I am still on the experimental Immunotherapy trial and really couldn't be happier with it. Really next to nothing on side effects when comparing traditional chemo and even better is that it appears to be working. I still have an enlarged lymph node but it really hasn't changed in size since I started this therapy 16 months ago. In talking with my doctor, he says that these Immunotherapies have a tendency to find a new equilibrium point where the cancer is neither advancing or shrinking. At this point I am OK with this outcome although the goal is always eradication of the cancer. My team here at OHSU has also said that I am one of their poster childs for this drug which is good to hear but also means that there are some patients that are not as lucky as I am.
Being on an experimental drug trial is tricky. I always have a bit of stress in regards to staying on trial because you have to be a very healthy and stable subject to remain on trial. I have been kicked off trials before and it is not fun, especially when the drug is working. We actually had a bit of a scare last fall due to my total bilirubin (TBILI, used to evaluate liver function) values being high enough that they didn't give me drug that week. A few days later we tested my levels and it fell into acceptable range. Two weeks later we were set to resume the trial and even with a four week break, my TBILI values were even higher! This definitely upset me because at this point it had been four weeks since I had received drug and if we skipped this week I would seriously be in danger of being removed from the trial. The drug companies have rigid rules and can kick you off trial for a myriad of reasons to help keep their trial scientific and looking good. Luckily, I have a stellar team here at OHSU. They made the call to administer drug anyway and lobby the drug company to make an exception. Keep in mind my TBILI levels were not elevated so high that my doctor was concerned of my health safety (they needed to be 3X higher for them to be worried) and honestly a high level is not nearly as threatening to my overall health as say, the bladder cancer we are trying to treat with this drug. On top of that I have taken many FDA approved drugs that basically say they will kill nearly 5% of the population that take it, so this seems like a stupid reason to kick me off but it is possible. Luckily my team went to bat and got me approved for a waiver. Of course since then my TBILI has been up and down with little rhyme or reason. We still scan every six weeks and I get treatment every two weeks and will continue this for the foreseeable future. When and if this drug gets FDA approval I will have the ability to take a break from this cycle and not have the rigidity of the trial. That will be a good day!
Speaking of good days, five weeks ago was a REALLY good day. Lorri and I got married in Maui and it was awesome. It was a beach wedding with a smallish group of 30. We were there for about a week and did some snorkeling, whale watching, paddle boarding, and just lounged around eating good food and hanging out with friends and family. Below are a few pictures.
While we were enjoying Maui our good friend Jennine was puppy sitting for us and she sent us this awesome gift on the day of our wedding:
As you can see our little Cider is no longer a tiny puppy. She is over 50 lbs now and progressively getting better behaved. Most of her bad behavior currently involves chewing on rocks and still chasing the kitties. I have found that regular exercise for her definitely helps calm her down. She is going to turn out to be a good dog.
Well hope that satisfies you readers for the time being. Hopefully next update isn't 8 months from now :-)
Congrats on your marriage! All the best!
ReplyDeleteThanks Kevin!
Delete