I am a 40 year old mom
of 2 living in Waterdown, Ontario. In 2016 I was diagnosed with primary AL Amyloidosis with multiple organ involvement.
My symptoms started as far back as 2014, but it took me years to get a diagnosis. It is a rare disease and many doctors don’t think to test for it.
I’m one of the lucky ones who got a diagnosis in time and was eligible for a clinical trial for a new drug called NEOD001. I receive this drug as well as a chemotherapy cocktail known as CyborD. I have been in treatment since August 2016.
There have been many hurdles along the way. Soon after starting treatment my sodium levels dropped and I was hospitalized for a few days until they normalized. Back to treatment, and things were progressing ok until I ended up with a partial bowel obstruction and ogilvie syndrome(stunned bowels). I was hospitalized again, this time for two weeks, on a liquid diet, getting all of my nutrients from an IV until I slowly recovered and built up strength. Once again back to treatment!
A few months later an umbilical hernia I had developed during my pregnancy with my second son became incarcerated and I needed emergency surgery. I was considered high risk but thankfully came through the surgery with flying colors!
Since this surgery in October of 2017 I have continued to heal. I am not considered to be in full remission yet…but I know I am close. This trial drug is doing remarkable things and I am actually shedding the amyloid deposits in my body! The organ damage caused by the amyloids is reversing. I’m seeing great results!
I have no idea what my future holds, but for now I am so grateful to be here and to be healing!
Lori
Canada
Submitted 01/12/2018
This story is intended to convey a personal experience and, because every person’s experience is unique, should not be relied upon as a substitute for professional healthcare advice.
I lost a friend to this terrible disease in 2013 ?. I’m so happy to hear about this new drug and that yours was caught early. I hope you will soon be in remission.
I have Amyloidosis-light-chain. I would like to visit with some one who has this. I found out I have this 9 mo. ago. Do you know of a new drug for this? I am desperate, scared and don’t know what to do.
Hi I am from Peoria, IL. USA. I was diagnosed with AL Amyloidosis in 2006. I had a stem cell transplant in 2007. My kidneys were damaged beyond repair and was on dialysis for 3 years. In 2013 I received a kidney from a young lady who no longer need her kidneys. Since then I have been to Mayo Clinic every 3 months and am currently on Darzalex. The Amyloidosis are getting under control with treatments and hope to be in remission by July. I know I am fighting a battle that will be ongoing as the antirejection medications suppresses My immune system but I need the kidney and the medications. I am very compliant with my treatments and medications. I choose to live in faith and joy. I give the glory to God as I am week but HE is strong. God is good all the time
You are an inspiration, Loris! Thank you for sharing your story.