Wednesday, September 26, 2007

Clinical Trial Begins

Adrienne had a very long day at the hospital yesterday for her first test dose of the new drug called ABT-263. She takes this drug orally but there were more tests and 8 hours of blood draws after she took it. She was frustrated at the amount of time she spent there, at the awful taste in her mouth and general yucky feeling, and not being able to eat for 12 hours. She finally arrived home at 11:30 pm last night with the "fun" task of saving her urine for the next 24 hours. Thankfully, she is feeling better this morning. She went in for more labs today and to deliver her 24 hour urine.

Friday actually starts Day 1 of a 21 day cycle and it will be another long day. At least she doesn't have classes on Fridays. She again has to fast but she is supposed to bring a low carb breakfast with an egg with her and eat it when they tell her. They won't provide the food but they will reimburse her, which seems a bit ridiculous. She'll take the drug for 14 days straight and have blood draws each day since the drug can severely affect her platelets. This is only for the first cycle and hopefully things will settle down after that. Adrienne is a bit discouraged with the whole thing right now but I keep telling her it will get better. I hope I can keep my promise.

Monday, September 24, 2007

We Can Breathe Now

Adrienne has had a cough that's been getting worse over the past 10 days, making us more than a little anxious about her scans on Friday, but the results were not too bad. Here's the conclusion: SLIGHT INTERVAL ENLARGEMENT OF THE SPLENIC LESION WITH INTERVAL SLIGHT DECREASE OF RIGHT INFRAHILAR MASS FROM PRIOR STUDY/PET CT OF AUGUST 23, 2007. The cough is probably from allergies or a virus, but Adrienne can go ahead and start the study tomorrow. I suppose one good thing came of this: I found out that I can get a last minute ticket on United using my miles. If only I could do as well on a hotel. They are really expensive in New York right now.

September is childhood cancer awareness month so here's a few more facts about childhood cancer.

Childhood cancer is the leading cause of death by disease in the US and it kills more children per year than cystic fibrosis, muscular dystrophy, asthma and AIDS combined.

There are 15 children diagnosed with cancer for every one child diagnosed with pediatric AIDS. Yet, the U.S. invests approximately $595,000 for research per victim of pediatric AIDS and only $20,000 for each victim of childhood cancer.

The National Cancer Institute's (NCI) federal budget was $4.6 billion. Of that, breast cancer received 12%, prostate cancer received 7%, and all 12 major groups of pediatric cancers combined received less than 3%.

The American Cancer Society spends less than 70 cents of each 100 dollars raised on childhood cancer. (This fact was a surprise to me.)

Wednesday, September 19, 2007

Trial Approved

We just found out yesterday that all of the approvals for the clinical trial are now in place. Adrienne has a battery of tests on Friday (echo, CT, bone marrow biopsy, blood and urine tests) and she'll sign the consent. I'm a bit nervous to hear more CT results and just hope there hasn't been much progression in the last month without any treatment. The trial itself will probably start on Tuesday so next week will be very busy for her with daily clinic visits. School is also keeping her very busy but she seems to like her classes. I'll update more after we hear about the CT.

Monday, September 10, 2007

Childhood Cancer Awareness

Now that Adrienne's school schedule is set, the doctor is trying to arrange the necessary tests and get her started on the new drug, hopefully no later than early next week. Adrienne is enjoying Columbia so far. She's already stressed about the work load, but that's nothing new for her.

Here are some new You Tube videos developed to bring attention to childhood cancer since congress has cut funding to the National Cancer Institute and Children's Oncology Group, meaning that 400 fewer children will be enrolled in clinical trials this year. These videos, the kids in them, and the experience are all too familiar to us.

Tuesday, September 04, 2007

Nervous Days

Adrienne saw the doctor this afternoon. We've been worried about doing another clinical trial but he still thinks we have time to try as long as they monitor her disease very closely. The clinical trial that she's dropping out of has seen two responses in Hodgkin's Disease, but unfortunately Adrienne wasn't one of those. Right now, the itching from the disease is annoying. She scratched her foot so hard the other day that she made a nice bruise. They prescribed a new drug for the itching, which helps a lot but it also makes her very sleepy. So now Adrienne will get ready for the ABT-263 trial with more tests over the next two weeks. Here's some information about the drug.

Today was Adrienne's first day of classes. She had two: a religious studies class (for humanities GE credit) and a class on personality (for a psychology elective). So far, so good. She's also taking Intro to Film Studies and Finance/Accounting plus one additional class that she's hoping to get into. She won't need to work this semester so that should help make her schedule manageable, especially with her treatment. There's a shuttle bus from the campus to the medical center or she can take a short subway ride so that's quite convenient.

We're very nervous right now with the faster progression. The doctor promises to watch her very closely and change course quickly if needed. She isn't having symptoms from the cancer in her lung (such as pain, coughing, shortness of breath) so she's supposed to pay very close attention to that. She also isn't having B symptoms (fevers, night sweats, weight loss). If anything changes, they promise to make a change in her treatment. So we just watch and wait. I told the doctor today very directly that we don't want to make a short term decision that could compromise her health later and he acknowledged that.