I got a copy of the actual CT report and spoke with one of Adrienne's doctors yesterday, Dr. K, an adult lymphoma specialist and the head of City of Hope's lymphoma drug research program. Dr. K is very pleased that Adrienne's disease is stable in the lungs (the most critical location) and that the progression in the spleen has slowed down, even though it hasn't stopped yet. Adrienne's spleen isn't functional as a result of radiation so the only potential issue is pain, which she doesn't have. The PET scan on Friday will show us what's happening in the bone. Again, Adrienne doesn't have any pain but we have to be concerned about the lesion in her shoulder bone getting into the bone marrow, which would be difficult to treat.
The experimental drug experience is very nerve racking since you don't know how someone will respond. Add to that, the HDAC inhibitors like valproic acid take time, often months, to start working. Dr. K has one patient who was getting ready for hospice care and is now doing well on this drug and others who seem to be responding as well. He says, "Time is important, because we are on the brink of some findings about HL that might be immediately helpful." Sounds good to us.
Adrienne did an all nighter Sunday night finishing up a paper. I worry when she does that but she was working with other people and had a good time. She said it was a good bonding experience. Last night, when we spoke, she said she felt fine and was off to see Phillip Zimbardo who ran the Stanford Prison Experiment and wrote a book about the Lucifer Effect, why good people do bad things. Actually, she said she's feeling great but she almost fell asleep during the talk.
Curt has had a few upsetting days. After all of his scans and tests and getting a clean bill of health, his sister in Seattle was just diagnosed with esophogeal cancer. She seems to be taking it as well as you can take something like that. Curt will probably go up for a visit in the next few weeks.
Tuesday, March 27, 2007
Friday, March 23, 2007
Scans Today
Some Progression
Sorry for the late post. I love City of Hope because we get quick results. I hate City of Hope because we get quick results. Adrienne's disease is stable in the lungs and pelvis but she had moderate progression in the spleen. We aren't sure about what to do next except to wait until the PET scan and then make some decisions. We'll keep you posted.
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There isn't much going on this week. Adrienne has been very busy at college with what she calls "project month." She's working on a big survey exploring attitudes about blood donation. Luckily, she can conduct one survey for two classes (Research Methods and Social Psychology) but she still has to write a report for each class.
Adrienne has a CT today about midday. We're all hoping for good results but we probably won't hear until Monday. A reduction in her disease would be wonderful but we'll be happy with stability. Next Friday, she has a PET scan, which is more useful for her because disease in the bone doesn't show on the CT and we need to watch the lesion in the shoulder bone as well as the hips. She isn't having any pain or itching so we take that as a good sign.
We have another friend with Hodgkin's Disease who is going through a difficult time, Alese Coco. We met the family while looking for clinical trials for Adrienne, and it turns out Alese is treated at City of Hope, where Adrienne is seen. Her family referred us to Dr. O in New York and we talk frequently sharing ideas and our concerns for our girls. If you get a chance, go to http://www.alesecoco.org/ and leave a message in the guestbook.
Sorry for the late post. I love City of Hope because we get quick results. I hate City of Hope because we get quick results. Adrienne's disease is stable in the lungs and pelvis but she had moderate progression in the spleen. We aren't sure about what to do next except to wait until the PET scan and then make some decisions. We'll keep you posted.
-----------------------------
There isn't much going on this week. Adrienne has been very busy at college with what she calls "project month." She's working on a big survey exploring attitudes about blood donation. Luckily, she can conduct one survey for two classes (Research Methods and Social Psychology) but she still has to write a report for each class.
Adrienne has a CT today about midday. We're all hoping for good results but we probably won't hear until Monday. A reduction in her disease would be wonderful but we'll be happy with stability. Next Friday, she has a PET scan, which is more useful for her because disease in the bone doesn't show on the CT and we need to watch the lesion in the shoulder bone as well as the hips. She isn't having any pain or itching so we take that as a good sign.
We have another friend with Hodgkin's Disease who is going through a difficult time, Alese Coco. We met the family while looking for clinical trials for Adrienne, and it turns out Alese is treated at City of Hope, where Adrienne is seen. Her family referred us to Dr. O in New York and we talk frequently sharing ideas and our concerns for our girls. If you get a chance, go to http://www.alesecoco.org/ and leave a message in the guestbook.
Friday, March 16, 2007
Relaxing Week
Adrienne arrived here last week for her spring break, tired and with a cold. She is now much more rested and her cold is mostly cleared up. Yesterday, she dragged me out to do some shopping, which I hate, but I toughed it out. She got some nice things for New York and a dress for an upcoming black tie event with the Kravis Leadership Institute. It's wonderful to see the confidence and maturity she's gained in nearly two years at Claremont McKenna College. I can hardly believe that she'll be a junior and off to the east coast in just two months.
We get these nice little breaks and then back to reality. Adrienne has a CT scan next week and a PET scan the following week. We're just hoping that her disease remains stable and she can remain on the valproic acid. We are ever mindful of how quickly things can get out of control, as we've seen with so many of our friends, and we're thankful for what we have today.
After all of Curt's tests and a biopsy on his thyroid, all is well. The nodule is a goiter, similar to what his mother had as a teenager. He needs to be checked out again in a few months but at least we have a little break until then.
