Waiting for Clinical Trial

We're in a holding pattern now waiting for the AKT inhibitor clinical trial to come online. Apparently, just one more approval is needed from City of Hope's internal review board, which meets on March 11. Adrienne is off school the week of March 17 and would like to start the trial the following week. As usual for a trial, she'll need scans, blood work, and a bone marrow biopsy...her poor backside. I can't even count how many of these she's had over the years.

Adrienne is really enjoying her classes this semester even though she's a bit overwhelmed right now with midterms and papers. She is still absolutely committed to graduating with her class in May, 2009. Unfortunately, she had a few more falls this week and has been extremely fatigued so driving is out again for the time being. The neuropathy resolves for most people within four to six months but, obviously, we hope it doesn't last that long. Thankfully, she isn't having any pain right now and she hasn't hurt anything seriously with the falls.

Next Steps

I went to California yesterday to go to the doctor with Adrienne to discuss next steps. She looked really gray early in the morning but perked up as the day went on and she ate a couple of good meals. Her blood counts were pretty good, not perfect, but much improved and she is regaining some strength. Hopefully things will go back to normal over the next few weeks as her body recovers from the chemo. As soon as the AKT inhibitor trial is ready, she will start that. It is just waiting for review board approval so it will be available when Adrienne is ready to start in about five weeks. If she responds to that, great. If not, she'll go on another trial with a drug called LBH569 (an HDAC inhibitor) combined with an mTOR inhibitor. We expressed our concern about doing a trial in its very early days but her doctor wants to start her on the lowest dose since she's had so much prior treatment. There's no question that she's much more apt to get side effects and we don't want to do anything to further injure her bone marrow, as that would be catastrophic. Adrienne will get a quick checkup in two weeks and then will have three weeks off from doctors. YYYEEEAAAHHH!

I signed up to donate blood yesterday. I've never been able to give before because I was severely anemic but a hysterectomy solved that problem. I showed up yesterday, filled out multiple forms, got a a satisfactory check by the nurse, and was ready to go. The nurse checked my left arm: no good veins. Then she checked by right arm: one vein looked good, a little questionable, but we hoped it would work. The needle they use is HUGE and the vein blew as soon as inserted the needle. First, the blood welled up under the skin and before she could catch it, it was splurting all over the place. Needless to say, they don't want me as a donor and I have a big, colorful bruise all around the area. Hopefully I'll get to help in another way with a bone marrow donation but my days as a blood donor came and went before I knew it. (Okay, it wasn't too much fun at the time but I can laugh about it this morning even though I'm disappointed.)

Stopping Chemo...For Now

We had a long talk this afternoon and agreed that Adrienne has to go off this chemo. The neuropathy is getting worse and she doesn't trust herself to even walk around campus. She fell again on Saturday night and has new weakness in her right hand. This is a tough decision but we feel it's for the best right now, especially given the recent scans. The plan now is for her to recover and regain her strength and hopefully start another clinical trial in a few weeks.

Neuropathy

While Adrienne didn't have any falls this week because she's been extremely careful, she has profound weakness especially with the right leg. She drove herself to City of Hope today but has decided that she is giving up driving for the time being, as she just doesn't trust her strength. Her doctor wasn't there today so she saw another doctor who gave her a neuro exam and Adrienne didn't get any specific feedback except to say that yeah, she's weak (duh!). We'll hear next week whether or not she can stay on this chemo given the extent of her neuropathy. Blood counts weren't too bad today with platelets down but acceptable. She got a shot of neupogen to stimulate white blood cells and aranesp to stimulate red blood cells/hemoglobin. Hopefully her energy will pick up.

I myself made an appointment at City of Hope next Friday to donate blood. I wasn't able to give in the past due to my own anemia but since my hysterectomy in 2006, I'm hopeful that my hemoglobin is high enough now to be able to help. They told me to take iron between now and then just to be sure. So here's my little plug for blood, platelet, and bone marrow donation. If you can do it, donate blood and ask to be added (for free) to the bone marrow registry.

Not much going on this weekend. Some good friends of ours from the Bay Area will be in Claremont this weekend showing their son colleges and Adrienne is looking foward to their visit. She has two papers and an exam due next week and we're just pooped here in Nevada, looking forward to a few days off. Enjoy your holiday weekend.

Title?

I always try to come up with a catchy title for this blog but I'm not too feeling creative right now. Today I have nothing inspiring or witty to say and I don't quite know how to describe the current situation.

Adrienne had a PET/CT on Thursday as we wanted to see how she's responding to the chemo before continuing. Obviously, we don't want her to have all the side effects that go with chemo unless she's getting a benefit. We hoped and expected that her disease was responding well. What we got was a mixed picture that no one could figure it out. On Friday, she had a CT with contrast to get more information. Here's what we know: the tumor in her spleen is virtually gone, the tumor in her lung has shrunk about 30%, and there's some new activity in the hilum (near the lung) and in the subcarinal area (near the esophagus). Both of these are quite small (under 2 cm). There's also some diffuse activity in the mediastinum that apparently has been there but we didn't know about it.

So what do we do? It's a judgement call at this point. There aren't any trials open right now (though something is coming soon) and Adrienne has had all the other chemos out there. Her onc talked to the head of the lymphoma service and we all agreed to continue with this chemo for a few more cycles. Her big tumors have responded so we know it's doing something. After nearly two days of questions, she had chemo at a reduced dose yesterday. We added another antiemetic (Emend) and hope that helps control her nausea better. Hopefully the other side effects, especially the neuropathy and low platelets, are better this time. She's going to see the doctor once a week and we'll just watch things closely.

I keep expecting things to get easier or to get a little break, but it's just not to be.

Another Loss

We lost another friend this week, Sarah Hawthorne. She was an amazing person who offered her wisdom and support to many, many people on the Webmagic Hodgkin's forum. Similar to Adrienne, Sarah relapsed after an autologous transplant and recently started a phase 1 clinical trial. She died shortly after that, stunning all of us who knew her. As Brian said, "We all tend to settle down into our specific roles here on the board - the joker, the healer, the parent, the hero, the fighter, the librarian, the cheerleader - Sarah was one of the few who filled all of the roles. As sad as I am for myself, for those who've known her from the start, and those who had barely met her, I feel most sad for those who will come after and not get to know the light, happiness and love that is Sarah."

Adrienne's platelets came up a bit on Wednesday so she was able to skip the transfusion. She still has some hideous looking bruises on her foot and butt from her falls but at least they aren't hurting so much any more. Since her chemo was cancelled this week, she came home yesterday and will go back to California on Sunday. She is very fatigued and pale, but otherwise is feeling well. She has scans next week and if her disease is stable or smaller, she'll get a reduced dose of the same chemo. If there's been any progression, she'll start another phase 1 clinical trial. Scary times right now...