[Mattias]

Re: What should I do about maintenance therapy?

by Mattias on Mon Jun 16, 2014 3:28 am

Hello Hope22!

Yes I responded very quickly. My multiple myeloma is a bit different in how it usually affects people. It all started in 2009 with a pathological fracture of my left femur. It was a solitary plasmacytoma! I hade no m-spike and the bone marrow biopsy was clean, thus no multiple myeloma. In May / June 2011 I had another solitary plasmacytoma in my L1 vertebra. Again the bone marrow biopsy was clean, thus no multiple myeloma.

I was treated locally with surgery and radiation both in 2009 and 2011. The solitary plasmacytoma in my back appeared with a low m-spike around 8g/l [0.8 g/dL]. After treatment with radiation and surgery the m-spike disappeared.

In 2012 my m-spike started to rise again but I had no bone pain which I previously had experienced prior to my pathological fracture and back surgery. I was put on wait and see mode, monitoring my blood and urine every third month. I had a full body MRI and It showed four suspicious extramedullary plasmacytomas. Biopsies proved the tentative diagnosis right and this was in November 2013. I was now put on VCD and my m-spike was around 27g/l [2.7 g/dL].

This time I had a somewhat strange result regarding the bone marrow biopsy. Morphologically all plasma cells looked healthy. A small amount of the plasma cells were found to be monoclonal and expressed CD-138 on the cell surface. Thus diagnosis multiple myeloma. No high risk factors were found regarding the cytogenetics. Even the biopsies of the extramedullary plasmacytomas showed no signs of high risk cytogenetics which I believe is a bit strange.

So ... how do you classify my type of multiple myeloma? Apparently I´m low risk regarding age and cytogenetics. On the other hand, I have had several extramedullary plasmacytomas and that is considered higher risk. The VCD regimen and auot SCT have worked out extremely well. In combination with the absence of high risk cytogentics that is a good sign. I just have to wait and see...

In a couple of hours I´m scheduled for CT and skeletal survey. It´s a good thing that I work at the hospital were I get my treatment. On Wednesday I have an appointment with my hematologist. Then I will know in detail how everything turned out (100 days have past since auto SCT). Latest bone marrow results etc.

I will keep you updated. Best regards Mattias

[Allison]

Re: What should I do about maintenance therapy?

by Allison on Tue Jun 17, 2014 11:59 pm

I had a tandem auto transplant in 2008. I have not been on maintenance. That was typical back then in my area (Chicago, IL.) So much has changed in 6 years! Best wishes on your treatment.

[stann]

Re: What should I do about maintenance therapy?

by stann on Wed Jun 18, 2014 10:33 am

I went through 2 stem cell transplants in 2011. Idea being at the time that I'd start low dose Revlimid afterwards and stay on it "forever", or until it stopped working.

2 years after being on it with little to no side effects, the doctor advised that I stop. The research had changed in those 2 years and he felt there was only risk to gain after 2 years maintenance, and no benefit.

But he thought the 2 years were a good idea, but I'll never know if the Rev did anything in my case or not. But for peace of mind, I'm glad I did it. After SCT's I ended up at 0.2 m-spike and have stayed there ever since. And it's been 8 months since stopping maintenance.

If I were to do it again....I'd do it exactly the same. If I had any side effects that couldn't be solved by reducing rate, I'd probably stop.

Good luck to you.

[Mattias]

Re: What should I do about maintenance therapy?

by Mattias on Thu Jun 19, 2014 1:00 am

Hello

Stann, thanks for your input. Yesterday I found out that I'm in stringent complete response! I could not receive any better news.

My primary hem/onc is on vacation so when I brought to question the fact that I'm opting for Velcade based continuous maintenance therapy the doctor seemed somewhat startled. He promised though to consult the other hematologists before we together decide what's best for me.

I'm currently hospitalised due to a high fever that caught me the day before yesterday. I've received iv antibiotics and today I expect to be released because my temperature is back to normal. With the good news I received I don't mind being monitored for safety reasons, it could have been worse

[Beacon Staff]

Re: What should I do about maintenance therapy?

by Beacon Staff on Thu Jun 19, 2014 10:28 am

Thanks for the update, Mattias, on what you found out from your doctor. It's always helpful when people here in the forum provide follow-up information in regard to questions that they've asked.