Monday, June 14, 2010


I haven't been so great about keeping up with the blog. Last week on Tuesday I started my third session of the Velcade. Since it was the beginning of a new session I also had the IVIG so it was a long day made longer by the fact that my iPhone was giving me fits. After chemo my mom drove me out to the Apple Store in Oak Brook for a visit to the genius bar. Normally I would have let this go until the next day but the next day I was leaving for a consult at Mayo. There was no way I could feel comfortable leaving town when I wasn't sure the kids could reach me. My mom is a saint, as I said it was a loooong day!

On Wednesday the Kahan and I made our way up and over to Rochester. We had a beautiful day for driving and arrived without incident. I love my doctors and the care I receive at Mayo but as Susan and I entered the downtown area we looked at each other and said "Ugh". Mayo is not our happy place. There are just too many yucky memories for both of us.

Thursday was a day for tests and doctor visits.

First Dr. Buadi. I love his smile. His picture on the Mayo website doesn't do him justice. He looks way too serious and this is a man with a sense of humor. He is so knowledgeable regarding amyloidosis that even if the news isn't great I feel like I'll be okay because I have him in my corner. Fortunately the news was good. All of the tests confirmed what Dr. Gregory also believes, and that is that the Velcade is making a difference. Hematologically I am having a positive response.

I am scheduled to go back to Mayo August 9th. and repeat the all the tests. If the immunofixation is negative then Dr. Buadi will order a bone marrow biopsy. Immunofixation permits the detection and typing of monoclonal antibodies or immunoglobulins in serum or urine. It is of great importance for the diagnosis and monitoring of certain blood related diseases such as myeloma and amyloidosis. A negative number would indicate CR as they call it, which in Mayo speak is complete response. (Because amyloidosis is chronic and not curable they don't use the term remission). The bone marrow biopsy would help to confirm that. If I am in complete response Dr. Buadi would still like me to continue the Velcade for a full 8 sessions just to be sure they really knock it back. I seem to be tolerating the Velcade well so far but the effects are cumulative so we'll have to see. If when I go back August 9th the immunofixation number is positive then I continue on the Velcade and we will assess from there.

So that's the good news. The not so good news is that my kidneys are not happy campers. My creatinine was up to 3.9. Dr. Leung, my nephrologist at Mayo however noticed a correlation between my creatinine number and the weeks I am off velcade and therefore also off dexamethasone (the steroid). Currently I only take the dex (dexamethasone) on the day I get my chemo. Dr. Leung has recommended that I take the dex twice a week (on Tuesday with the chemo and then again half as much on Friday). On the week I am off chemo he wants me to stay on the dex twice a week although on that Tuesday I won't take quite as much as I take on the Tuesdays I have chemo. He has found this to be helpful in some of his other amyloid patients that are having similar problems. He is hopeful this will help my kidneys recover a bit and settle at a reasonable creatinine number. There is no guarantee this will work or even once I go off the dex that the creatinine won't go up again but we're going to give it a try. If I go into complete response I would be eligable for a kidney transplant if it came to that but I'm getting ahead of myself. Best to just see what the added dex does and go from there.

I am feeling optimistic and hopeful.


  1. I was thinking of Dr. Buadi as Ghana won against the Serbs in their World Cup opener. He does indeed have a wonderful smile and I enjoyed watching his fellow countrymen do their happy dance. What would they consider to be a reasonable creatinine number?

  2. They would really like to see it between 3.2 and 3.5