January 12, 2013 – Good News – Weenie Chemo is Working

We are just back from Mayo and it was a quick trip, just one day of appointments.  It was a hematology trip, since we were just there at the end of November for transplant they didn’t want to see us, they are next month. 

Good news, her lambda free light chains went from 8.3 at the end of November to 6.7, and this is on weenie chemo!  She is currently on ½ dose of Velcade alone, normally it would be combined with a steroid and maybe another drug but they wanted to start her off slow and it is working!  So far there are no big problem side effects and for some reason her digestive tract issues are getting better.  She used to take 6 Imodium a day to keep things mostly in check and then she noticed things weren’t, well, moving like they should and started to reduce her dose.  She is now down to 2 Imodium every other day.  I call that progress.

On the last visit she had a plural effusion (water around the lung) and that has cleared up, she was and still is taking Lasix.  She was taking ½ a Lasix four days a week and she is still retaining some water but no one is real concerned about that.  They told her to double her dose so now she is taking 1 pill four days a week.  This is still a VERY small amount. 

They really have no idea at this point what is causing her to retain water and why the whole bowel issue is getting better.  The Velcade MAY(?) be doing something for the amyloid in the bowel, maybe inactivating it (not removing it though).  The inactivating it is my shorthand for what the doc said, bottom line is that they really don’t know what exactly the amyloid does to the intestines at the cellular level, just the side effects.

For now we are going to stay the course with the chemo and see if her numbers keep improving, if they stop improving they will just up the dose to a ‘normal’ dose of just Velcade but they don’t want to add dex (steroid) since transplant has been working to get her off the steroids and it would be counterproductive.  We will have another hematology meeting after a couple more rounds of the chemo and see where we stand and she will probably be on chemo most if not the whole year.  It is not impossible for the Velcade to put her numbers in the normal range but it sounds like this may not be likely, for now we are just trying to get the numbers back to where they used to be after the first round of chemo 6 ½ years ago.

That is all we know at this point but since it is good news I will take it.

Thanks.

P.S. This was a quote we heard on out prior visit on the shuttle ride from the clinic to St. Mary’s psych building:  ‘I was in the military for 6 years, I am a pilot but I don’t have my license, they took it away when they found out I was bi-polar, why would they do that.’  People are funny.