[Brian Burson]

How long until I'll need to start treatment?

by Brian Burson on Sat Jul 23, 2016 12:45 pm

I was diagnosed with smoldering myeloma about 6 months ago. My most recent blood test indicated a serum kappa free light chain level of 335.4 mg/L where the normal range is 3.3-19.4. My kappa-lambda free light chain ratio is 27.49, where normal is 0.24-1.65.

My most recent bone marrow biopsy showed that my bone marrow plasma cell percentage is 15%. No indication of impact on organs or bones yet from PET scan, bone scans, EKG. Still awaiting to complete echo-cardiogram and sonogram of liver.

I'm wondering if others have had kappa free light chain levels such as mine while smoldering and, if so, how long it was until you had to start treatment for your myeloma.

I am still in a "wait and see" mode. I have spoken with 3 separate hematologists / oncologists and gotten their professional opinions, but wanted to get perspectives from other patients dealing with multiple myeloma.

I currently am dealing with some peripheral neuropathy, that I'm not sure is related.

Thanks for any feedback / info you can give me!

[Multibilly]

Re: How long until I'll need to start treatment?

by Multibilly on Sat Jul 23, 2016 4:16 pm

Hi Brian,

Welcome to the forum.

First off, IMHO it's more about trends and not one's lab data at a single point in time when weighing one's personal risk-of-progression.

You might want to read through this thread to better understand the whole topic:

https://myelomabeacon.org/forum/risk-of-progression-smoldering-myeloma-t4027.html

Note that since the time that the above thread was posted, cytogenetics have also started to be factored into SMM risk-of-progression. You can get an idea of what the Mayo is now saying in regards to that topic in this thread:

https://myelomabeacon.org/forum/article-about-cytogenetics-chromosomal-abnormalities-t6271.html

In my case, I've been smoldering for 3 3/4 years. My FLC ratio has been higher than yours, but then it retreated. Even though I an technically classified as having "high risk" smoldering multiple myeloma, both my local onc and my multiple myeloma specialist think that I certainly have a shot at never progressing. But then again, I could also be looking at starting treatment in a year or two. You just never know and one simply cannot predict one's own personal risk of progression unless it's obvious from the trends in one's lab numbers over quite a few months that one is in fact progressing.

You might want to also look at my own lab history to get an idea of just how much one's numbers can bounce around over time.

https://myelomabeacon.org/forum/fenofibrate-tricor-and-multiple-myeloma-t2690-50.html#p41916

[lems]

Re: How long until I'll need to start treatment?

by lems on Sun Jul 24, 2016 7:20 am

I started my 2nd cycle of Revlimid, dexamethasone. and this cycle Ninlaro (ixazomib) was added. I also have a Zometa infusion once a month.

We have been monitoring this for about 2 and 1/2 years. I had PET scans every 6 months, then changed to every 3 months with PET and MRI. I had lesions on my scapula, right and left. In May there was growth in both. I was given a choice for radiation or start oral treatment at this time. I chose the more systemic treatment for the whole body with the possibility for radiation on these spots later, because of very small lesions showing in the back.

My suggestion is

1. Find the doctor, or preferably a team of doctors, that you trust.
2. Do your research and ask questions, and receive the answers from those who will ultimately treat you. (Everybody has opinions, but you are the one who has to make the final decision.)
3. Remember that starting treatment is a life adjustment. I personally would not start treatment till the professional team suggests it. (I have no regrets waiting because I have trusted my team that much).

I feel that the biggest psychological hurdle with this is finding the trust that you are being treated by best team of your choice, research, ask question, and keep this forum as a favorite.

I hope this helps and eases the mind. Good luck and keep the faith there will be a cure soon.

[Brian Burson]

Re: How long until I'll need to start treatment?

by Brian Burson on Mon Aug 01, 2016 5:56 pm

I appreciate all of the information and support!

Thanks!

Continuing on this journey,
Brian

[jhorner]

Re: How long until I'll need to start treatment?

by jhorner on Fri Aug 19, 2016 3:32 pm

Hello Brian,

If you are indeed still smoldering, I would pursue the Darzalex clinical trial for smoldering multiple myeloma patients:

https://clinicaltrials.gov/ct2/show/NCT02316106

A requirement for this trial is an abnormal free light chain ratio, so I would see if there is a servicing facility within reasonable distance and, if so, aggressively pursue!

The most recent studies on this immunotherapy is that in combination with Velcade, Revlimid, and dexamethasone at induction, multiple myeloma patients are often achieving complete responses. It is also an impressive single agent – which is actually the clinical trial for smoldering, and the best part – minimal toxicity.

Here is a Beacon article on the subject:

"Myeloma Morning: Important New Darzalex Results, And More On Treanda In Transplantation," The Myeloma Beacon, April 23, 2016

I'm hoping that I smolder long enough to wait out the FDA approval of this drug for newly diagnosed myeloma.

Best
J

[Brian Burson]

Re: How long until I'll need to start treatment?

by Brian Burson on Sat Aug 27, 2016 1:09 pm

Thanks for the information on the clinical trial, jhorner! The nearest site for this clinical trial is almost 1,000 miles away from me, but, I filled out the online application for further evaluation to determine if I am at least eligible. It certainly would be worth the travel and expense.

Thanks again!

Brian

[Brian Burson]

Re: How long until I'll need to start treatment?

by Brian Burson on Fri Aug 25, 2017 6:56 pm

I have been away from the forum for several months and just getting reconnected again and realizing, one more time, the value of this forum.

I am being monitored by my hematologist, with blood work every 3 months. My serum kappa free light chain levels, kappa-lambda ratio, and M-spike numbers still remain high.