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.

A little light

I spent much of the week on the phone with doctors, trying to get them to put some pressure on Seattle Genetics. It turns out they've been considering a Phase 1 trial in allo patients and now they decided to accelerate the schedule. Hopefully, it'll be available in early September. Of course, it's not done until it's done (there's the FDA and contracts to deal with) but the trial MD at Seattle Genetics seemed confident that they could get it through by then. This trial will only be available at City of Hope and MD Anderson so it's perfect for us. In the meantime, we'll keep an eye on Adrienne's disease and treat if needed with whatever has the fewest side effects.

Otherwise, things are quiet here. It's nice to be home for awhile with all the travel of the last month. Adrienne is taking two classes at UNLV and, while it means she has to get up really early, she seems to be enjoying it. Daniel is doing fine in Santa Barbara and will be coming here for his 21st birthday in August with a few of his buddies. I'm sure they'll have a great time.

Seattle Genetics Says No

All of Adrienne's doctors have agreed that SGN-35 is the best option available to her. Unfortunately, she doesn't qualify for the trial because of her allo transplant and the company has refused exceptions. Her doc at City of Hope made a plea for single patient access or compassionate use, even offering to cover some of the costs, and they have again refused. None of this is a surprise to us. The company, thus far, has been totally unwilling to work with anyone so we decided to wait until we really needed it. So, now we need it and the battle lines are being drawn.

After several days of contemplating the right approach, we decided to start with the big Seattle Genetics investors, asking them to open the lines of communication. Just this morning, I put letters in the mail to Bill Gates and Paul Allen asking for their help. Well, you know Bill Gates. Paul Allen, another Microsoft alum and one of the wealthiest men in the country, is also a Hodgkin's survivor. I have calls into Dr. O'Connor who offered to contact the president of the company, and the doc at City of Hope hasn't given up yet, scheduling a call with the chief medical officer who turned our request down. However, I know of other docs who have advocated for their patients to this company and have gotten nowhere. It seems that they have the keys to the castle right now and aren't willing to let anyone in. We know that the media is an option but we'd like to try work on this amicably first. Please, if you have any suggestions, send me email at alison95070@yahoo.com.