloma, to the myeloma. As a chronic kidney disease patient, now on dialysis, there was that factor also playing into everything.
Have you had fractures?
My journey began with a mother who had very rare autoimmune disorders, diabetes, etc. She died at an early age and was very miserable for the last 15 years of her life. Given, that was in the late 80s and they did not know nearly as much as they do now, for the most part, her illnesses have not advanced much from what I read by way of treatments. She trusted Mayo Clinic and went there 2-3 x a year with my father as her support system. Having a support system (which I do not now) is so helpful.
I started 10+ years ago with peripheral neuropathy symptoms in my feet. All the doctors I saw attributed it to my very flat feet and to my very low spinal disc herniation and early degenerative disc disease, pressing on nerves. A few tests were run to rule out 3-4 obvious auto-immune diseases, but none would have shown MGUS. CBCs and CMP were always pretty much normal. Ditto ANA and CRP tests were done.
It wasn't until I consulted a physiatrist about my feet symptoms and he decided to run some extensive blood tests on top of the EMG and NCS (both normal) that we saw an IgM paraprotein in my blood and he then sent me on to the large cancer center here. More tests and a BMB confirmed low-risk MGUS. I met and had a long interview via email and by phone with a MM survivor who had it pretty badly and has been in remission using supplements and a very strict diet for 25 years now. He made some suggestions, many of which I have adopted, especially the diet. He has an MM/MGUS group online also.
I also decided to contact a very well-respected MGUS/MM specialist at Mayo for a phone consult and to review all of my medical histories for the past 6-8 years. He said more is going on but is puzzling to him because all I have going on clinically is the PR and paraprotein basically. I will go for a battery of more tests next week locally. Depending on what they say, I will probably have a "fat pad biopsy" done sometime after those results come back.
So, without getting into a longer, boring story, that is my journey as it relates to MM/MGUS and related things.
Good morning @circawdm I would love to learn more about the diet and supplements recommended by Dr. Dongli at Mayo and the MM survivor you consulted with. I am still in the early stages of MGUS/SMM diagnosis. I meet with a hematologist for the first time next week. Meanwhile all I know is that my IgM paraprotein level is 0.4, and I have peripheral neuropathy. I agree wholeheartedly with your philosophy of always consulting with a specialist before undertaking any complementary medicine cures. . I would love to learn more about the diet and supplements recommended by the doctor you consulted with at Mayo and the MM survivor you consulted with. Thanks so much for sharing your experiences. I hope the testing you recently underwent yielded helpful, actionable information.
Sorry, meant to type that my IgG paraprotein level was 0.4 not IgM.
How nice to read your posts, Thank you all, I do eat a Mediterranean Diet mostly, no processed foods and ginger. Like my icecream though, so not always no sugar. I do have sleep issues but a lot of work related stress so tend to have my thought’s circling around at night. Does anyone have other symptoms too?
I am seventy and it is always baffling to me how my body has found such irritating ways of betraying me. On bad days when I have achy joints and spend nights tossing and turning to whatever 70s tune is on “replay” on the jukebox in my head, I frequently wonder if I am symptomatic from this asymptomatic condition. Then my new friend, anxiety, runs with that football until I can recover it and tuck it next to my long-term bff, Logic.
Life has so many stressors, it’s good to keep them sorted out as much as one can.
My original question which started this thread is about the benefits of diet as it relates to MGUS. Generally speaking, I believe that there are health benefits to a Mediterranean diet, but I am an empiricist and want to see data if there is any about the relationship between diet and MGUS.
I do try to avoid sugar but I am weak and the song of the sweet tooth is strong with me.
Happy Saturday my friends.
Here’s a convenient ice cream substitute: frozen banana slices!
Try slicing different thicknesses to see which you prefer.
Frozen cherries are good also, whether eaten plain from the freezer or try stirring them into plain nonfat Greek Yogurt. A special benefit of cherries is that, like blueberries and other purple foods, they are high in anthrocyanin which prevents the perception of arthritic pain.
I was just diagnosed with Waldenstrom’s and my first appointment at Mayo in Phoenix is the second week in November. I live in the Phoenix area, originally from Sioux Falls, South Dakota and went to University of Minnesota so I am more familiar with Mayo in Rochester. Should I try to get an appointment in Rochester? I have always heard the only place to go is Rochester. I would appreciate any feedback.
@jackir Welcome to Mayo Clinic Connect. While you may still be reeling from getting this new diagnosis, I would offer the following thoughts.
Recently, so many of us have had a difficult time getting appointments, no matter where we live, or the condition we are seeking treatment for. It seems to be a fact of life right now.
Keep your appointment with the team in Phoenix. Number one, there is not much travel involved [a good thing emotionally and financially]. You may indeed find a great experience right close to you! Give them the chance to take care of you. If you or they feel the need arises that Rochester is a better fit for you, you will at the least have given the Phoenix campus a fair opportunity to see you.
How does that sound?
Jackir welcome. Rochester is certainly a wonderful campus. We went there for a second opinion when my husband was fighting lung cancer. Our physician oncologist was in Rapid City (Spearfish was our home). They concurred with the excellent treatment he received at Rapid and ruled out eligibility for trials based on their own assessment of his disease.
I very much agree with Ginger. You may find that the fit is perfect with the Phoenix facility. Today consultation is easy with electronic record sharing so you can always seek a second opinion if you are unhappy with the trajectory.
I wish you good outcomes.
No I have had a fracture recently but it’s because I fell of my bike being a bit shaky and broke my shoulder.
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