NORMAL PET SCAN WITH NO EVIDENCE OF MALIGNANCY

For once, we got some excellent news. Adrienne's PET scan is normal! Words can't describe how happy and relieved we are. We thought she was in remission but after all the bad news of the last few years, we didn't want to get our hopes up too much. Now we'll all sleep soundly tonight.

There may be an issue with Adrienne's liver, however. She had an ultrasound last year to investigate a possible clot but the problem seemed to resolve on its own. Now the problem is noted again. The doctor couldn't access the CT portion of the scan so we need to wait until tomorrow to figure out if further action is warranted. This seems minor compared to everything else and we'll deal with whatever comes our way.

We had a really nice Thanksgiving, though Curt wasn't able to be here. That means we'll have a second Thanksgiving this weekend, not that I need any more food! Adrienne had a really good visit, sleeping much of the time as college students do, but getting in some shopping too. She has a couple of really busy weeks coming up with exams and final projects, and will be back on either December 14 or 15 for her winter break.

Thank you for checking in with us. Adrienne reads the blog from school and would love to see comments from people who visit this site. Please leave your name with the comment because we can't always tell who they're from.

Happy Thanksgiving

Things are as normal as they could be for Adrienne. She is busy with her school work, her work at the Kravis Leadership Institute, and socializing with friends. After all the medical stresses of the last few months, she is now stressed out about her school work but is enjoying herself as well. All of us who went to college remember those days well.

Adrienne saw the new Harry Potter movie last weekend during a special midnight showing for CMC students. She had a lot of fun being out with her friends but didn't like the movie as well as the previous three. She and Daniel have been huge Harry Potter fans since the first book came out. Curt loves the books too so I'm the lone man out. We have several copies of each book because everyone wants to read at the same time.

Adrienne is excited to come home for Thanksgiving. She can taste almost everything again, just in time. She's especially looking forward to tasting sweets since that's been the last sense to come back. Except for the PET/CT on Friday, the weekend is pretty much open. We're hoping to get to see Rent this weekend.

Hip Surgery is On

After much going back and forth, the anesthesiologist at Stanford has agreed to clear Adrienne for surgery on December 19 and do her preop the Friday before. He seemed quite anxious about taking on an oncology and cardiac patient from the children's hospital but both her doctors there agreed that she is perfectly healthy for the procedure and the long anesthesia, 3.5 hours. Adrienne will probably spend two days in the hospital and will be discharged with a walker, after her pain is under control and she learns how to move properly to avoid fractures.

The surgery is called a core decompression. The top of Adrienne's femoral bone, which is the large bone in the upper part of the leg going into the pocket in the pelvis, is necrotic, dead. The doctor will drill at 4.5 mm hole from the outer part of the leg up into the necrotic area to relieve the pressure and hopefully cause new blood vessels to grow. The surgery is effective 80 to 90% of the time in regenerating new bone and avoiding total hip replacement surgery.

The PA over in surgery had asked for a copy of Adrienne's last echo, essentially an ultrasound of the heart, done in October. You may recall that she has mild cardiomyopathy resulting from one of her chemos, specifically adriamycin, in 1997. This was diagnosed in 2004 and she sees a cardiologist twice a year to moniter her condition. Her most recent echos have been very similar actually showing quite good numbers. I asked that a copy of the echo report be faxed here when they sent it over to surgery. I was quite surprised to see quite a significant drop in Adrienne's shortening fraction. Her ejection fraction, the more important measurement, is essentially unchanged. I understand that a drop in the shortening fraction precedes a drop in the ejection fraction. Up until now, she's been able to avoid medications for the problem, but it may be necessary in the next year. Adrienne isn't worried however since she had a new technician and she's sure she did something wrong. Adrienne's next cardiology checkup is in March.

Doing Much Better

Adrienne is feeling much better overall. Her voice is back to normal and she's been able to resume her regular activities. She still has numbness at the tops of her legs but it doesn't appear to be getting worse. Next up is a PET/CT scan on November 25, the day after Thanksgiving, to make sure she is in remission, as we hope.

