After reviewing Adrienne's CT last week and comparing it with scans in August, the doctors deduced that the node in her chest is smaller now and declared her in remission. In fact, they now believe that the node was not Hodgkin's. YYYEEEAAAHHH. Our insurance approved the trial just as everyone decided that she doesn't need it right now. We all know that the Hodgkin's will return at some point, but for now, we're just going to enjoy this remission.
This exciting news comes as Adrienne is looking at study abroad programs for her junior year. She has been somewhat overwhelmed with all the choices available to her. She has to figure out how each program fits with her academic requirements and personal goals. She still has plenty of time to decide but she likes having some direction and purpose. She spoke with her doctor about the options and he is happy to let her go some places that I wasn't so sure about, even to Prague.
Adrienne saw an endocrinologist last week and is now looking forward to some time away from doctors and hospitals. She needs a DEXA scan of her bones and a repeat thyroid test, but those can wait a few weeks. We are looking forward to her fall break in mid-October when she'll come to LV with a few friends from school.
Tuesday, September 26, 2006
Friday, September 22, 2006
Almost There
Adrienne finished up the last of the tests for the clinical trial. The good news is that her CT scan was normal and nothing is growing. In August, she had a 4 mm node, which is considered normal for most people, but for her, we know it isn't. Her oncologist still wants to move ahead with the trial as he says "we may have an opportunity to hit the tumor when its quantity is minimal." Now we are just waiting for insurance approval. We had asked for an expedited review but they won't do that for a clinical trial. This is the first time we've been through this, but they tell us it usually takes a week. Hopefully, Adrienne can start the drug on Wednesday as planned.
Otherwise, Adrienne is feeling well. She is settled in her dorm, though she continues to rearrange the furniture, and her classes are going well. The stress seems to be under better control now. The biggest project right now is for her to figure out what she wants to do for study abroad. I only have one requirement and that is that she can get good healthcare wherever she goes. While we complain often about our healthcare system and its costs, its still better than most places in the world. We know that Adrienne has always had the best of the best.
Otherwise, Adrienne is feeling well. She is settled in her dorm, though she continues to rearrange the furniture, and her classes are going well. The stress seems to be under better control now. The biggest project right now is for her to figure out what she wants to do for study abroad. I only have one requirement and that is that she can get good healthcare wherever she goes. While we complain often about our healthcare system and its costs, its still better than most places in the world. We know that Adrienne has always had the best of the best.
Thursday, September 14, 2006
Hurry Up!
All of a sudden, the schedule on the clinical trial has moved up. We found out yesterday that they have almost recruited enough patients for this phase and may close it at any time. Adrienne and two other patients at City of Hope are rushing to finish the tests and get insurance approval. If they don't get it all finished in time, she will have one to two months until they start recruiting again.
So, Adrienne has an echo today, her bone marrow biopsy and aspiration on Friday, and a CT scan next week. The insurance won't review the clinical trial request until Adrienne has signed the consent, which will happen on Friday before her procedure. We are asking for an "expedited review" to get this all done quickly. The drug is paid for by the National Cancer Institute but our insurance pays for all of the extra testing and doctor's visits. We are hoping Adrienne can start treatment by the end of next week.
Adrienne has been very tired lately. Her thyroid tests last week were mostly normal so it must be the changes in the cardiac medication. That plus the fact that she doesn't get enough sleep and burns the candle at both ends. She's looking at all the activities she has on her plate and is trying to minimize a few, including the yoga, which she's going to drop.
So, Adrienne has an echo today, her bone marrow biopsy and aspiration on Friday, and a CT scan next week. The insurance won't review the clinical trial request until Adrienne has signed the consent, which will happen on Friday before her procedure. We are asking for an "expedited review" to get this all done quickly. The drug is paid for by the National Cancer Institute but our insurance pays for all of the extra testing and doctor's visits. We are hoping Adrienne can start treatment by the end of next week.
Adrienne has been very tired lately. Her thyroid tests last week were mostly normal so it must be the changes in the cardiac medication. That plus the fact that she doesn't get enough sleep and burns the candle at both ends. She's looking at all the activities she has on her plate and is trying to minimize a few, including the yoga, which she's going to drop.
