Update on Meeting with Dr. Falk

Chris and I met with the cardiologist whom we like and believe to be the world expert on cardio impact from amyloidosis. He basically told us a few things:

-Chris continues to look good "clinically", i.e. through direct observation. No edema, no lung issues, good overall appearance.

-Her heart really has not changed much in the last 9 months. No reduction in ejection fraction, no further wall thickening, no other major changes. He did confirm that echocardiagrams were highly subjective and he is becoming more convinced of that over time. I found that very interesting.

-We discussed at length the options going forward. I asked specifically what would be the plan if Chris stabilizes at this 94% response (vs a complete response). He did not want to step into the role of the hematologist, and was really stating that BU needs to decide that next step with us. He did say, that the chance of a relapse is very high if in fact there is no complete response. This could happen soon or it could be a few years, nobody really knows. So this confirmed my strong belief that we need to continue to be aggressive with treatment as we try to get a complete response. We have all come to the conclusion that her heart is not strong enough for another stem cell transplant. This leaves oral chemo as the options, either Velcade or Revlimid. Dr. Falk indicated Velcade seemed to have a good success, but was a little more toxic. Again, he is going to leave the go forward strategy to BU.

-We also discussed the option of a defibrillator being implanted. He had mentioned this in an earlier discussion and has now ruled it out as not required. This of course is good news.

So overall, things remain stable, no further decline in heart health, but as we still have an abnormally high lambda light chain number of 40 (vs 26 as normal), there is still work to determine how to get a complete response. Chris goes back for another round of blood work in May and we will see what those numbers look like.

A few other happenings:

-April 4th was one year since Chris received the phone call from her doctor while she was playing tennis. Her doctor came in from vacation to meet with her personally and explain that something was wrong. At that time we did not know what we were facing, but we were very concerned. We heard all these words that we had no idea what they meant: mgus spike, Waldenstroms, Multiple Myeloma, amyloidosis. I was visiting Hartwick overnight and spent the entire night searching the internet for what I could learn. The worst part was reading that the average life expectancy for newly diagnosed amyloidosis was 13-15 months. I cannot describe the feeling and I pray I never experience it again. It would take a book to describe all my thoughts, blurring by my head at warp speed, and the complete fear I had. I got home and Chris and I cried all night long. So one year later, I feel as if we have dodged a bullet. Shots might still be fired, but we ducked one so far. We are still in the combat zone, yet we are running fast to find safe haven (a complete response). I know how lucky we are, and I can clearly state that we are grateful everyday. There are so many other stories of courageous battles fought by others. Some have been won, but the ones that break our heart are the ones that have been lost. We heard so many stories from people who donated to Stephen's ride. People wrote, "my brother succumbed to this", or "my husband was not diagnosed early enough and lost his battle". Just as I pray and am thankful for Chris' progress, I also pray for the strength of those who have lost loved ones to this disease. In many cases we know your names, we read the blogs, we see what others are going through, and our prayers are with you.

-I pushed Chris very hard to go skiing on April 4th. I really wanted her to get back into a normal sort of life. Get out, enjoy the snow, get some sun, and have some fun. I thought this would be an emotional milestone for her on her one year anniversary. She could conquer another roadblock. Walking up the driveway was a milestone. Driving a car by herself was a milestone. Helping others with a need was a milestone. I was hoping she would really enjoy a few hours of very slow, careful skiing, which she and I have enjoyed all over the US and Europe for years. Unfortunately it did not happen. The snow was very heavy, it was spring skiing with some bare spots, and she did not feel comfortable doing it. I really wanted her to push herself to do this, but I understand why she chose not too. Hopefully next year.

-One area that Chris now has to focus on is her cholesterol. This has risen over the last few months above normal. She has been trying to put weight on and has indulged in some great but bad foods. Kim's brownies, Caroline's chocolate mousse, unlimited ice cream - all with the intent to put some meat on her bones has now raised her cholesterol (and put pounds on me as well). So now we have the difficult task of reducing cholesterol while gaining weight. The food brought by friends has been the best. These people can cook!!. Yet now it is back to reality on the food selection. I take this as a good sign. Before, the BU doctors were saying that cholesterol was the least of her problems. Now, as she needs to focus on it, it means that we are thinking longer term. This is good.

-I will not steal Stephen's thunder on his fund-rasing efforts, but I will say that he, through all of you, has blown away the objective he set by an order of magnitude. It is beyond amazing. The letters, the donations, the inspiring stories have all been just incredible.

-Chris and I hope to get a short vacation away soon. She did not get to go to Florida, and did not get on the ski's, so now we will try to do some fun travelling and look back on a hell of a year.

Thanks again for everything.