[Vijayabharathi C]

Lytic lesion with no other sign of disease - possible?

by Vijayabharathi C on Sat Mar 29, 2014 4:50 am

Hi

My mother had been suffering myeloma from May 2011. In Nov 2011, after initial therapy, her M-spike dropped to zero.

Though not able to collect enough stem cells, she continued on conventional therapy. M-protein level spiked in Aug 2012 with 1.3, again it was brought back to zero with Velcade+dex treatment.

With Revlimid 10mg maintenance, she continued with no issue until last month. Week back, we found some lump in neck. Doctors identified it later as a lytic lesion. We had every test done, including SPEP, BMB, BMA. Everything is normal.

Doctors suggested us full x rays of body to check if there are anymore lesions anywhere.

Currently I am confused with the nature of the problem. How can there be lytic lesions if all the other tests are coming back negative for myeloma? Has anybody else experienced this kind situation?

Regards
Vijay

[Multibilly]

Re: Lytic lesion with no other sign of disease - possible?

by Multibilly on Sat Mar 29, 2014 8:47 am

Unfortunately, my understanding from earlier readings is that one can have "serological remission" and still have new lesions pop up (which is why it is important to continue to get imaged even when your are in remission).

I don't pretend to understand how this occurs, other than I might guess that there are still small clonal lines of cells that may not show up in your blood work and BMB, but which are there nonetheless...and these can foster the development of lytic lesions. Or perhaps the precursors to these lytic lesions were there for some time and survived the treatment and are now manifesting themselves (these are purely non-medical guesses by a layman, so please verify all this with a doctor).

If I were in your situation, I would suggest a PET/CT instead of an xray survey given that you have determined there is a lytic lesion present. It could also be that the earlier xrays missed the lytic lesion in the neck when it was at an earlier stage and it has been there for some time?

See these posts on imaging.

https://myelomabeacon.org/forum/topic3068.html

https://myelomabeacon.org/forum/type-imaging-smoldering-myeloma-t3023.html

[Wayne K]

Re: Lytic lesion with no other sign of disease - possible?

by Wayne K on Sat Mar 29, 2014 11:23 am

It appears that someone coming out of remission doesn't necessarily show the same signs they did originally.

In my case, for instance, I was being monitored every 6 months by a hematologist for CLL. When I was diagnosed with multiple myeloma, I had multiple serious signs of the disease that had appeared within the 6 month period. I have no idea which started to emerge first.

Now I am slowly coming out of remission, but because of the intense testing every 90 days, I only have a couple of indications.

I suspect your mother is showing a first sign and, if left alone, more would follow. While the CRAB requires 2 of the 4 to indicate multiple myeloma, this is for people who have never been diagnosed in the past, I assume.

[cyom22]

Re: Lytic lesion with no other sign of disease - possible?

by cyom22 on Mon Mar 31, 2014 11:11 am

I am sorry for her situation. I thought I was in remission because my blood work was all normal, but instead it turned out that my myeloma changed and I became a non secretor. I only knew I was out of remission by all the new lesions. Pomalyst and dexamethasone are working so far.

Best wishes, Carol

[Vijayabharathi C]

Re: Lytic lesion with no other sign of disease - possible?

by Vijayabharathi C on Tue Apr 08, 2014 7:31 am

Hi Multibilly / Wayne / Carol

Thanks for the wishes

The X-ray results came last week.. She has some small lytic lesion in back side of skull.. Other than that she dont have any abnormalities in X-ray results.. No idea on previous lesions, which might have been healed in Xometa injections?

Small lytic lesion present in back side of skull didn't present any symptoms up to now. Radiation treatment just finished for the lesion in neck. We are waiting for doctor advice next week for any change in the treatment.

Thanks and regards,
Vijayabharathi C