Last post of 2012

For the last blog entry of 2012, I will give a review of my fight of AL Amyloidosis over the past twelve months. The year started with recovering from my second stem cell transplant.  A stem cell transplant (SCT) is a medical procedure where an infusion of a strong Chemo-therapy (Melphalan in my case) is designed to destroy everything living in the bone marrow.  The plasma cells that generate the damaging protein reside here.  Two days after the destruction of most everything within the bone marrow, stem cells are thawed from a frozen state and returned to the patient.  The stem cells will re-colonize the bone marrow and begin to produce the red and white blood cells, platelets, and restart the immune system.  I had an autologous SCT where my own stem cells were used.  Stem cells from a donor can also be used, but it is preferred to use the patient’s own cells.  My recovery from the procedure was slower than I experienced from the first SCT.  I struggled with some complications requiring several visits to the hospital.  By the spring I was well enough to return home and continued my recovery.  The initial results showed a very strong response from the procedure.  The index of Lambda Free Light Chain proteins (λFLC) had dropped very close to a desired level.  But within several months the index numbers of the disease were back up to the pre-transplant level (see chart).  By May, there was discussion about starting me back up on Chemo again to push back the cells in the bone marrow that had survived the Melphalan and were creating the problem. In seeking more information, I made a decision to go the Mayo Clinic for a second opinion.  The Mayo and Boston University are considered the two premiere medical institutions in the US for treating AL Amyloidosis.  I visited the Mayo in July with a dear friend who helped me get through the airports and to my appointments.  I came away with the recommendation to continue to have my local oncologist monitor the levels of the λFLC and hold any treatment of chemo unless the numbers start to approach ten micro-grams per deci-liter (µg/dL).  The Mayo doctors begin to treat people with levels of the lambda protein above 4 mg/dL.  At the time, they felt I had been through enough medical abuse and said I needed a holiday for my bone marrow to heal.  The chart shows the normal range of these proteins is between 0.57 and 2.63 µg/dL.  For the balance of the year I have been working on my physical strength and attempting to fight my lack of energy.  I have been going to a physical therapist, but my progress has been slow.  There are days that I have felt weaker and days I feel I am getting stronger.  In December I returned to the Seattle Cancer Care Alliance to undergo an annual review of the SCT.  This became an opportunity to see how the disease had progressed in the past twelve months and any other issues that may have originated from the transplant.  During the review, the doctors told me that the level of plasma cells in my bone marrow is higher than they would like to see.  Typically plasma cells make up from two to three percent of the biopsy taken from the bone marrow.  My plasma cells level was at six percent.  Plasma cells above five prevent indicates a problem.  So this will need to be watched.  My lungs and heart showed good function and did not pose a concern.  It was shown that I have a low bone density and I am classified as having osteoporosis.  It could be that for all the medications I am on, several steroids, and the lack of daily physical exercises has caused this.  So I need to work out more, performing some weight bearing exercises.  Nothing was said about the Bell's Palsy that has become worse along the right side of my face.  At the end of the review, I received several shots to help strengthen my immune system.  A week after I received the shots I got sick.  This may have happened as a reaction from the shots or coming in contact with someone who had a bad cold, etc.  

In 2013, I expect to be on new therapies that are being used to fight this bone marrow disease.  I continue to hope that I will see an improvement in my physical condition.  I have spoken with many people who get well enough to resume their former life after they fight AL Amyloidosis.  Their stories help to keep me encouraged that I will regain some of my strength again.   Let’s all hope that 2013 is a great year for us.

We did have a nice Christmas.  One afternoon we took a ride on a two-horse open sleigh.  It was a large four row sleigh and we sat in the front row.  At one point, the horse handler gave the reigns to Rose for part of the journey.  Of course we all sang Christmas Carols and Jingle Bells.  It was like we had stepped back in time 150 years into a Laura Inglall story on our way to grandpa's for Christmas dinner.  It was a real treat.