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Understanding MGUS and Early Myeloma: News and Notes

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This week there are several interesting items in the news that help us understand how and why monoclonal gammopathy of undetermined significance (MGUS) occurs, and when it may or may not turn into active myeloma.

Matthew Drake and the Mayo Clinic bone research team worked with a group from Sheffield University in the UK to illustrate that the bones in MGUS patients are not normal. MGUS patients have weakened bones versus age and sex matched controls. There is increased porosity ("more holes") in surface bone and reduced bone strength. This is important and at the same time quite puzzling. It is important since we now need to be looking more closely at this to assess if bone treatments, such as we use in active myeloma, need to be considered also for MGUS patients. But the puzzling part is that we associated bone problems with the "B" in "CRAB," features characteristic of active myeloma. 

So we need a new level of scrutiny about the type and severity of bone damage that indicates transition to active myeloma. These indicators are: a positive PET/CT scan; definite lesions on a whole-body low-dose CT scan, and or/multiple lesions on an MRI scan. Just reduced bone density is not specific enough or sufficient. This is certainly not the end of the story in terms of understanding what is happening in MGUS versus the major change that occurs with serious bone destruction in active myeloma.

Another interesting story that caught my attention is the report of the full genetic sequencing of sharks that have cartilage, but no true bone like humans. It turns out that sharks are completely missing all the genes needed to make bone. It also turns out that they are also missing genes linked to the immune and blood system which are part of the same complex. What you may not know is that sharks rarely develop "bone" cancer (such as myeloma). It was thought that this was because cartilage blocks cancer formation. 

I carried out research years ago which revealed that there is some evidence for this idea. If you add cartilage components to myeloma cultures, growth of the myeloma is slowed - a little, but not a lot. Despite this there was a phase of great enthusiasm about "shark cartilage" treatments. And some short-term benefits were seen. But now it is clear that sharks lack hard bones and also lack the cells that can link in with myeloma cells to increase myeloma cell growth. Having hard strong bones is excellent. But these bone cells, if triggered the wrong way, can lead to bone destruction, immune defects, and ultimately myeloma in some cases.

Our old ideas have been turned upside down! It is not the presence of cartilage which makes the difference, it is the absence of bone cells.

Triggering the activity of the myeloma cells is the key aspect of myeloma and true bone destruction. A study from the Swedish team shows that increased Freelite levels are still a reliable indicator of disease progression to active myeloma. Yet another study looking at the overall cell genetics shows that many genes are involved in the activation of MGUS and the predisposition to MGUS in the first place.

So, lots of things in the news. Always many new things to learn. Every new detail allows us to understand better and guide patients with critical decisions for recommended diagnostic testing and treatment choices. 

Dr. Durie sincerely appreciates and reads all comments left here. However, he cannot answer specific medical questions and encourages readers to contact the trained IMF Hotline staff instead. Specific medical questions posted here will be forwarded to the IMF Hotline. Questions sent to the Hotline are answered with input from Dr. Durie and/or other scientific advisors and IMWG members as appropriate, but will not be posted here. To contact the IMF Hotline, call 800-452-CURE, toll-free in the US and Canada, or send an email to hotline@myeloma.org. Hotline hours are 9 am to 4 pm PST. Thank you.

9 Comments

Thank you for this information, since I was diagnosed a year ago with "smoldering multiple myeloma at age 83 yrs of age, I have wondered if there is any link to this diagnosis and the diagnosis of severe osteoporosis, I was diagnosed at 65 years of age and have been on continuous treatment of different brands of bisphonates?
I appreciate the learning opportunities from the web site Thank you Margaret Dennis

It might also be interesting to follow those with increased porosity in surface bone and reduced bone strength with no MGUS to see if MGUS develops in these folks more often than in those with normal bone density. Perhaps "putting the cart before the horse", but I've often wondered whether people with osteopenia/osteoporosis are inviting a nice "snack" that healthy solid bone tissue doesn't easily permit, even before abnormal cells are present...

