[Kebo]

What do I call my multiple myeloma now?

by Kebo on Mon Feb 20, 2017 8:39 am

I completed Revlimid, Velcade, and dexamethasone 2 months ago and was successful in bringing all my numbers back to a normal level, including no M-spike.

How do I now categorize my myeloma stage, if any? MGUS? Smoldering? Active in remission?

[Ron Harvot]

Re: What do I call my multiple myeloma now?

by Ron Harvot on Mon Feb 20, 2017 10:26 am

The category of your multiple myeloma is declared at the time of diagnosis. What you describe sounds like you experienced a "complete response" (CR) or maybe even a "stringent complete response" (sCR) depending upon you serum free light chain results. You can do a search on those terms in the Beacon Forums for more information, and may also want to search the term "minimal residual disease" (MRD). An MRD negative measurement is an especially deep response. Suffice it to say that you are in remission or in a remissive state.

That is great news.

[Kebo]

Re: What do I call my multiple myeloma now?

by Kebo on Tue Feb 21, 2017 12:18 pm

Thanks Ron,

I see a multiple myeloma specialist in March and will discuss further with him. Thanks for the reply.

[f cancer]

Re: What do I call my multiple myeloma now?

by f cancer on Thu Mar 02, 2017 10:42 am

Congrats! I was wondering the same thing. Today I hit a zero M-spike for the first time. Been on Revlimid 15 mg and dexamethasone 20 mg for last 5 months after being on Revlimid, Velcade, and dexamethasone for 8 months. I haven't talked to my doctor yet, but all my labs are in the normal range. I guess this is a remission?

Question is, do I celebrate, or since we know it will come back, do we just move forward with a little jump in my step now? I mean we really don't know how long this will last ...

[faithoverfear]

Re: What do I call my multiple myeloma now?

by faithoverfear on Thu Mar 02, 2017 4:30 pm

Same here. I'm one year post autologous stem cell transplant (ASCT), and I've been on Revlimid for six months. No M-spike.

The emotional thing is hard. This may sound trite, but you can't let worry about tomorrow rob you of today. I get really down when I think about the long-term situation. So, I try not to do that much.
Can we do anything to control the future outcome? Very little at this point. Enjoy what you have.

For me, the best feeling is doing stuff with friends or helping people I love.

It's important to feel useful.

Best of the best to you.

[dianaiad]

Re: What do I call my multiple myeloma now?

by dianaiad on Tue Mar 07, 2017 1:03 am

A little celebration is in order. A permanent spring in your step is also good.

And me?

I'm officially four years past diagnosis, three years since my autologous transplant, and though my numbers are just now starting to creep in the wrong direction, they are still well within 'normal' range.

And I had the dreaded p17 deletion.

You just can't worry about tomorrow that much; we are all very different in our journeys here. Personally, the only problem I have with the 'spring in my step' walk is that my knees will protest. I'll take a sedate glide, thank you, and a huge grin, instead.