Good Pet Scan Results

Had a PET scan today, and the news was pretty good. After my last PET scan in September showed some regrowth, this scan after receiving one round of Ontak as treatment showed a reversal of the cancer activity. My doctor didn't have the full radiologist's report yet, but shared that there were 7 lesions of activity in September, and that 3 of those have completely disappeared. The other 4 lesions have all shrunk considerably as well.

The one area that isn't a complete positive is that the main tumor mass looked to be about the same size, if not slightly bigger. Of course I'd want to hear that this area shrunk as well, but it has to be taken into consideration that I didn't start Ontak until three weeks after my PET scan. Therefore the tumor mass could have been larger when I started the treatment, since we didn't have a true baseline.

So now that we have that information, I'll be starting my next round of Ontak tommorow. Its good going into this next round that the drug works. Its also nice to know that the doctors will be increasing the level of Ontak I'll be receiving, so hopefully I'll have an even better response. My doctor thinks 3 or 4 rounds of Ontak are likely, and he wants to take a scan after each round to follow it closely.

So my family and I are very happy with the results. The only thing bothering me now is some apparent infection in my mouth. I've had flareups of the GVHD in my mouth before, but this appears to be something else going on. It could be from the flu I had a few weeks ago, but I'm past the nasty flu symptoms at least. My energy is back up, I'm not coughing and blowing my nose constantly, and everything else is decent.

Ontak and Light the Night

Well its been a tiring week for me, and its kept me from writing until now. The 17th was the Light the Night Walk, and I'd label it a success. The final number that John Blattner Hates Cancer raised is over 6,000 dollars. So the group easily passed the goal I set of 5,000 dollars. Thanks again to everybody who donated money. Our total was part of over half a million dollars raised at the DC walk for the Leukemia and Lymphom Society. The weather at the walk wasn't great, but our team probably had over 20 people walking, which was a great turnout. I got to spend time with plenty of family that weekend, which was another great benefit to the walk.

The walk was Saturday night, and Sunday morning I headed over to NIH to the inpatient unit where I've spent over 45 days during the last year. It was nice to know I wouldn't be spending an extended amount of time there. I started the Ontak infusion that day, and didn't have any significant side effects. I had a slightly elevated temperature in the middle of the night, and a slightly depressed blood pressure. Those effects weren't enough to necessitate staying as an inpatient, so I was able to finish the five daily infusions as an outpatient.

As the week went on I started feeling a little more exhausted with the Ontak infusions. I assumed the cumulative effect of five infusions was starting to wear on me a bit, but a slight cough I had started the week with became more and more irritating. This past weekend my temperature went up to 101.9 at one point, and the on call doctors at NIH put me on tamiflu because of my symptoms. The following day I got a call from one of my nurses that I had indeed tested positive for influenza A.

Its been a rough weekend, and I ended up missing more time at work than I would have liked. I already am missing enough in my opinion with the Ontak infusions, and a bout of flu isn't helping me stay on top of work. The good news I can take from this is that the Ontak infusion was likely tougher to deal with because of the flu, and the next infusion might be even easier.

Right now its a few weeks until I'll start the next round of Ontak. The plan before then is to have another PET scan to see how the cancer activity is looking. Hopefully it will show that the Ontak has made some progress. One bit of news that my nurse practicioner shared is that the protocols at NIH that use Ontak have been giving the same amount of the drug that I received. However, they have noticed very little toxicity with that amount, and are changing their protocol to double the dose given to patients. So it is likely that since I handled the first round of infusions so well, that I will get the higher dose next time around. I'm certainly not going to complain about a little more ammunition being used to wipe out this cancer.

So right now I am feeling better than I was a few days ago, but still dealing with the fatigue and muscle aches that the flu can bring. In terms of treatment, I'm just waiting for the next opportunity to take the Ontak and further knock this cancer away.