I have M-Gus for many Years and wonder if a PET/Cat Scan Is advised of full Body? I do take Calcium/VitaminD and Magnesium Supplements...Was never told to do anything other than yearly Blood Tests Thank you LInda Lieberman

I had been diagnosed with several compression fractures of my back when I fell about two years ago. Never fell or had been sick. Very athletic. Ortho dr said it will heal although he mentioned I had osteoporosis. I am a healthy 68 year male. Well, 6 months later and no healing or diagnosis, I was admitted to hospital. And got hooked up with an oncologist who put two and two together and came up with Stage 3 Multiple Myeloma!! To our family shock, we did not know where or how this happened. Shortly after that, my sternum fractured and collapsed with much pain! After 8 months of chemo, we finally were ready for bone marrow transplant last March. All went well there and put my myeloma into very good partial remission (inactive) and was put on a follow up clinical study at Moffitt Cancer center of Velcade shots 4 weeks on 4 weeks off for one year, almost coming to an end in April 2014. Meanwhile, my lesions/bones have never really healed to the point of no pain. Still have much pain and on pain medication. Too late for cyphoplasty surgery because of late diagnosis. Getting Zomata IV once a month to strengthen bones. So if you could find some way to lessen bone pain in myeloma patients other than strong pain meds, this would help a lot of myeloma patients with bone pain. Appreciate your blog and am in a myeloma support group.

I find that very interesting as I probably had MGUS for several years before the progression to what was ultimately initially diagnosed as a single solitary plasmacytoma. However, the destruction was significant. T3 was toast, T4 was affected as well as the 3rd and 4th left rib. I guess the initial weakness made it more likely to have so much bone destroyed once the disease geared up. There was never anything alarming in my blood work to indicate disease....just that bone density indicated osteopenia. Wow....wish I'd known that years before. I have been living with myeloma for 7 years now. Hopefully, you will come up with a cure soon! I appreciate all the work you do.

Do the same density, porosity, and strength characteristics and trends prevail after identification/ classification (e.g. CRAB) of multiple myeloma?

Any studies available?
Thanks much!
John

Hello Dr. Durie,
I found out first hand that patients with MGUS can have bone abnormalities. When I was diagnosed with Myeloma in Feb. 2011, it was approx. 6-7 months after being diagnosed with MGUS.( I was 52 yrs. old) My blood work did not show full blown Myeloma as of yet. So, we were at a watch and wait period, with no major concerns about progression at that time. In Dec. of 2010, I was doing heavy work at my job after the big post- Christmas snowstom, when suddenly, my neck cracked at c-4. I did not know that that was what actually happened, so I continued to work for the next 10 days, until I literally could no longer move. An MRI revealed abnormalities inside my cedrvical spine, and a PET SCAN revealed several lessions. Sure enough, there was a plasmacytoma, which I had removed during surgery, in addition to having titanium rods placed in my neck. So yes, it is possible to have bone abnormalities with MGUS, AND IT IS POSSIBLE THAT SOMETHING MAY BE GOING ON WITHOUT SHOWING UP RIGHT AWAY IN THE BLOODWORK. Thank you for your column, Gary Soccorso

I was diagnosed in 1996 at the age of 36 with MGUS. At this point I am still considered smoldering or a stage 1. I had 10 years of Aredia so my bones seem to be very strong, however, I was recently diagnosed with HLA-B27 and do have some form of arthritis. I also do have osteopenia which I think many women my age have. My only concern and I do see my doctor every 6 months and still have avoided any treatment is that my freelite ratio is high ....30.82 mg/dl . It has been as high as 44.50 mg/dl. I feel good so have chosen and have really been advised by my doctor to not start any treatment. I hope I am doing the right thing.My IGG level fluctuates between 3900-4200. I would be curious as to what other people think of my situation. I have been extremely lucky all these years. Debbie

MY MOTHER HAD MULTIPLE MYLOMEIA SADLY SHE PASSED AWAY LAST DECEMBER.I WANT TO START A FOUNDATION IN MEMORY OF MY MOTHER CAN YOU HELP ME OR LEAD ME IN THE RIGHT DIRECTION I KNOW THERE ARE PATIENTS THAT HAVE THIS DISEASE AND WE NEED TO FIND A CURE FOR THEM OR A MEDICATION THAT WILL HELP THEM NOT TO SUFFER SO BAD MY MOTHER SUFFERED SO BAD SHE GOT TO THE POINT WHERE SHE COULD NOT WALK AND EVEN HAD A BROKEN FEMUR. PLEASE GIVE ME SOME INPUT ON THIS DISEASE.

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