Results of Second Opinion

Yesterday we went to Denver to get a second opinion on how to proceed with treatment for Doug's recurrence of MM. I am thanking God for guiding us to get this opinion now. We saw Dr. Jeff Matous who was Doug's transplant doc in 2009. Dr. Jeff is an amazing guy. He goes to all the big myeloma conferences and often is a speaker, presenting papers. He knows all the latest stuff on MM. He is also a really great human being.

Dr. Jeff told us that we have "lots of options". He agrees with what Dr. M in Salida wants to do (Revlimid and Dexamethasone) but with one important difference: we will be using a new type of blood test (FreeLite) to follow up after each cycle (each month) instead of the old test after every two cycles. Jeff says - "You can't wait two months, we need to know right away if this is working or not." Dr. Jeff also agrees with the necessity of Zometa.

Dr. Jeff laid out - actually wrote out for us - a flow chart. If the Rev/Dex doesn't lower the light chains enough, then we go to plan B, which is to add Velcade to the Rev/Dex combo. I won't go into all the options now, but he wrote down seven different drug combos, going from the simplest to more complicated. The more complicated, the more side effects. Option #5 is a second stem cell transplant -- Doug says "no way!".

When he was looking over the previous lab results that were done in Salida, Dr. Jeff noticed a startling thing: the Salida myeloma panel is sent to Mayo Clinic, which uses different lab units of measurement. So when Dr. Jeff was talking on the phone to Dr. M in Salida, they were actually unknowingly talking apples to oranges.

Mayo uses mg/dL  = milligrams per deciliter.
Almost every other lab in the country uses mg/L = milligrams per liter.
Huge difference!

The October light chains were reported as 47.3 mg/dL - spoken informally over the phone as "47.3"  Dr. Jeff heard 47.3 and thought 'thats high but not so bad' when the two docs were talking. When he was looking at the actual paper, he noticed the mg/dL and said "Wow - that would be 473 in our lab!" Much higher than he was thinking - not good.

So pay attention all you other myeloma patients - make sure if you use more than one doctor that they are not comparing apples to oranges!  I know Mayo is an entity unto itself, but they should get with the program and conform to the rest of the country, or at least make the mg/dL in bold print so it is easily noticed.

We will still go to Salida for the monthly blood draw and for the Zometa - Dr. M will be working closely with Dr. Jeff and sending all reports to him. We will be depending on Dr. Jeff to make all the important decisions if we have to change course. We are comfortable with this plan.

As we were leaving the clinic, Dr. Jeff asked us what route we were taking home - he told us a better way to go, and even drew a map so we wouldn't get lost. What a guy.

We had good travel weather, good road surfaces. Woke up to snow this morning. On a sad note - we had to euthanize our little Chester chihuahua this morning. His heart finally gave out after over a year of medications. This will be the first time in 33 years that we are dogless. I don't want another dog right now.

Love to all.