[Trae]

Plasmacytoma with MGUS - what treatment?

by Trae on Sat Sep 05, 2015 2:01 pm

Hi all,

This is my first post, though I've been lurking here a while as the diagnosis started getting more concrete.

I'm still waiting for official diagnosis as not all the results are completely in, but this seems to be the likely diagnosis - though not without some doubt. As I'm still waiting for full diagnosis, I apologise if some of my numbers / terminology are a little vague. I'll do my best to clarify where I don't make much sense!

I have a large tumour in my sacrum that has been causing pain for at least 16 months and could possibly be up to three years. It is described as unaggressive ( I recall the number 5 being bandied around as a rating of the aggressiveness of the tumour - UK measurement). On MRI scan and contrast CT scan 6-8 weeks ago it was around 8 cm. On my most recent scan (PET/CT - 1 week ago) it was at 7 cm. The doctor is not prepared to believe that the tumour has shrunk, but says at least it hasn't grown. I take a more positive view simply because I prefer that interpretation.

About 4 weeks ago I had a CT biopsy and got the diagnosis of plasmacytoma. My bloods are all completely normal for liver, kidney and anaemia tests. I'm waiting on some of the protein bloods, etc., so don't have figures. I did have a urine test about 3 weeks ago that came back "Bence Jones positive" with no greater detail than that. I'm still waiting on the more in depth urine results from a test last week.

Neither the original lumbar MRI nor the contrast CT scan (thoracic and pelvic) region picked up any other lesions, but the PET/CT (full body) picked up a potential anomaly at the L2 vertebrae. It's less than 5 m​m and may well be an anomaly – nobody is sure at this point what it rep­re­sents.

Preliminary bone marrow biopsy results give a clonal plasma cell content of 0.42% although my consultant warns that this may well rise (drastically, in his words) when the full results are in. As they took the biopsy from the iliac crest and the tumour is in the sacrum, I'm not sure if that would have any implications for the results - the test site was a good 5 cm from the tumour.

At this stage, the doctor is recommending radiotherapy followed by chemo (VCD – Velcade, cyclophosphamide, and dexamethasone – current UK standard). I don't think he's considering a stem cell transplant, though he was talking about the procedure to me so I'm not 100% sure. I'm getting a second opinion on Monday morning, but I just wondered if anyone on the forum had seen anything similar and had any thoughts or advice to give.

At the moment I'm weighing up three broad options:

1. High-dose radiotherapy and then monitor
2. Radiotherapy plus VCD and
3. Asking for another MRI scan to see if the tumour is indeed shrinking; if it is, I would be tempted to wait and see how that panned out without any treatment and only go for the treatment when the tumour stopped shrinking or my urine/blood/biospsy results took a turn for the worse.

I'm very much doubting that option three would be preferred by medical professionals, but it's in the back of my mind as a possibility.

Any thoughts would be really gratefully received as I'm very new to this journey and feeling a little confused right now.

[Little Monkey]

Re: Plasmacytoma with MGUS - what treatment?

by Little Monkey on Sat Sep 05, 2015 9:34 pm

Did they mention surgery for that size of a neoplasm?

[Trae]

Re: Plasmacytoma with MGUS - what treatment?

by Trae on Sun Sep 06, 2015 2:08 am

No, nobody has talked about surgery. Possibly because of the location in the sacrum - it's pressing on the S1 & S2 nerve roots (bladder control, bowel control & sexual function). I don't actually have any of those symptoms (in fact, I don't have many symptoms at all - mild local pain is all), but I believe that surgery would be considered quite risky if radiotherapy will do the job.

[Little Monkey]

Re: Plasmacytoma with MGUS - what treatment?

by Little Monkey on Sun Sep 06, 2015 8:02 am

Is it extramedullary or is it inside the bone structure ?

What part of the UK are you in?

I would ask the specialist you are seeing on Monday if you should be starting dexa­metha­sone right away, especially if the neoplasm is pressing against any nerve root.

