I was diagnosed with MGUS about a year ago. They have been screening with labs. I’ve noticed some MGusers have bone marrow tests and some don’t. Is there a criteria we should know about?
😊 Thank you
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I was diagnosed with MGUS 2012 and only use haematologists for blood tests, MR scans and for bone marrow test when I want to know if I have progressed to myeloma. I use homeopathy, Chinese herbs and a lot of supplements and am not vaccinated against co-vid, because I think the side effects from the vaccine will be too much for my immune system. I also have polyneuropathy and heart fibrillation. I am on a healthy diet and start my day with a walk for 1/2 an hour. So far I feel, that the polyneuropathy is the number one problem I have, and so far the most difficult to handle. My blood tests goes up and down and according to my haematologist I have still not progressed to myeloma. But of course it is up to everyone to follow their convictions in the treatment and try to listen to what would be best for one self.
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@lasfarolas Welcome to Mayo Clinic Connect. Your experience with MGUS seems to follow what many people also go through, that is, not progressing to the next stage. And, once again, you are proving that each person is different, and how our body handles this disease.
Having multiple health concerns, along with MGUS, is something I always find fascinating. As mentioned before, the body is a wonderfully miraculous machine that works with different conditions together. How each seem to interplay to allow us to keep going each day is a wonder!
What types of homeopathy products do you use? Do you integrate any Western medicine into your routine?
I have just been diagnosed with MGUS and have been reading up on it before my first hem visit next week. There is a new study out of Dana Farber showing very high correlation between MGUS and coronary events like MI or stroke. Has anyone had these results discussed with them or their treatment changed in any way? The doctor at DF is well-respected Dr Ghobrial. Thank you for sharing your information with this group.
I haven’t been able to find this article by Dr. Ghobrial On the correlation between MGUS and coronary event. Could you please post a link to it.
Hi Ginger, I am a 80 year old Danish MD who has practiced Holistic Integrated Medicine since the 60ties. Trained in acupuncture and in Chinese herbs, diet, homeopathy, kinesiology and osteopathy.
I work together with my wife and use homeopathy, which is tested for relevance with the help of kinesiology, because it shift frequently. I use a blood thinner and Digoxin for my atrial fibrillation.
Thanks for asking,
Thank you for sharing. I can only imagine the fear of the unknown. I was diagnosed in May of 2020 with MGUS with Lambda subtype. Since then, I see oncologists every (3) months. I had one BMB because there is evidence of progression, but slow. And I will have another one in a few months because they want to see if the percentage has reached 10% or more. First BMB revealed it was approaching 10%. However, during my review of the BMB I noted the report also stated my bone marrow to be moderately hypocellular with 20% cellularity. I am 57yrs, so that is a problem. No one picked that up and once brought to their attention, now everyone wants is rushing to get another BMB. It is true having MGUS does not automatically mean you will progress to MM. I found doing your research has proved helpful as it allows me to be a strong advocate for my own health. It also helps me to have a better understanding of what's going on in my own body and ask relevant questions to my oncologists, which minimizes any fear or anxiety. I ask both oncologists lots of questions- I keep them on their toes:)
@lasfarolas I am looking forward to your contributions in our discussions, giving us examples of how we as patients can integrate different modalities onto our healthcare. It sounds to me that you have used your own case as a testing/proving ground!
@teedlum Some people with MGUS do indeed have a bone marrow biopsy, but not everyone. Much of it depends on what labs tests are showing to your doctor as they continue to monitor you.
As you may already know, MGUS can go a long time with no noticeable symptoms. Many people never develop any other stages of disease. Others advance to smoldering myeloma. But that can be decades in doing so. Your medical team wants to keep an eye on you, and unless your lab results indicate there may be an issue, a bone marrow biopsy may not be done.
If you have other health concerns going on, your team will look at things from an overall perspective. Here is an article from Mayo Clinic about MGUS that may help you understand things a bit more clearly: https://www.mayoclinic.org/diseases-conditions/mgus/diagnosis-treatment/drc-20352367#:~:text=Bone%20marrow%20test.&text=Bone%20marrow%20analysis%20is%20generally,lesions%20or%20high%20calcium%20levels.
Do you have any other questions I can answer for you?
EVUSHELD QUESTION WHETHER TO KEEP GETTING INJECTIONS: Not certain where I should jump in to the MGUS discussion.
I have IgM kappa MGUS and have had all five Modernas, the primary plus three boosters. (Absolutely no side effects from them.) However my body was tested for covid immunity and found to be immune compromised. Therefore I was given EVUSHELD six months ago and now due to repeat.
However, though my PCP advises getting second Evusheld, the covid virus variants have moved on. My hematologist, who had first said I was lucky to get E, now advises not to bother getting it. My friend with CLL is advised by a different hematologist not to get it also, and to wait and see what the FDA advises regarding Evusheld in a month or two.
My question to the MGUS and blood cancers family of unmet friends is: what are you hearing regarding continuing Evusheld?
Thanks for letting us know!
@raye There is an active discussion in the Transplants group, about Evusheld, that you will no doubt find informational.
I have had two doses of Pfizer, 2 boosters of Pfizer, 1 bivalent, plus 2 doses of Evusheld. My next dose of Evusheld is due in February 2023. Personally, i am of the following mindset: Evusheld may not protect me against the latest variants, but it won't do me any harm. I am immune-compromised, and any help is better than none. I am sure I do not have much antibody amount even with all my vaccines/boosters. It certainly is not that I like to collect vaccines, but I want to give myself all chances possible to stay healthy. And to that end, it includes frequent hand-washing, masking as needed, and social distancing. simlly, I cannot afford to get sick with anything!
My oncologist for multiple myeloma just last week told me we would revisit Evusheld issue come Feb when I am due again, to see what the FDA says then.
I’ve had MGUS since 2010, like most no one could really tell me much about it until I saw a specialist. I’ve had the full body scan (21-27 x-rays), and my blood is checked every six months to every year, currently every six months. My M-spike has been stable at 0.4d/gl.
I had the bone marrow aspiration test done about a year ago. All in all, it wasn’t that bad but I did elect to have it done in the surgery clinic under mild sedation instead of at my doctor’s office with some numbing spray. The Pathology report is about 10-12 pages long with multiple tests being performed by various labs. If you haven’t been told they are looking to see if you have the genes for any of the possible cancers that are derived from MGUS. In my case it was nice to see all of the reports coming back negative or as they like to say, “No significant”. I put off having it done for a year to two but finally decided to give it a shot. I’m glad I did. It does help in the anxiety of having your blood drawn every six months wonder if this is the time they will tell me my numbers are elevated. Good luck, and stay positive!!
Physical exam, full MGUS blood, and urine workup, and only a BMB if things have gotten high enough to worry the doctor of much progression or of another problem. Every 4-6 months. Sooner if I have any CRAB symptoms or severe fatigue, breathlessness bone pain, urinary problems, or kidney/flank pain.
What are CRAB symptoms plz?
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