On a more fun note, our enormous backyard project is almost complete. Our house here in Henderson didn't have a pool, though it did have a spa. We decided when we bought it that we would add a pool. This project (or the mess as I prefer to call it) started last November and we've had a number of technical and weather delays. Next week, we are on the schedule to do the plastering and add water. The weather has been unseasonably warm here and we could have used it this week, but we're happy to have it ready for the summer. So, if you're coming to Las Vegas, we'd love to see you. No more house projects for me for at least a year! I'm sure Curt will be happy about that.
We get these nice little breaks and then back to reality. Adrienne has a CT scan next week and a PET scan the following week. We're just hoping that her disease remains stable and she can remain on the valproic acid. We are ever mindful of how quickly things can get out of control, as we've seen with so many of our friends, and we're thankful for what we have today.
After all of Curt's tests and a biopsy on his thyroid, all is well. The nodule is a goiter, similar to what his mother had as a teenager. He needs to be checked out again in a few months but at least we have a little break until then.
On a more fun note, our enormous backyard project is almost complete. Our house here in Henderson didn't have a pool, though it did have a spa. We decided when we bought it that we would add a pool. This project (or the mess as I prefer to call it) started last November and we've had a number of technical and weather delays. Next week, we are on the schedule to do the plastering and add water. The weather has been unseasonably warm here and we could have used it this week, but we're happy to have it ready for the summer. So, if you're coming to Las Vegas, we'd love to see you. No more house projects for me for at least a year! I'm sure Curt will be happy about that.
Friday, March 02, 2007
PFT Results
March 7, 2007
The pulmonologist compared Adrienne's PFT to two previous ones. Last year's was down a bit and this most recent one is very similar to the one done three years ago. Thus, there isn't really a change and he described it as a "mild restrictive defect." So, in the end, it was just a difference in interpretation. This is good news.
Adrienne will be coming home tomorrow for her spring break. The port is still a problem so we'll go on Friday to try to sort it out. Adrienne thinks it must be the valproic acid causing the problem since the issues began when she started that drug.
March 2, 2007
I got a copy of Adrienne's Pulmonary Function Test report yesterday and the results were a bit concerning. Her problem, a result of interstitial pneumonitis after her first transplant, was previously classified as a "mild restrictive defect." The latest report calls it a "moderate restrictive defect." Many medical issues are described as mild, moderate, or severe, each describing a worse condition. I don't know if this is a difference in interpretation or if it represents a real change. Yesterday, I had two previous PFT reports sent to City of Hope for their pulmonologist to compare. I was concerned that the node in Adrienne's lung might be causing a problem but the doctor said this is definitely from the pneumonitis and that the node isn't causing a problem. Our understanding was that lung problem would remain stable unless Adrienne had other treatment, and we've purposely stayed away from drugs like bleomycin that have lung toxicity.
Adrienne completed her application to be a visiting student at Columbia University in the fall. She should have an answer in mid-April. Here's an inciteful paragraph she included in her essay:
Now at Claremont McKenna College, I try to be a normal college student despite my cancer. I am majoring in Psychology with a Leadership Sequence; I currently work as an intern at the Henry Kravis Leadership Institute; and I am the vice president of Straight But Not Narrow, an activist club on campus. Though I’ve now had cancer for most of my life, I no longer plan my life around it; instead, I try to plan cancer around my life.
The pulmonologist compared Adrienne's PFT to two previous ones. Last year's was down a bit and this most recent one is very similar to the one done three years ago. Thus, there isn't really a change and he described it as a "mild restrictive defect." So, in the end, it was just a difference in interpretation. This is good news.
Adrienne will be coming home tomorrow for her spring break. The port is still a problem so we'll go on Friday to try to sort it out. Adrienne thinks it must be the valproic acid causing the problem since the issues began when she started that drug.
March 2, 2007
I got a copy of Adrienne's Pulmonary Function Test report yesterday and the results were a bit concerning. Her problem, a result of interstitial pneumonitis after her first transplant, was previously classified as a "mild restrictive defect." The latest report calls it a "moderate restrictive defect." Many medical issues are described as mild, moderate, or severe, each describing a worse condition. I don't know if this is a difference in interpretation or if it represents a real change. Yesterday, I had two previous PFT reports sent to City of Hope for their pulmonologist to compare. I was concerned that the node in Adrienne's lung might be causing a problem but the doctor said this is definitely from the pneumonitis and that the node isn't causing a problem. Our understanding was that lung problem would remain stable unless Adrienne had other treatment, and we've purposely stayed away from drugs like bleomycin that have lung toxicity.
Adrienne completed her application to be a visiting student at Columbia University in the fall. She should have an answer in mid-April. Here's an inciteful paragraph she included in her essay:
Now at Claremont McKenna College, I try to be a normal college student despite my cancer. I am majoring in Psychology with a Leadership Sequence; I currently work as an intern at the Henry Kravis Leadership Institute; and I am the vice president of Straight But Not Narrow, an activist club on campus. Though I’ve now had cancer for most of my life, I no longer plan my life around it; instead, I try to plan cancer around my life.
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