Back in Claremont

Yesterday, we awoke early and drove to Claremont. The traffic wasn't at all bad so we arrived at City of Hope in plenty of time. Unfortunately, the machine that processes the blood was having trouble so we waited a really long time to see Adrienne's oncologist. We discussed her scans and, given her history, everyone believes that the spot in her chest is Hodgkin's Disease. Thankfully, it is very small. The options he presented were to watch and wait, treat with gemcitabine, or proceed with the clinical trial. Adrienne and I both rejected the gemcitabine since she had progressive disease the last time she got it and it makes her feel pretty crummy. We decided to proceed with qualifying for the clinical trial. Adrienne will go back in two weeks to get whatever tests she needs and we'll follow up with scans in October. She may start the trial before that or after her scans in October. We all feel pretty good about the decision. The trial uses a new drug called SAHA, which works to modify the genetics of the tumor. It's a new class of drug and is not like chemo, and therefore, the side effects are not as severe.

The doctor commented on how steady Adrienne's health has been. Her weight was only .1 kilo different than last April, her heart rate was 4 beats per minute different, and her blood counts were almost identical. She has been quite tired lately and the doctor thought it was time for her to see an endocrinologist so she will do that in two weeks when she returns to qualify for the trial. It's possible that her thyroid isn't functioning right due to her radiation.

Adrienne also saw her cardiologist on Friday. He was pleased to see her doing so well. He is upping the amount of Coreg she takes to get her to a therapeutic level. He always comments on how small she is so he likes to increase her meds very, very slowly, which is fine with us. The dose of Enalapril will stay the same. He also said she could do some light yoga though he cautioned against too much cardio which could stress her heart.

Adrienne moves into the dorms tomorrow, Sunday, and starts classes on Tuesday. She is really happy to be back at CMC with her friends.

A Bit More Info

We are making some progress, slowly but surely. City of Hope found the CD of Adrienne's scans and they are reviewing them now. The doctors there are discussing her case and will have a number of options for us when we visit on Friday. It appears that Adrienne qualifies for a Phase II clinical trial at City of Hope with an oral chemo called SAHA. There are other treatments available too. Our goal is to find something with the least amount of side effects and doctor visits so she can continue at college while keeping her disease under control.

Adrienne is busy packing and getting ready to go back to college. We'll drive to LA on Friday and move her into the dorms on Sunday morning. I'm hoping to be on the road by about noon on Sunday to beat the traffic since the LA-to-Las Vegas corridor is a busy one. We are actually a lot closer to her here in Las Vegas than we were in Northern California so I'm looking forward to the shorter drives.

Adrienne's Birthday

Today is Adrienne's 19th birthday. I can hardly believe it, mostly because I can't imagine that I have a 19 year old daughter and a son who will be 18 tomorrow. I really don't feel that old.

We don't have much news to report. I sent a CD with Adrienne's scans to City of Hope last Friday and they somehow misplaced it. They found it yesterday and are now discussing next steps. We'll see Adrienne's oncologist next Friday as we head back to Claremont McKenna. Adrienne will also see her cardiologist that day. We're very pleased that her cardiac function has improved and that the side effects of the meds are almost nonexistent. Hopefully we'll have a plan for managing her Hodgkin's Disease after that visit. Adrienne is feeling fine but this whole thing weighs heavily on all of us. I can only imagine a day when none of us has to worry about cancer.

Warm PET Scan

We were hoping for a totally clean PET scan yesterday. What we got was termed a "warm" PET scan. The disease in Adrienne's hip has resolved but there is a 4 mm node with moderate uptake in the chest. This is too small to diagnose, but having been down this road before, we can be pretty sure that this is Hodgkin's Disease that will grow larger over time. Adrienne's doctor at Stanford advised us to wait four months and repeat the scans. Adrienne doesn't feel comfortable waiting that long (nor do we) so we are sending the scans to City of Hope for a second opinion. We aren't sure what kind of treatment would be appropriate but we are looking at chemos (hopefully oral) that have minimal side effects to keep her disease under control. Our wish is that some of the research with monoclonal antibodies and radioimmunotherapy will come to fruition in the next year or two.

Besides the doctor visits, we had a good trip back to the Bay Area visiting with friends and even seeing my sister before her family's trip to London (they arrived safely the morning of the arrests). Even with yesterday's events in London, our flight home was only delayed by 30 minutes and the security line at the airport was very short. We had taken carry on bags but checked them for the trip home because, of course, we had shampoo, creams, and the like. It was kind of funny being at baggage claim with three times as many people as usual. We saw several very small bags (probably toiletry kits and the like) coming off the turnstyle looking very out of place.

Visit to the Bay Area

Adrienne is scheduled for her PET/CT on Thursday at Stanford, with checkups with her oncologist and radiation oncologist. She doesn't want to have the tests done at City of Hope anymore because they don't have the combined PET/CT like they do at Stanford. She has to go for one visit for the CT (drinking horrible stuff for 24 hours before) and then back for the PET. Since we know that she's PET-positive and that her last relapse did not show on her CT, it seems that the combined PET/CT is the best thing. We're thinking that scans every four months is probably a good schedule.

Adrienne's doctor at City of Hope has suggested a new drug called SAHA. It is in Phase II clinical trials right now for Hodgkin's Disease and has been very effective for other tumors. It's an oral chemo with minimal side effects so we'll discuss that along with some other treatments in the event that Adrienne's scans show that she's not in remission.

Adrienne had a good visit to St. Louis and enjoyed seeing her friend. She's never been to the midwest before so it turned out to be quite a cultural experience. Toasted ravioli was high on her list of new experiences, but sushi is still preferred when possible.

The house is coming along nicely. We actually have a few chairs now and some TV, though our satellite Dish Network is giving us a real hassle and getting service is tough in this area. We've heard that cable isn't good around here so that's why we decided to go with satellite. Hopefully everything will be working soon.