Adrienne before Monte Carlo, a themed homecoming dance:

She Can Talk!

After nearly two weeks with no voice, Adrienne is sounding almost back to normal. She saw her radiation oncologist yesterday who said he's had four patients with similar radiation (remember this is brand new). Two have had this problem and two didn't. The two who had the problem began radiation with a cold. Aha! Her sense of smell is almost back to normal and she can taste many things. The doctor felt that she would have her full sense of taste back by Thanksgiving, making her very happy.

Adrienne also saw her BMT doctor and a neurologist about the numbness on the front of her legs. As we half expected, they weren't able to figure out what the problem is. Adrienne says it feels like neuropathy but that's generally in the feet and hands. She knows what neuropathy feels like, having had much trouble with it in the past, but they don't think that's what this is. She is supposed to call immediately if it gets worse, though it has seemed stable for a few days.

I didn't know colleges had homecoming but apparently CMC does. Adrienne asked me to send a dress down to her for Saturday night's festivities, the only dress in her closet that she didn't take with her. There have been special activities all week, culminating with a big football game (of course) and a Monte Carlo night and dance on Saturday night. Adrienne is looking forward to everything.

New Look, Some Decisions

I thought it was time to change the look of Adrienne's blog. I hope you like it. I'll try to find a good picture of Adrienne to post here too.

After much going back and forth, we found that it will be impossible to schedule the CIK trial during Adrienne's month off of school in December and January. I had thought that Stanford was being difficult when I asked for certain dates but it turns out that the cells have to go to a lab in Philadelphia for processing, and they are unable to accommodate us. We hope that Adrienne can hold a remission until May when she has plenty of time to do the trial. The radiation seems to have worked and we hope her disease will stay under control during the next 7 months until she can do the trial. She is scheduled for PET/CT the day after Thanksgiving and we are hoping for great results.

Adrienne will have the hip surgery as originally planned on December 19. We hope to do the preop after her PET/CT so she'll be ready to go as soon as she gets back from college on December 15. I'm not sure if she will spend a night or two in the hospital yet, but she would be staying at the adult's hospital this time. I want to make sure her pain is under control with oral meds before she comes home. After that, she will spend 6 weeks on crutches.

As a result of the radiation and apparent damage to the vocal cords, Adrienne cannot talk at all. This is quite worrisome as it has been over a week now without any improvement, so she will see a doctor this week. She also has some new numbness in both hips and down the front of her legs that needs to be evaluated.

Change in CIK Trial

Yesterday, while trying to schedule the CIK trial and follow-up labs, I discovered that the follow-up really can't happen at City of Hope as we had planned. The main issue is that Adrienne needs to have toxicity/safety checks at Stanford every three to seven days for the first 30 days following the infusion. Since this is a Phase I clinical trial, these checks are required by law and with the license through the National Cancer Institute. NCI is funding the study and they have very strict rules for how Phase I trials are conducted. This makes a lot of sense in terms of protecting patients but certainly messes up our plans. Adrienne will also need frequent labs, which we had hoped to do at City of Hope, but some of these can only be done at Stanford.

I have a call into the orthopedist to find out the risk of delaying Adrienne's hip surgery. Last summer, her AVN was between stages 1 and 2 (of 4 stages). AVN is a degenerative disease but the rate of progression varies in each person, typically between one and three years. The core decompression surgery she is supposed to have in December is only effective in stages 1 and 2. If you don't stop it then, you have to wait until stage 4, which means a total hip replacement. We really want to avoid that because it is a major surgery with lots of rehab and hips only last 15 to 20 years. Plus, it has been a major project to coordinate the docs at the children's hospital and those at the main hospital at Stanford.

So, stay tuned. Right now, we're thinking of moving the CIK trial up to December and delaying the hip surgery until March or May. It means Daniel would under apherisis right around Thanksgiving and Adrienne would get the infusion as soon as she finishes her final exams. That would give us the 30 day window needed for her follow-up. We hope that the final labs on day 56 can be collected at City of Hope and sent back to Stanford.