More waiting

We're in a bit of a state of flux right now, trying to figure out the next steps. Adrienne's pain seemed to get a bit better when she started the antifungals but now it's back to where it was. She'll see the doc tomorrow and we hope to start her on something that's easily tolerated. We got confirmation that SGN-35 will be available in September but the dose might be too low to have any effect. We'll just have to wait and see what the trial looks like.

I've had my own little bit of "excitement" with vertigo, headaches, and stomach problems the last week or so. I totally forgot that I was hit in the head a couple of weeks ago with an enormous outdoor umbrella. My symptoms seem a bit better yesterday and today, with just some dizziness and blurred vision remaining. The doc said it could last a few months but I'm hopeful that this will be gone sooner.

Fungal infection?

I spent most of the day Friday looking into Adrienne's CT to see what it means. There are so many new nodules in both lungs that I didn't think it looked like Hodgkin's. The concensus is that this is probably a fungal infection along with disease progression, but perhaps not quite as much disease progression as first thought. The only way to be sure is to do an open lung biopsy and everyone agrees that it would be too risky. Adrienne is starting an antifungal medication today and we'll continue to watch closely.

We're always the gang hoping for infection rather than disease, but in this case, it's a mixed bag as these types of infections are difficult to treat and can last for months. Until the infection is gone, we can't treat the Hodgkin's, and there's a chance that this will get worse before it gets better. At the first sign of fever, we'll be off to the hospital to have her admitted. We're hoping that her pain, which is getting worse, will get better as the infection resolves.

Note to self...breathe

I don't have the report yet but I got the gist from the nurse practioner today. Basically, there's quite a bit of disease spread throughout both lungs now. Everything else looks pretty good and there's no explanation for Adrienne's pain, but it's likely due to a bone lesion, which wouldn't show on a CT. Except for the pain, she's feeling pretty good and has few symptoms from the disease in her lungs but we know that this can change quickly. We obviously need to do something and can't wait until September for SGN-35. We'd like to do the easiest chemo possible just to keep things under control for now. I asked the docs to talk to each other and come up with a plan to start after the July 4th weekend. I'll post when I know more.

Pain and scans

Adrienne is having some new pain in her back so she's going to have scans next week. We aren't sure what we'll do if the pain is caused by disease but we'll cross that bridge when we come to it. She's taking pain meds, although the pain isn't as severe as it was last December and hopefully it won't escalate that much. We can't feel anything in the area that's hurting and she doesn't feel the fullness from tumor that she felt before so we're hopeful that this is something small and isolated.

Adrienne mentioned to me that she heard from the pulmonologist at City of Hope recently. It turns out that her bronchial lavage was positive for adenovirus. For most people, adenovirus is a self-limiting infection but it can be quite serious in immunocompromised people. She doesn't have any pneumonia symptoms so no treatment is needed now but the infectious disease doctor and the pulmonologist said that this wouldn't account for the changes on Adrienne's PET scan last April. Oh well.

Once again, we wait.