Tuesday, November 27, 2007

Would You Like a Velcade Glaze on that Turkey?

Yes, we started Thanksgiving day with a trip to the clinic to get the velcade infusion. Now, don't go feeling sorry for me, as I was accompanied by my mother, who wanted to see the set up at the clinic (oh, that infusion room is warm and fuzzy!), and more importantly, we returned home to put the turkey in and a few hours later we filled our plates with another one of Susan's great Thanksgiving Day feasts. Although we had a good group of friends and family, we did miss Julia. She'll be home in about 2 1/2 weeks. My appetite was not affected in the least by the velcade, as evidenced by my 3 pound weight gain (in one day!), which I'm now trying to shed.

My mother and Bob leave this morning. Bob has completed his list of home repairs (a short list this year) and Mom has taken in the "must sees" in Denver, including the new Art Museum, as well as a trip to our nationally known Tattered Cover Bookstore. They both look great and are doing remarkably well given their octogenarian status. Although we had a nice visit, I suspect they are ready to be back home, as living with 'roid boy, is about as easy as walking on thumb tacks or eggshells. Let's see, as Susan describes it, I don't speak for 3 days, and then, after an infusion, you can't shut me up. Does that mean that when I speak, they now listen? Doesn't seem to be the case. Oh well......

And as for those numbers? They continue to go in the right direction. The IGGs are now at 1596, down from 1898, and just in "normal" range, which is 700 to 1600. I know Rifkin would like to see them down a bit more, which hopefully will occur with this next cycle. I think I continue to be on track to go on a maintenance dose, starting 12/17. Maybe it will level out those ups and downs a bit. We can hope.

Time continues to be my friend, as more drugs are being tested every day. My friend, Ted, recently sent me some info on a new drug (carfilzomib), which is similar to velcade and is going into clinical trials right now. It holds much promise, as it works very much like velcade but without the nasty neuropathies, and doesn't seem to develop the resistance that the myeloma sometimes develops to the velcade. Just more evidence of the importance of that fundraising that so many of you support through your Light the Night donations.

We hope all of you had a festive holiday, are back to your preholiday weight, and are ready to cruise into the next series of holiday parties. Thank you again for all your support. We continue to be deeply grateful.
Love,
Dan

Wednesday, November 07, 2007

A Brief Update

I'm providing this update in response to a number of you who have emailed or directly asked me, "so what did Rifkin say at your last appointment?" So here's the latest. I saw Rifkin on Monday and he is ecstatic at the response. "Better than sliced bread," is how he described it. And he actually brought up the subject of how long I might have to continue with this regime. I will undergo an assessment (just blood work I hope) following one more cycle. He appears to want to rely primarily on the IGG levels to make a decision as to whether to continue with the current regime or to look at reducing the drugs to a maintenance dose. He said they've come up with a maintenance regime (but couldn't recite it for me). I feel very encouraged for at least 2 reasons. First, because this combo is working. Second, because there is some end in sight to the rigors of this chemo. So that's the status. I have next week off, then start the 4th chemo cycle on November 19, just in time for Thanksgiving.

and with that, Happy Thanksgiving to all.
Love,
Dan

Friday, November 02, 2007

Numbers Continue to Improve

Fortunately, it seems that the rigors of this latest chemo regime are paying off. The "numbers report" from yesterday shows the IGGs at 1880, down another 1000, and getting close to the normal range (700--1600). They've dropped 4000 points in 2 cycles. Even more promising is the movement on some of the other blood work. I don't understand much of this, but there are some other measures that are regularly tracked, and which appear to be improving as well.--some, by my reading, even appear to be in the normal range; a place they haven't been in many months. (anyone out there understand kappa/lambda light chains?) I'll get my questions answered by Rifkin on Monday. Given how hard the chemo is hitting me, Rifkin has scheduled more exams of me during the chemo cycle; I guess he wants to make sure I'm handling it OK. He seems mildly concerned about the level of fatigue and accompanying depression. Susan and I joked on the way home about just what he might be worried about. I guess it's not something to joke about, but I don't think I'm prone to "going postal", as they say. Geez, I don't even own a gun! What I do know is that staying on a course of treatment that is working is most important. So, I guess it's time to draw on the stubborn streak once again, and gut through this course of treatment.

Denver has calmed down after the Rockies trip to the World Series (no comment on the Sox sweep). We had tickets for Monday's game, but alas, the Rockies couldn't hold on to force a 5th game. It was a great run, we had a lot of fun watching, and now we're chanting, "wait 'til next year." I guess it was too much to expect that my childhood favorite, the White Sox, could win in 2005, and then the Rockies in 2007. But for all of us baseball fans, it was great fun.

Not much else going on here otherwise, as it seems I spend way too much time laying around. Julia is having the experience of a lifetime in South Africa; Catherine is studying for her Chartered Financial Analyst exam in early December and Susan is keeping the place going. My Mom and Bob will be visiting for Thanksgiving, so that will be nice.


Take care everyone, and I'll update you in another month.
Love,
Dan