Day 3 Update

The third day of evaluation at BU was very uneventful. I'm not sure if that is good or bad. Chris met with the Nephrologist and they went through some of her numbers which are all generally good. Chris has had some minor kidney involvement, but nothing that is significant to have a long term impact. Overall the discussion went well and then turned to Stephen's bike ride and awareness campaign. Many doctors at BU are still buzzing a little bit about and bring it up when we go and meet with them.

So hopefully today we will here the results of the team meeting. I am almost sure that the direction we will take will be wait and see. The numbers are effectively flat and she is feeling very good, so they will want to see if any thing trends in any other direction. Yet in the long term this is un unsustainable strategy from my perspective. At some point, with the knowledge that Chris did not get a complete response, action must be taken. Without a complete respoonse, further amyloid deposition occurs. It might be a slow drip, but nobody leaves a dripping faucet as is for years. I would rather err on the side of action and want to get the leak plugged. Sitting idle for another 3-4 months really does not make too much sense to me, but we'll wait to see what we hear today.

In all the meetings with the doctors, Chris asked "what should I be doing" that she may not be doing currently. This was great to hear as she is really advocating now for herself. Last year she effectively sat in a minor stupor as things passed her by. She didn't really understand what the doctors were saying and just followed the directions given. Now she is asking the questions, seeking advice, getting a better understanding. It is great to see. The answer to the question about what she should be doing is always the same: Get strong, keep exercising regularly, eat well, and try to avoid getting sick. Efffectively her primary focus is the same it has been for the last 12 months - conditioning. Chris has been very good about that, but sometimes her now busy schedule gets in the way, like all of us. She has to make it a priority.

In the past, the famous "Friday Calls" have been major milestones. Does she have amyloidosis, yes or no? Will we do a Stem Cell/High Dose Chemo regime? Have we seen any progress since the transplant? Todays call will be uneventful I believe. Wait and watch.

On Monday we see Dr Falk to get the cardio perspective. We will hopefully know the new Ejection Fraction number and the left ventricle wall thickness. IF these are improving, that will be real cause for celebration. We have asked and been asked many times - "Can the heart repair itself ?" As I have stated before, there is no clear understandfing of this, no emperical evidence, but it has happend over time. If Chris keeps exercising hard, I personally am convinced that she will be living proof that her heart has strengthened.

Chris and I continue to read the other blogs of amyloidosis patients and relatives. Our prayers are with them and their families every day. I also continue to watch the clinical trials very closely. The two that are of most interest are Pomalidomide (CC-4047) and what is reffered to as V-MD which is a cocktail of Velcade, Melphalan, and Dexemethosone. They each seem to have very positive results. For those interested you can search on these terms with amyloidosis and see much of the updated information.

Thanks again for all the interest.