[Trae]

Re: Plasmacytoma with MGUS - what treatment?

by Trae on Sun Sep 06, 2015 11:19 am

Hi there,

I'm in Devon and have been seeing a specialist at the Royal Marsden in London. I have an appointment in Exeter tomorrow morning.

The specialist I saw about 10 days ago said he would start me on dex if I had any neuropathic symptoms but, as I didn't and the tumour was unaggressive, he didn't think it was necessary. I'll definitely ask the consultant I'm seeing tomorrow though, so thanks for that.

Am I right in thinking that the spread of clonal plasma cells could have come from the tumour, or could potentially be a pre-existing or co-existing MGUS? Do you have any opinion as to whether the aggressive treatment with potentially the rigours of a stem cell transplant would be worth it? I want to give myself the best chance possible of a long (and possibly even permanent) remission, but I'm keen not to start the clock ticking on developing resistance until I absolutely have too. It seems like a very difficult balance to strike!

Thanks a lot for you input with this, I really appreciate it.

[Trae]

Re: Plasmacytoma with MGUS - what treatment?

by Trae on Sun Sep 06, 2015 11:29 am

Also, I just realised I didn't answer your first question – it's in the bone. Specifically, it's in the sacrum. Doesn't seem to have done too much damage as yet, for which I am extremely thankful.

The nurse doing my bone marrow biopsy said I had extremely tough bones as she sweated and strained to get the big needle in. I guess that's really good news in almost every situation – except when you're having a bone marrow biopsy

[Multibilly]

Re: Plasmacytoma with MGUS - what treatment?

by Multibilly on Sun Sep 06, 2015 1:22 pm

Trae,

What your doc is considering seems to be in line with standard treatment protocols for a SBP. But note that you can find quite a bit of discussion on the web regarding whether adjuvant chemo should be used with radiotherapy (your option #2) or not, including the MB article below.

https://myelomabeacon.org/news/2012/05/04/solitary-bone-plasmacytoma/

http://emedicine.medscape.com/article/207233-treatment

[Cheryl G]

Re: Plasmacytoma with MGUS - what treatment?

by Cheryl G on Sun Sep 06, 2015 2:04 pm

Hi Trae,

Welcome to the forum.

Multibilly has pointed you to some good resources.

Have you had a serum protein electrophoresis (SPEP) done and/or serum free light chain assay and, if so, what were the results of those tests? The first will tell you what your M-protein (M-spike, monoclonal protein) level is, and the second will tell you what the kappa and lambda free light chain levels are in your blood.

Both tests will given some insights into what sort tumor burden you have, which could play a role in your decision. (I don't see any mention of these tests in your posting, but perhaps I missed it.)

One reason I ask is because you mention that Bence Jones protein was found in your urine. That's just another way of saying that monoclonal free light chains were found in the urine, which suggests that there are probably elevated free light chain levels in your blood. It would be helpful to know just how elevated those levels are, and if you have any M-spike, as well.

The other key issue, I think, is what exactly that anomaly is that was found on the PET/CT. If the second lesion is myeloma-related, I think that would (technically) shift your diagnosis from a solitary bone plasmacytoma to multiple myeloma. This article has more information on the cur­rent diagnostic criteria for multiple myeloma, smoldering myeloma, and solitary plasma­cy­toma:

SV Rajkumar, "New Criteria For The Diagnosis Of Multiple Myeloma And Related Disorders," The Myeloma Beacon, Oct 26, 2014.

I hope your appointment tomorrow goes well. Good luck!

[Little Monkey]

Re: Plasmacytoma with MGUS - what treatment?

by Little Monkey on Sun Sep 06, 2015 2:52 pm

Best of luck Trae,

I assume you will be receiving any radation treatment at RDEH.

[Multibilly]

Re: Plasmacytoma with MGUS - what treatment?

by Multibilly on Sun Sep 06, 2015 5:00 pm

Trae,

As usual, Cheryl makes some really excellent points. I should have made it clear that my com­ments about SBP treatment assumed that the final diagnosis was indeed a solitary plasma­cy­toma, which isn't yet confirmed.