Multiple Myeloma: Come introduce yourself and let's talk

Recent blood work showed slightly elevated ionized calcium levels. Regular calcium levels are at the high end of normal. My blood count levels are normal, including creatinine, albumin. For almost a year I've had insomnia, low energy, muscle aches, generally feeling unwell. I know high calcium levels can be an indicator of multiple myeloma, and it's a concern for me because my father and his mother both had MM. Just wondering if anyone had early symptoms similar to mine before being diagnosed with MM? I have a Dr appt today but my Dr seems unsure about my blood work since, other than slightly high calcium levels, my other blood work is in the normal range.

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Thank you so much for sharing! My dental issues are the reason I still refuse bone strengtheners. I have had no fractures, so far, and take Caltrate now. Of course, lytic lesions are amyloid, I guess. But I always felt like the deep dental cleaning spurred a systemic inflammatory response. And you are right. Since diagnosis, my doctors don't seem interested in checking out any other problems. They make me feel like a lost cause, because I have an incurable cancer. It is frustrating.

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@lisal64 .. Actually, yours seems to be a rather typical story. The part many folks don't realize is that MM is a branch of the cancer group, so anything under that in the string must be seen as cancer of a particular type. I have MM>Amyloidosis>Gelsolin>and others will eventually be added to the string. The Dental work gives a clue to Gelsolin (Finnish Amyloidosis), and some other stuff. Gelsolin (GSN) attacks the ACTIN web which holds together every cell of the living organism. That means you. I have about 300 other hits in my genome that I know of that are dangerous in some way. Just do not allow yourself to become comfortable with a diagnosis which leaves no room for additional issues. I would suggest you make yourself comfortable with http://www.OMIM.org, http://www.HPO.org, and other National Institutes of Health internet sites. They have a world of technical and non-technical stuff. A good genetics counselor is worth their cost. oldkarl

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Hi Angie, I'd like to add my welcome. Are you currently on chemo for multiple myeloma? How does this affect your kidney care?

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Hi Ginger, I had a total knee done in 2016 and in 2019 it got infected and they had to take out everything and had no knee for 6 months. Infection was gone and then they put the knee back in and I then had to see my Kidney Dr. and that's when he did tests and from there a BMB and WaLa Multiple Myeloma. My kidneys are bad from diabetes and stay the same GFR around 30. So on Valentines Day I will have MM for 2 years. I did have slight numb feet from diabetes but it has gotten much worse. I'm only on Revlimid now for about 9 months 5mg. Those numbers kappa Light Chain are kind of staying good. I was on the antibiotic SMZ but my Kidney Dr. wanted me off. I just seen my Oncologist today and she is going to talk to him and let me know.
As far as the neuropathy iI have it in both feet so it does not matter which foot goes in front of the other. I hope you are doing well, you sound just like me. Hope to stay in touch!! have Great Holidays!!

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@ancopau1998 Let me welcome you to Mayo Clinic Connect! I see you have posted in a couple of different conversations here today, good for you for jumping right in!

Like you, I am a multiple myeloma patient, taking Revlimid 21 days on, 7 days off. Along with a weekly dose of Dexamethasone and SMZ TMP for antibiotics. Since I also deal with a rare kidney disease [not related to the myeloma] my oncologist decided we would go very slow in treatment in order to not stress the kidneys any more than necessary. What dose do you take for the Revlimid, if I may ask?

Neuropathy is the pits, isn't it? I have it in my left foot, mostly just numb, same as you! It's hard to remember to step out with my right foot, since it is way too easy to lose my balance with a numb foot! Do you have that problem, too?

How long have you been in treatment? How were you diagnosed?
Ginger

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Prior to diagnosis, I became increasingly fatigued for the last 12-15 months. I had also been sick more and more, for the year prior. I thought it was my age, (54), and working night shift for 9 years at a stressful job, with 12 hour shifts. In January, 2019, I had an upper respiratory infection and sinusitis. I developed left posterior rib pain, which I contributed to coughing. I seemed to never get over my illness. One seemed to bleed into the next one. One co-worker had even commented "Lisa, you are always sick". I had laughed, and told her I was just getting old.
In February, and March, 2019, I began some long overdue dental work. This included some deep cleaning-descaling of upper and lower teeth. The day after I had had this done on upper teeth, I had a rapid onset, severe head cold. This quickly developed into new onset asthma as well. Later that week, I finally went to my PCP. They ordered a chest x-ray, but no Labs, as I did not have any fever. The chest x-ray was abnormal, and suggested a chest CT. I was treated aggressively for the asthma and respiratory infection. 12 days later I had a chest CT. My lungs had cleared up from treatment, but they saw multiple lytic lesions on my thoracic and lumbar spine, suggestive of MM.
Thus, I had multiple lab work done, and was referred to a hematologist. I got my official MM diagnosis on June 20, 2019. My PCP was confounded, because my initial labs did not look that bad. My BMB, in June showed 40% MM. Skeletal study and PET, showed multiple, active lytic lesions throughout my skeleton, including my skull, spine, pelvis, hip, upper legs, and upper arms. My Transplant Hemotologist, at Mayo, agreed that I had had MM for a while, due to my heavy bone involvement. MM is not a cancer that is routinely screened for. 28 years ago, as a nursing student, my Med Surge text book had one big paragraph in it, about MM. Fatigue, in reased illnesses, and occasional sporatic pain in back, hip, ankle, were the only symptoms I had. I am a nurse, so I really though it was age, being post menopausal, working night shift, and just part of getting older.

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