We're back, alive and kicking!

It's been over a year and 9 months since we've posted to this blog. Since then, much has happened. My wife and I feel as if we've lived an entire lifetime in that short duration.

Yes, we suddenly ceased blogging back in Nov 2010. We had to immediately divert and focus our attention towards dealing with a local recurrence of her synovial sarcoma. However, she is still alive today and well. So much has happened that I don't even know where to start.

Delay in Coley's while waiting for Graves' to subside

We're still waiting to resume Coley's. Unfortunately, there's been a resurgence of her Graves' disease (which started in April 2010). One of the symptoms that we have to be careful about is the elevated heart rate due to Graves'. We're trying to get that under control before considering resuming Coley's. There's the possibility that Coley's caused her Graves' disease to re-surge. However, there are other potential causes including the Pseudomonas sepsis itself, or a recent bad allergic reaction triggered by her PICC dressing.

An unexpected delay in treatment

Sunday night, she suddenly came down with spontaneous shaking chills and high fevers - three of them in the ensuing 24 hours. Her highest registered temperature was 105.6.

After the first fever subsided, we thought it was most likely some viral infection that was resolving. However, when the second one hit, we cancelled the flight back down to San Diego (no way she could walk with the severe chills). We waited for the chills to subside and the fever to spike.

Back home for the weekend. A four day break.

We're back home for the weekend. She just had a routine Chest CT done and we're waiting for the film lab to burn the disk. As a result of our little haitus, it'll be 4 days break in between Coley's Toxins treatments (we'll resume Coley's next Tuesday).

The MBVax protocol talks about loss of tolerance to Coley's Toxins. Patients who stop Coley's for more than a week are supposed to go back to the beginning and start at 0.001ml all over. Ours will be 4 days - not quite 1 week. We might consider reducing dosage. We'll have to discuss this with the Issels doctors.

Coley's Toxins IV #15 - A good fever given the circumstances

This morning, she woke up and felt good enough to to Coley's. There wasn't any "slight burning sensation" in the chest. Neither was there any noticeable heavyness. However, she did have some light yellow phlegm that had to be cleared with some difficulty. So we're thinking that the symptoms she felt yesterday were the beginnings of an upper respiratory infection after all. Perhaps our standard high dose Vitamin D3 - Sambucol - Lactoferrin mix nipped it in the bud, as it has done so reliably for the past 2 years. Only time will tell.

Postponed until tomorrow

Early this morning, she woke up with a slight burning sensation across the upper middle area of her chest. Later on, she felt a slight heavyness in her chest. It would eventually get better by evening time.

The doctors listened carefully to her lungs. They said her lungs sounded clear.

One possibility is she might be fighting off an upper respiratory infection. It's been going around here in the small ward where we are. There are no open windows here so it's hard to get real fresh air.

Coley's Toxins IV #14 - Another good fever.

Today's fever was another good one. She stayed above 102.2F for a good 2 hours.

The fever curve was quite similar to fever #2. The maximum temperature was 103.6F (39.8C). However, you'll notice that it took a little longer to reach its peak. However, once reached, it seemed to stay up there a little longer than recent fevers.

Post-fever appetite: Coley's #13

SAM 4285During my Coley's treatments, I eat breakfast around 8:30am, skip lunch, then I eat dinner after the fever subsides. Today I decided to eat some fruit during the fever, as I was getting quite hungry. I had a plum, then a banana. That wasn't quite enough for me, so after the fever came down, I went down to the cafeteria and asked for a snack. I had two pieces of cake (healthy cake with nuts and fruit) and a cup of apple juice.

Coley's Toxins IV #13 - Revamped fever charts. Figuring out the dry cough.

I've programmed a chart that's hopefully easier for folks to see how the Coley's Toxins fevers progress over time. I did it mainly for ourselves to be able to visualize how a given fever compares with the prior one - and also how it compares with the "best" fever thus far. The best one she's had is fever #2. It was long and protracted, and she stayed well above 102.5F for a good 2.5 hours.

Coley's Toxins IV #12 - 104 Fahrenheit

SAM 4245Today, we decided to be a little daring and upped the dosage from 0.006ml -> 0.009ml (a factor of 50%). We decided to do this based on her response from fever #11 where we increased from 0.004->0.006ml. That 50% increase resulted in a clearly better fever, but still not quite high enough.