[Trae]

Re: Plasmacytoma with MGUS - what treatment?

by Trae on Mon Sep 07, 2015 9:49 am

Hi there,

Thanks for all those comments, they've been really helpful.

@ Little Monkey - I asked the doctor about dex and he gave me a prescription for it plus stomach protectors for a four day intensive course. It would indeed be the RDEH where I would get any radiotherapy. They also have the Myeloma XI trial running so they have some different frontline treatments available, including carfilzomib (Kyprolis).

@Multibilly - I had seen the article on the Beacon, but not the other one, so tanks for pointing me in that direction.

@ Cheryl G - I will post the results as I get them. I'm expecting them any day, but they haven't come though just yet. The other blip on the PET CT is less than 5 millimetres in size and was not detected in a lumbar MRI about 7 weeks ago. The doctors are going back to the original to see if it was there all along, or if it's more likely to be some sort of anomaly. At my appoint­ment today, nobody would commit to anything concrete. We talked about multiple solitary plasma­cytomas, solitary plasmacytoma, and multiple myeloma. A few more results are needed, and my next appointment is in another 3 weeks to give them time run the new tests and collect together all the other tests I've had over the past 6-8 weeks. Seems like an eternity to me, but I guess I'll need some patience. I'm expecting to hear from the Royal Marsden Hospital this week, which should give me those results you asked about.

It's probably too early to answer the questions that are buzzing incessantly round my head, but what really confuses me is the balancing line between early intervention and developing resistance that makes later treatment less effective. From what I can see at the moment, the science doesn't seem to be conclusive.

[Tracy J]

Re: Plasmacytoma with MGUS - what treatment?

by Tracy J on Mon Sep 07, 2015 10:07 am

Trae,

I agree that it seems you are just going to need to wait for all these tests to be completed and resulted to get a more definitive answer. I don't have any other advice than that.

What I REALLY wanted to share is that the "waiting for a definitive diagnosis" part of this process is so painful. It's truly crazy-making. My heart breaks for anyone going through this. Hang in there. It does get better, and you aren't alone.

Tracy

[Trae]

Re: Plasmacytoma with MGUS - what treatment?

by Trae on Mon Sep 07, 2015 2:22 pm

Hi Tracy - You are so right about that. It all seems to be waiting and then more waiting. Every time you have more tests, you think you're going to get something definitive, and so far I've got a bit more information and even more new questions ... I'm trying to learn to be more gracious about waiting, but it doesn't work all the time.

Today has been no exception to that. I had a phone call from the doctor regarding the bone marrow sample. The "jelly" sample came back with 0.42% clonal plasma cells last week and he warned me that, when they got to the actual plug of marrow sample, it was likely to go up. But it didn't. It dropped to a nice round 0.00%. Even more confusingly, the plasmacytoma came back as lambda and the bone marrow sample came back as kappa (apologies if that's a bit vague – it's what I remember from a phone conversation; I don't have the test results in front of me and I'm not up to speed on the terminology yet). Meaning that the plasmacytoma and the MGUS are com­pletely unrelated, as far as I understand. That may well be storing up a whole heap of trouble for some future date, but right here and now it seems like good news!

The anomaly at L2 could still be related, but there's just a good a chance that it's not. He said the other most likely cause was a degenerative back condition. I've had a bad lower back since I was 18, so that's perfectly plausible. We won't know until we've watched it for a bit longer.

The good news for me is that he suggested a course of treatment that I liked: radical radio­therapy on the plasmacytoma with regular follow ups to see what else is happening. No chemo at this point in time. So, I'm going to have to keep my fingers crossed, watch, and wait. Hopefully giving me plenty of opportunities to work on my patience!

[Little Monkey]

Re: Plasmacytoma with MGUS - what treatment?

by Little Monkey on Mon Sep 07, 2015 8:32 pm

Hi Trae, your suggested treatment plan was the same as my dad's-radiation and a short course of dex.

The wait to find out if it is SBP or multiple myeloma is nerve-racking; being part of the treating medical team must be rough, your patient wants a definitive diagonosis, but you want to make sure it is the right one as a true SBP is treated differently than multiple myeloma.

I am glad you received a dex RX.