[joe]

Re: Is relapse the only cause of high free light chain level

by joe on Mon Mar 21, 2016 10:31 am

Hi,

I am sorry. I wanted to add that I am being treated at Mt. Sinai in New York City, and I hope my answer to your question was ok.

Thank you and best of health,
Joe

[lrankin]

Re: Is relapse the only cause of high free light chain level

by lrankin on Wed Mar 30, 2016 10:16 pm

As you recall, I had great concern my husband's kappa light chain jumped from 7 to 42 in one month (apologize I don't have the measurement units handy).

They did retest and they were back down to 5!

When we saw Dr. Hoffman (prior to the retest), he did say it wasn't a good sign but did want to retest to get a baseline. Before the retest we were considering do 2 cycles of RVD and then Revlimid maintenance.

Not sure how this changes things.

If you recall, my husband did his autologous stem cell transplant in September 2015. His 100-day mark was January 2016. We needed to decide if we were going to maintenance, etc.

So if anyone is wondering if kappa light chains can fluctuate, they can. I certainly got differing opinions on this when investigating.

So, I consider this good news. I also appreciate the many responses I received.

[JimNY]

Re: Is relapse the only cause of high free light chain level

by JimNY on Thu Mar 31, 2016 7:52 am

Thanks for the update, lrankin. That's really helpful. I'm really surprised that the kappa light chain level could move around that much. The reading of 42 almost certainly was an error.

[Aclinkboca]

Re: Is relapse the only cause of high free light chain level

by Aclinkboca on Sat Apr 16, 2016 6:59 pm

lrankin,

I was reading through you and your husband's journey. I am scheduled for my stem cell har­vest­ing on April 27th and the transplant on the 9th.

I am interested in your experience with Sylvester and any helpful tips. How long was your husband inpatient and then do you have to stay at a hotel close by for a certain period of time?

I live in Boca and they told me that it's too far in time, so I should plan to spend a week in a hotel close to Sylvester.

AC

[MMFeb16,15]

Re: Is relapse the only cause of high free light chain level

by MMFeb16,15 on Sun Apr 17, 2016 8:59 am

Free light chains can be influenced by several other factors, such as inflammation (in my case knee joints), autoimmune diseases, and dehydration. My physicians (hematologists) are not concerned about its fluctuation.

I am IgG kappa multiple myeloma.

[lrankin]

Re: Is relapse the only cause of high free light chain level

by lrankin on Sun Apr 17, 2016 9:51 pm

Aclinkboca:

I wish I could be of more help. My husband's autologous stem cell transplant (ASCT) was done at Moffitt. He was outpatient and we were there for about 1 month. We stayed in an apartment that was approved by Moffitt.

My one experience with Sylvester has been with the one appointment we had with Dr. Hoffman. I am not sure if you are seeing Dr. Hoffman? I have a lot of confidence in him.

I can certainly give more details on the ASCT experience we had at Moffitt to help you prepare.