05.31.10 Light Chains Still Fluctuating, But New Treatment Seems Hopeful!!

“Are we ready for this?” Headed to the wedding.

Since my ‘Re-staging’ via the bone marrow biopsy and other test results
indicated that my body was not responding to the current regimen of Velcade and Revlimid PLUS I was having a heck of a time with the Rev and steroid side effects, my doctor consulted with Dr. Lonial (as posted in my last note) and changed up my treatment. I am in the middle of the second cycle of 500 mg of Cytoxan, which is administered with weekly infusions of 1.6 mg/ml of Velcade. On those days I also take 40 mg of steroids, and so far, the side effects have been manageable. My sleep is very messed up and I get very wired at times, that’s the steroids. I do have some nausea which seems to come late afternoon, daily, and the anti-nausea pills usually get that under control. So far my weight is holding the same, however, I do not feel the non-stop senseless urge to eat like I did with previous rounds of higher doses of the steroid.

Light chains show a large increase this cycle

The chart above shows that my light chain number has climbed again,
but not as significantly as it has in the past, and Dr. Anderson was quick to remind me these results include a week off to keep my self in shape for the travel weekends. I was so thrilled, as was Dr. A., when we got the number down to 2,000 and felt Cytoxan was going to be my magical answer but then the following cycle showed growth through treatment with Cytoxan. We will continue and gauge a few more cycles, of course, but it was fairly disappointing to see such a huge increase. Yes, its been worse and at it could have been self-inflicted from taking the week off, but I really wanted the peace of mind of knowing we had found a regimen that works. As always I am secretly thinking about and hoping for another remission, but I try not to talk about it much.

The wedding party (posed pic afterwards)

May was a very busy month and I my doctor made sure I held up through two weekend trips
to Atlanta — one for Andrew’s Commissioning into the Marines and the other for Lindsey & Andrew’s wedding. Following that we had the BSA National Annual Meeting in Dallas, staying in a hotel near where all the lunches, dinners and exhibits and seminars were held (The Hilton Anatole). I saw my doctor last Tuesday for consultation about the previous cycle and forging ahead with the same treatment and managed to tell him that I think he is a really great doctor because he not only keeps me alive, he also allows me to live.

Lindsey & Andrew, Happily Married Now.

I readily tell anyone that asks that I love Texas and besides our wonderful home
and the great people, I also cite that I feel I came out ahead with medical care. The clinic at Emory was just so HUGE and it felt a lot like being in a cattle call, even though Dr. Lonial knew me personally and seemed very abreast of my case, the waiting for labs, waiting for a chemo chair, waiting for a nurse, was all amidst 100’s of people. Here at Southwestern, there are afternoons when I look around the chemo chairs (the “Community Room”) and I am the only one there. I feel I get the same quality of care but a greater level of service and attention to my needs. Less wait, less hassle. I have already decided if I have to do another stem cell transplant I will do it here at Zale, and not go back to Emory, I no longer feel affiliated.

Karyn, Lindsey, Andrew, Greg at Commissioning

To sum up the events of the past few weeks, we flew in and surprised Lindsey
by being present at the church ceremony for Andrew’s Commissioning, held at Stonebridge. It was a very nice time and we got plenty of pictures. We also attended the party out at his folks in Powder Springs, GA, that Saturday night and got caught up with Lindsey and Andrew, both of whom were remarkably calm considering their wedding was only a week away! While in town, we got to see a few friends, but it really was a quick trip and Dr. Anderson had checked my blood and given me platelets and a transfusion earlier in the week to make sure I had energy to go through with it. It was all Delta points and Marriott Rewards to make it happen and made a very nice trial run for the wedding weekend. We did not make it by the rental house where we still assume, no news is good news, our tenants aren’t complaining about anything.

Greg on my lap, Kathy, Kendra

The wedding weekend really turned out better than my wildest expectations
and I had a great time visiting with my sisters. Lindsey was beautiful, there were no major snags, and Andrew looked so handsome in his dress Marine uniform. The weather held even though it had rained Friday night during the rehearsal and we had to go over things inside, and actually the sun setting in the background on the couple as they got married was just gorgeous. I posted 170 pictures to a Facebook photo album! Greg and I took the opportunity of having all his siblings in the same town to get together for a brunch Sunday morning before we all headed our separate directions, we really enjoyed getting caught up and all promised to try to pick a date to get together again, perhaps in Charleston?

Greg, Karyn, Cody, Kristin, Lindsey, Andrew

I’ve been busy with my gardening and back to the doctor to resume chemo.
I am planning a trip to Illinois for a week at the end of July, when Greg goes to the Jamboree. He will be gone for three weeks, but I will still have the roommates here so we are not worried about the time I will be on my own. I would make it a very long trip to Illinois but am working with Dr. Anderson to make sure we get these cycles in, he will not let me take chemo at another clinic, though he is OK with another place checking my blood during an “off week”. The current cycle is 4 weeks on, 1 week off, with only 1 infusion per week. It means a lot less driving up and down I-35 for me (about a 45 minute trip).

Sisters Kendra, Kathy, Karyn (in front of Chateau Elan)

So summer is upon us and it is certainly already very hot in Texas.
People warned me. We sit out on the back patio for as long as we can stand it, and we let the cats out to play until they run inside panting and head straight for their water fountain. I think Texans lounge around in air conditioning a lot. We are loving it here and and very grateful for so many of the things in our lives, we praise God for all that is good around us.

As always, thank you for the continued thoughts and prayers!

Love, Karyn