Day 2 Return Visit

More tests today and some relatively good news. Chris had another echocardiagram today ( I think this is about the 8th one in the last nine months). We have learned that reading these is clearly very subjective so each person that analyzes the echo measures, analyzes, and sees different things. Thus it is most important to a) have progressive readings over time and b) have the same person do it. In our case, we are most comfortable with Dr. Falk as he has so much experience and has written so much based on his own research. We will have todays test sent prior to when Chris meets with him in April.



We also participated in the weekly support group meeting. I have written about this before. There are many stories told around the table; people who had a stem cewll transplant six years ago to those who are being evaluated for the first time. I have attended many of these and I know all too well the feeling of being overwhelmed by the words, the science, the numbers, all this stuff that people talk about and as a new participant you just sit like a log with an internal fear that is eating you up. There has to be a better way to help the newcomers than exists today. Just like we were, they are scared to death, they are trying to understand what on earth is going on, and they bombarded with all these tests and words, and complex things that just spin around and want to make your head blow up. Chris and I were shaking as we drove home after our first few days. This can be done better, I am sure. It is very clear that the strength, the willingness to learn, and the organization of the caregiver/advocate is probably as important as anything. I have seen caregivers who love their spouses or family members dearly but in no way are they capable of navigating the maze. They are conmforting, they hold their spouses close, but they are not prepared to be advocates, at all. Yet today I saw others who were ready for the battle. They asked a ton of questions, listend very intently, asked more questions, and learned from the others who went first. They are right on top of things, keep every test result, and do their own research. They will be both great caregivers AND great patient advocates.



More specifically for Chris, here are the numbers we have and my thoughts:



Lambda Light Chains: June '08=> 600+, December '08=> 40, March '09=> 40

This means no change in the amount of lambda light chains in her body. Good news is no increase, bad news is we are not at the target yet, which is under 21. This could be better, and needs to be.

Protein - 24 Hour Urine collection: June '08=>3800, December '08=>2800, March '09=>1800

This is clear continued improvement and of course is trending in the right direction. It is expected that this will continue to improve over the next few months. The target is about 150, so while there is clear improvement, there is more to go, which should happen.

Kappa/Lambda ratio: June '08 =>N/A (off the chart). Dec '08=> .2, March '09=> .29
This is very good, the target is above .25 and she is there. There are many ways to analyze the ratio, but when the lambda number is going up and the ratio is going up, this is a good thing.

BNP: June '08=> 269, Dec '08=> 286, March '09=> 204
This is the measure of congestive heart failure (CFH). Anything above 100 is a sign of some CFH, but Chris' is going down. This is good. The higher the BNP, the lower the cardiac output and the lower the blood volume pumped. This is trending down so we are pleased.

There are just some of the many tests, but here is how I sum this up:

Things are progressing in the right direction, they are generally getting better, but we are not over the finish line of a Hematologic Complete Response (the famous HCR). We want to reach the HCR objective. Tomorrow we do some more test, primarily kidney function, and then we will get our final report next week. They have already told us that they will want her back for blood work (not all the evaluations) in 4-6 weeks.

I have told them that when they think of Chris, they need to think of one word; aggressive. I do not want further protein deposition and we know how important getting an HCR is to life expectancy. I get the sense that some of the doctors at BU are almost saying "it's really good, stop worrying". Not me, I will only be comfortable when I hear the doctors say " congratulations, you have a complete response".

If Chris does need another round of chemo, we all agree that it would be after the summer. We lost the entire summer last year and we want to enjoy one this coming season. Chris would start in September. But, let's see what the final report says when we get it next week.

Another update tomorrow I hope. Thanks for checking in, it means a great deal to us.