Herpes Zoster????

Adrienne's pain seems to be getting worse rather than better. At the same time, her lungs sound clearer so we think that the vinblastine did something. Without anything showing on the CT and without other symptoms, the current thinking is that the pain might be nerve pain caused by herpes zoster, commonly known as shingles, but without the skin lesions. Her pain is in the area where you would get shingles and it's possible that the virus is affecting the nerves below the skin. She's starting antivirals today and we're keeping our fingers crossed that this is the problem and, overall, things are better than what they seem. Not surprisingly, Adrienne is feeling pretty down right now, tired of the pain and fatigue, and also some other unpleasant chemo side effects.

Adrienne had an aranesp shot last week but her counts are still low so she needs a blood transfusion. That'll happen either tomorrow or the next day and, hopefully, that'll perk her up a bit and make things seem more positive. In the meantime, we're holding off on treatment and focusing on making her feel better. Then we can reassess.

Getting better...now what?

Adrienne is definitely feeling better. She's only taking 1-2 pills each day for breakthrough pain and once that's over, we'll think about tapering the rest. She saw the doctor today and her counts are still really low but she's feeling okay. Tomorrow she'll get an aranesp shot rather than a transfusion (her choice). We're trying to figure out what to do next, either go to New York and start a new trial or do another chemo here. The doc is really worried about her marrow so we discussed the possibility of doxil at a reduced dose. I sent an email to the cardiologist in Miami to make sure it's okay before we make any decisions. Add to that, City of Hope received the SGN-35 protocol and we understand that it's a therapeutic dose so that's good news. Her doc there thinks it'll be about 6 weeks until the trial opens; we'll figure 8 weeks just to be safe. She may need another biopsy so we need to check on that because it would probably mean an open lung biopsy, not exactly a fun proposition.

In the meantime, we're trying to enjoy some of the summer. We may head to Santa Barbara next week to see Daniel, who has a nasty eye infection. I hope he went to the urgent care clinic tonight as I asked him to. He's planning to come here for his 21st birthday later in August. I'm not sure how much fun I'll think that is but I'm sure he'll have a great time with his buddies.

Home...barely

We had to beg to get Adrienne out as she's still neutropenic but her pain is under control with the oral meds. Yeah!!! The current thinking is that this pain is due to the Vinblastine, not the Neulasta shot. Hopefully, it'll resolve itself over time. Meanwhile, she's taking high doses of oxycontin and neurontin, which makes her very drowsy, but relatively pain free. Thank you so much to everyone for your prayers and kind thoughts. We aren't out of the woods yet but we're looking forward to a quiet (HOT) weekend at home.

Oops

First, when moderating comments tonight, I accidentally rejected some. I hope you'll leave Adrienne a note again if you don't see your comment. We're overwhelmed by all of the love and support and she appreciates every note, as do I.

Adrienne is still in the hospital but seems to be doing better. She took a couple of walks today and is eating solid food. She's still needing the IV dilaudid but not as often. Tonight, they're upping her oxycontin and neurontin so hopefully that'll do the trick so she can come home. She's now neutropenic and will probably need blood tomorrow but we're still hopeful that tomorrow will be the day.

You're probably wondering what's causing all of this pain. We had originally thought it was the neulasta but now they're thinking that it's nerve pain from the vinblastine. Some of it could be from tumor but that certainly doesn't explain the extent or intenseness of it. Hopefully it'll go away on it's own. Right now the goal is to get her out of the hospital and then try to figure out the cause next week.