Wednesday, May 5, 2010


Yesterday I started my second session on the Velcade. This also included the IVIG treatment. The first time I had the IVIG I had a bad reaction where the drip had to be stopped and I was given some steroids. The nurses said that while that could happen again it's unlikely. My Mom also reminded me that the first time I had the IVIG there was a mix up and I didn't get it on the same day as the Velcade. When I get the Velcade I also get a steroid so perhaps getting the IVIG together with the Velcade and steroid today made the difference.

That's the good news. Unfortunately my creatinine jumped from 3.2 to 3.8 in one week, not good news. Creatinine is a chemical waste molecule that is generated from muscle metabolism. Creatinine is produced from creatine, a molecule of major importance for energy production in muscles. Approximately 2% of the body's creatine is converted to creatinine every day. Creatinine is transported through the bloodstream to the kidneys. The kidneys filter out most of the creatinine and dispose of it in the urine. Creatinine has been found to be a fairly reliable indicator of kidney function. As the kidneys become impaired for any reason, the creatinine level in the blood will rise due to poor clearance by the kidneys. Abnormally high levels of creatinine thus warn of possible malfunction or failure of the kidneys. It is for this reason that standard blood tests routinely check the amount of creatinine in the blood. Prior to my BMT my creatinine level was 1.8. It needs to be below 2 for another transplant. Normal Creatinine levels are between 0.6 to 1.2. Once it gets up into the 4's and approaches the 5's one has to start considering dialysis.

Dr. Gregory's office had me call my nephrologist (Dr. William Whittier) to see if he wanted them to give me additional fluids. While the kidneys like to be wet it's a fine line and we don't want to overload them either. Dr. Whittier looked at the numbers and decided on no more additional fluids and said we would look at the numbers next week. Less than a half an hour later I look up and there's Dr. Whittier, what a guy! In looking at me he says I look like someone who has a creatinine level of 3.3 but the 3.8 level is of concern. I could be dehydrated, I could be fighting an infection or the amyloid could be winning over the kidneys. If the amyloids are winning I have to start thinking about my dialysis options. Ugh!

If the amyloid is getting the better of the kidneys does this mean I may have to add another chemo drug onto to the Velcade? That will be discussed (at Mayo and Rush) after this second round of treatments but I really hope that is not the case as I am feeling okay and can live with these current mild side effects.

Another thing that has concerned me lately is it seems since I've been getting these treatments I experience a feeling like my brain is like a record skipping. It's so hard to describe but it's like this little wave goes over my brain that makes me a little dizzy and then it passes. I refer to it as being lightheaded but it's different than that. It doesn't happen all the time and I think it occurs more when I am tired. I've mentioned it to my doctors and they don't really have any answers but they also don't seem overly concerned either.

So all in all I feel pretty well and it's still awaiting game. Keep your fingers crossed for a lower creatinine level.

Finally my Aunt Barbara is very ill. She is my mothers older sister and the only other living member of their immediate family. Please keep her in your thoughts and prayers she is a wonderful woman and we love her.


  1. Rats on the creatinine but it's going to come down IMHO. The dizziness sounds a bit like vertigo...the way you describe it is how I've felt when a vertigo spell is coming on. Wonder what Buadi would say about it?

  2. I'll ask him when I see him in June. I also mentioned it on an Amyloidosis website and a couple of people who are also on the Velcade/dex protocol mentioned lightheadedness as well.

  3. Hi Susan. You're a great writer. Keep it up. Your I miss me blog troubled me like an episode of Nurse Jackie. I guess I concluded that "me" is never static for very long but we maintain that illusion about ourselves even without Amy visiting directly on us. It really is the journey. Strangely I was moved thinking about it last night while watching Robert Redford in Jeremiah Johnson. It's a dumb movie but somehow one of my favorites. Angry guy who destroys everything he touches and then wanders off alone based on the few random scraps of learning he pieces together--what's not to love?