[MrPotatohead]

How is relapse diagnosed?

by MrPotatohead on Tue Aug 14, 2018 10:48 pm

Hello everyone.

I had a successful autologous stem cell transplant (ASCT) in April, 2017 which put my kappa light chain multiple myeloma into a stringent complete response.

I have blood tests done every month, and for the past few months my free light chains, as measured by the free light chain serum assay, have been slowly creeping up.

This month’s test showed a large increase, from 0.02346 mg/dL to 0.83781 mg/dL. My oncologist advised me not to worry about it, because the current level is still within the normal range.

But of course I am concerned. How does one diagnose an incipient relapse? I have heard that there are those whose blood tests show a “serological” relapse without clinical signs, and those who do exhibit clinical signs of progression (such as new lytic lesions or extramedullary tumors).

It seems strange to me to wait until one’s free light chains are outside the “normal” range once a clear pattern of increases has been established.

But perhaps that is a widespread practice.

[Arizonan]

Re: How is relapse diagnosed?

by Arizonan on Thu Aug 16, 2018 1:52 am

MP,

I can only speak to my experience. Once your free light chain levels go out of the normal range, it is true your disease is becoming more active. But, if you aren’t experiencing symptoms (as shown in future testing), it is not an automatic decision to resume drug therapy.

I had an autologous stem cell transplant in 2010, and afterwards my kappa free light chain level was around 10-20 mg/dL. There was a subsequent five years during which I had no symptoms and had no drug therapy. My kappa level slowly climbed and just this winter it exceeded 100 mg/dL. But still testing showed no symptoms. Since the winter, I have restarted a new drug regimen which is bringing the kappa level back down.

I was very lucky during the five-year period to experience such an indolent relapse. In your case, if it turns out your disease is becoming more active, the rate at which the activity increases will probably be important in regard to the decision about future treatment.

Good luck,

David

[Ron Harvot]

Re: How is relapse diagnosed?

by Ron Harvot on Fri Aug 17, 2018 2:55 pm

I had a slow relapse over nearly a year as the sFLC numbers moved out of the normal range. Once the sFLC kappa level went over 100, my oncologist modified my treatment. The ratio was over 25 at that point. Prior to the revision, I was on Velcade once every 2 weeks accompanied with 8 mg of Dex. Then he put me on weekly Velcade on 3 weeks off one, initially added in 5 mg of Revlimid (on 21days off 7) and 20 mg of Dex on same days I got Velcade. The Revlimid was bumped to 10 mg later. The numbers dropped but not into the normal range and have been stuck with the Kappa level at 40 to 48 and the ratio bouncing between 5 and 8. So we will likely change again this fall. So far my multiple myeloma is not aggressive as the movements are slow.

The decision to start treatment is an individual matter but generally whether it is initial diagnosis or relapse, once one of the sFLC markers goes over 100 most oncologists will start treatment or alter an existing treatment.

[Ron Harvot]

Re: How is relapse diagnosed?

by Ron Harvot on Mon Aug 20, 2018 11:57 am

MrPotatohead,

Attached is a great article on treatment after relapse and discusses the types of relapse (indolent vs active). This paper lays out a recommended line of treatment, but is not cookie cutter, as it depends on a number of factors, such as the patient's overall health, whether or not the type of myeloma is aggressive or standard risk, and types of treatment the patient may have had in the past.

Reference:

Dingli, "Therapy for Relapsed Multiple Myeloma: Guidelines From the Mayo Stratification for Myeloma and Risk-Adapted Therapy," Mayo Clinic Proceedings, April 2017 (full text of article [either html or pdf])

[K_Shash]

Re: How is relapse diagnosed?

by K_Shash on Mon Aug 20, 2018 3:11 pm

Thanks Ron,

Exactly what I have been searching for! I hope to digest this information over a few days, specifically as it may apply to me.

Your posts on this subject are really valuable to me since I, too, chose not to have a stem cell transplant, and my myeloma journey seems quite similar to yours, though mine started in late 2014.

My kappa free light chain level has been steadily rising over the past three (3) years and it has risen from the 12+/- mg/L level at the end of the induction therapy in late August 2015 to the recent 70 mg/L level. Fortunately, my kappa-lambda ratio is just above the normal range at around 1.9. I have been on 15 or 20 mg alternate day Revlimid for maintenance, and my Revlimid diarrhea has been under control with the cholestyramine. I am managing a round of golf a week, long, brisk walks (up to 1.5 miles at a time) and some business trips.

I think my oncologist's advice, "just stay the course," seems to be working overall, although I am quite concerned about my rising kappa level.

I am sure all of us in a similar situation appreciate this reference and would really appreciate your posts on this topic in the future..

I wish you continued success with your maintenance therapy, and judging by your biking activity, you must be managing a very active life, too.

All the best.

[MrPotatohead]

Re: How is relapse diagnosed?

by MrPotatohead on Wed Aug 22, 2018 4:18 am

Thanks, David and Ron

I guess many specialists do not swing into action with a resumption of therapy once light chains reach abnormal levels. As your experience attests, they wait until the increase is substantial, or until clinical signs of relapse appear.

That’s very helpful to know.

Thanks very much for sharing!

And thanks also, Ron, for the helpful link.