Saturday, September 09, 2006
Getting Ready for Clinical Trial
Adrienne saw her oncologist at City of Hope on Friday. He is hoping she can start the clinical trial by September 24. The only big issue is getting the tissue biopsy from her hip last May from Stanford to City of Hope by that date. As I understand it, they will study her tumor and follow how the new drug, SAHA, affects the genetics of the tumor. If we can't get it by that date, Adrienne will need new scans before starting the drug and our insurance company may not want to approve them so quickly after her August 10 scans. (Gotta love those insurance companies.) To prepare for the trial, Adrienne will have a bone marrow biospy next Friday. She isn't particularly excited about this prospect but is eager to begin treatment and get this thing under control. Since she will be sedated for the procedure, a friend from school will take her to the appointment.
Adrienne's school is going well, though she has been very fatigued, probably due to the change in her cardiac medication. She is also having a complete endocrinology checkup in the meantime. She is working at the Kravis Institute again and has started her yoga classes. The yoga is a bit difficult so she'll just see how it goes. Adrienne is also now the Vice President of Straight But Not Narrow.
Curt and I just got back from our little trip to Santa Fe and Sedona. The higlight of the trip was definitely a helicopter ride around Sedona and through the Grand Canyon. I've been fortunate to see some beautiful scenery but I've never seen anything as beautiful as this area of the United States. It was truly astounding.
Adrienne's school is going well, though she has been very fatigued, probably due to the change in her cardiac medication. She is also having a complete endocrinology checkup in the meantime. She is working at the Kravis Institute again and has started her yoga classes. The yoga is a bit difficult so she'll just see how it goes. Adrienne is also now the Vice President of Straight But Not Narrow.
Curt and I just got back from our little trip to Santa Fe and Sedona. The higlight of the trip was definitely a helicopter ride around Sedona and through the Grand Canyon. I've been fortunate to see some beautiful scenery but I've never seen anything as beautiful as this area of the United States. It was truly astounding.
Friday, September 01, 2006
Not Much News
Curt and I are going to take a few days off and drive to Sedona and Santa Fe. Since we haven't spent much time in the southwest, we thought it would be a nice way to see some scenery, eat some good food, and shop for knick knacks for the house. It also helps us avoid the airport.
I spoke to my sister last night who just returned from Europe. They landed in London the morning of the arrests and spent an hour on the tarmac waiting for a gate. On the following Sunday, they were supposed to fly on British Airways to Copenhagen for a cruise in the Baltic Sea. British Airways wasn't answering their phones and the police wouldn't even let people into the airport. Needless to say, they never made it to Copenhagen and wound up meeting the ship two days later in Stockholm with the help of trains and flights on another airline.
Adrienne started classes this week and is settling in nicely. She is really happy that she doesn't have Friday classes this semester. Next week, she starts her job as an intern with the Kravis Leadership Institute as well as a yoga class. Her cardiologist at LPCH didn't want her to do yoga but her current cardiologist says it's fine as long as she doesn't overdo it. Adrienne is the least flexible person I've ever seen so hopefully the yoga will help her become more "bendy." This weekend is the big "601" party where dry week ends at 6:01 pm on Saturday. Adrienne and her friends are really looking forward to it. Don't you miss those college days?
I spoke to my sister last night who just returned from Europe. They landed in London the morning of the arrests and spent an hour on the tarmac waiting for a gate. On the following Sunday, they were supposed to fly on British Airways to Copenhagen for a cruise in the Baltic Sea. British Airways wasn't answering their phones and the police wouldn't even let people into the airport. Needless to say, they never made it to Copenhagen and wound up meeting the ship two days later in Stockholm with the help of trains and flights on another airline.
Adrienne started classes this week and is settling in nicely. She is really happy that she doesn't have Friday classes this semester. Next week, she starts her job as an intern with the Kravis Leadership Institute as well as a yoga class. Her cardiologist at LPCH didn't want her to do yoga but her current cardiologist says it's fine as long as she doesn't overdo it. Adrienne is the least flexible person I've ever seen so hopefully the yoga will help her become more "bendy." This weekend is the big "601" party where dry week ends at 6:01 pm on Saturday. Adrienne and her friends are really looking forward to it. Don't you miss those college days?
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