If her FLC’s improve they are considering lowering or dropping the steroids all together on the 2nd cycle of chemo.
The FLC’s dropped 90% after 4 weeks of CBORD chemo. The doctors were amazed at the response. Three more cycles to go! Her kidneys are still holding in there without dialysis. Praying that they start to show improvement soon. Small victory today!
That is great news! Glad to hear that is going so well. Take each victory as it comes--they add up to winning the battle.
Take care!
Wonderful news! Did they decide to drop the dex or are they keeping her on it for now?
Still on it for the next 4 weeks then considering lowering or dropping. Finding out that it helps the nausea. Her FLC’s # were 1880 at the beginning and now 336. They gave us some ratio of 112 to 18.3 because of the poor kidney function.
Use the attached Biomarker tracking sheet to keep track of the trends in her numbers as she goes through treatment. These are the numbers that Mayo and Boston find to be most important to watch and track. Her numbers may go up and down a bit, but as long as the overall trends are headed down, then she is moving in the right direction.
8-BiomarkerTrackingSpreadsheetrev2.25.14.pdf (186 KB)Hey Matt,
Just wanted to check on you two and see if things are still going smoothly. I don't know if you are a dad or not, but if so, have a wonderful Father's Day!
Paula
Thanks for checking in on us. Carey just finished week 8 of chemo last week and we will find out Amyloid levels on Friday. On a positive note kidney function moved up to 12% last week. We are both school teachers and just started summer vacation today with our two daughters, so I am hoping she will be able to rest.
Fabulous news about the kidneys! I know how worried you were about that. Enjoy your summer off and time together as a family. My son in law is a teacher and he cherishes the time that he gets to spend with their 3 kids each summer. Please keep in touch and I will be praying that she gets an excellent report on Friday.
Paula
Good day, I haven’t been on for quite awhile, I just had a scare thought my amyloid might be back. My symptoms were much the same swollen legs, itching & fatigue. It hit my kidneys , heart & veins and arteries. I was a Stanford & mayo patient. They hit it with everything but saved my life! I was on chemo every week for a year & half. I’m clear for 8 yrs . Hang in their & yes, their is such a thing as chemo brain. I’d be happy to answer any questions. Please go where there is a amyloid center. So many new ways to treat the disease.