[DaveB]

New bone lesions, no change in blood work - relapse?

by DaveB on Mon Jun 02, 2014 9:30 pm

I was diagnosed with multiple myeloma back in early 2010. Went into a clinical trial then comparing Velcade-Revlimid-dex (VRd) vs Revlimid-dex. I was in the VRd arm. Had a CR mid year and went on a 10 mg Revlimid-dex maintenance program where I have been ever since.

All blood work indicates still all clear. No m spike, free light chains good, proteins good, and last bone marrow 9/13 was no plasma cells. All consistent with previous results.

However, 3 months ago a bone survey showed a new lesion. Another bone survey last week again showed new lesion. No change in the blood work. Got knocked out of the clinical trial.

1. How can I get lesions with no blood indication of multiple myeloma?
2. Had a Zometa and more scheduled. But how can I deal with changing treatment - more Revlimid, add dex, go to something else without something to measure effectiveness except for bone survey?

[TerryH]

Re: New bone lesions, no change in blood work - relapse?

by TerryH on Mon Jun 02, 2014 11:05 pm

Sorry to hear about your lesions, Dave.

I thought there was a discussion about this topic recently, but I can't seem to find it. Maybe others will remember it and post how to find it.

I did find, however, this forum discussion from a while back,

https://myelomabeacon.org/forum/relapse-with-low-m-spike-t430.html

that includes a posting from Dr. David Siegel from the John Theurer Center. It's a great posting that explains several reasons why what you're experiencing can happen. I think you'll find it helpful.

Best of luck to you.

[DaveB]

Re: New bone lesions, no change in blood work - relapse?

by DaveB on Tue Jun 03, 2014 11:29 am

Thanks for your info .. My further question is - If I start treatment i.e. increase Revlimid, add dex, or switch to something else, how do I measure results, as only bone survey shows anything so far?

[barbsarb1]

Re: New bone lesions, no change in blood work - relapse?

by barbsarb1 on Tue Jun 03, 2014 5:50 pm

I am in the same boat. Blood work shows little or no change and I have two broken bones with just normal household activity. PET scan yesterday shows lots of hot spots of active disease. My docs want to start me right away on Kyprolis (carfilzomib). I have been in remission for 4 1/2 years.

[Nan C]

Re: New bone lesions, no change in blood work - relapse?

by Nan C on Tue Jun 03, 2014 7:52 pm

I also had no change in blood work, had a bone survey in April of 2013 (after being in remission for almost 3 yrs on Revlimid maintenance). Suffered for 5 months for what was thought to be a herniated disc, MRI of spine showed no myeloma. Only to find I had a huge lesion on the ball of my hip.

By then my proteins were up. I needed a total hip replacement and have been on carfilzomib [Kyprolis], Cytoxan and dex. Had a complete response and now still on carfilzomib and dex every other week as maintenance.

[Dr. Jason Valent]

Re: New bone lesions, no change in blood work - relapse?

by Dr. Jason Valent on Wed Jun 04, 2014 1:23 pm

My personal preference for someone in your situation is to go back to full dose (25 mg) on Revlimid (as long as your blood counts allow) and restart dexamethasone. If this doesn't work (in your case, development of additional bone lesions), then move to a Velcade based regimen.

The previous post does nicely summarize the reasons for new bone lesions despite lack of a blood marker. Your bone imaging will need to be monitored very closely.

[DaveB]

Re: New bone lesions, no change in blood work - relapse?

by DaveB on Thu Jun 05, 2014 11:51 am

Thanks Doc.

[ivanm]

Re: New bone lesions, no change in blood work - relapse?

by ivanm on Thu Jun 05, 2014 4:21 pm

I experienced this oligosecretory / nonsecretory condition post auto transplant. For me personally, the issue was resolved by targeted radiation and 15mg Revlimid. Close to two years now. God only knows for how long ... Good luck.

[Wayne K]

Re: New bone lesions, no change in blood work - relapse?

by Wayne K on Thu Jun 05, 2014 5:07 pm

In my case I was showing signs of coming out of remission, faint M spike, and broke my collar bone with very little pressure.