Wednesday, September 15, 2010


Okay so with the idea in mind that everyone should try everything at least once, and having a day to kill the Kahan and I decided to check out the Mall of America. We had been told that for some this is a destination, something people will actually plan a vacation around and that it is so large it can take a couple of days to see the entire thing. I don't get it. It's a giant mall with an amusement park in the center. I've seen it and I don't ever need to go back. It's a sad commentary on our society that this is someones idea of a vacation destination. I did however console myself (more on that later) with some excellent retail therapy and and a delicious sushi lunch.

So why did I need consoling you may ask. Dr. Buadi called while we were on our way up to this bastion of retail excitement with the not so great news that the immunofixation number came out positive and we are canceling the bone marrow biopsy. While I am responding to the velcade my amyloidosis is tenacious and I am not in response. I am of course very disappointed. I will continue on the velcade and we will reassess in January.

Overall I guess if I were going to give this trip to Mayo a grade I'd give it a B.

I have developed Cushings syndrome from the steroids. Cushing's syndrome occurs when your body is exposed to high levels of the hormone cortisol for a long time. The most common cause of Cushing's syndrome, sometimes called hypercortisolism, is the use of oral corticosteroid medication. Common signs and symptoms involve weight gain and fatty tissue deposits, particularly around the midsection and upper back, in the face (moon face) and between the shoulders, pink or purple stretch marks (striae) on the skin of the abdomen, thighs, breasts and arms, thinning, fragile skin that bruises easily and slow healing of cuts, insect bites and infections. As I mentioned in my previous post we have a plan in place to start decreasing the amount of steroids I take and the general consensus is that my side effects have been caused by this and not the velcade.

My numbers all indicate that while I am not in response I am still responding to the velcade so I am in no worse shape than I was when I came up here. While I had hoped for better news the news I did receive was not bad. I continue to tread water.


  1. Yeah, the shopping mall thing continues to be a mystery to me. (Thanks for saving the rest of us a trip to satisfy our curiosity) Assume Buadi thinks that continued therapy on velcade will move you toward that negative number and if kidney numbers remain stable, it's treading water as you say. Sorry the news wasn't better :-((

  2. Hi Susan, I would never plan a trip to the Mall but I did go when I was at Mayo. It was fun. My Kids all live in Minneapolis now so I can say I have gone more then once. But like I said never a vacation! Hope you have a good day. Stay positive. Thinking of you lots. love Judi Salkas