Change of Plans...AGAIN

Trent and I visited the radiation oncologist, Dr. Kokeny, on Thursday.  She told us that she, along with the other doctors, did not think that radiation was a good option for us at this time.  After all they learned about Trent on Wednesday, they all agreed that he needed a systemic treatment and that radiation would possibly be used sometime in the future if a tumor became large enough to be symptomatic.  After talking with her for a while, Trent and I agreed.  We then headed upstairs to see Dr. Gouw.

I was a little apprehensive about what we would hear from Dr. Gouw, but even more curious.  Dr. Gouw is amazing and I know he is doing his best for Trent.  He told us about a new drug that has only been on the market for three months and is FDA approved.  It is called Pazopanib.  It is not traditional chemotherapy that is cytotoxic, meaning it kills cells.  It is a targeted inhibitor, meaning it prevents an action in a chain of events, hopefully slowing or stopping the growth of the cell.  The good thing about it is that it only goes after cancer cells.  Trent's bone marrow, hair, and gastric system will be spared the horrible side effects of traditional chemotherapy.  They are seeing good results with this drug against sarcoma.  The delivery is four oral pills each day, indefinitely.  If it works, Trent could live on this drug the rest of his life.  The side effects are minimal, he may have an upset stomach and fatigue.  Of course there is the mile long list of possible side effects that every drug has, but those are not likely to happen.

Dr. Gouw also discussed putting Trent on a Phase I clinical trial drug called Lapatinib.  It is a new breast cancer drug that may improve the effectiveness of Pazopanib.  We are going to start the first drug and possibly add in the second drug down the road a little bit.  Our insurance company will only pay for Pazopanib if it is done through mail order so it will be about a week before he can start it.  We will check his labs one week after he starts the medication, see Dr. Gouw two weeks after, then scan again in two months.

Dr. Gouw also told us that there is a possibility of doing an ablation down the road if needed.  For example, if the tumors in Trent's lungs were to respond well and maybe just one or two remained, they could insert a needle into Trent's lung and cauterize the tumor(s).  We could also be put on any number of a handful of different clinical trials if need be.  It was good to hear that at least we still had a few options.  Dr. Gouw said he was sure we would go forth with our good attitude and we would all hope for the best.

When we left, Trent was trying to process everything he heard.  I asked him if he would be okay with never getting rid of cancer, just managing it for the rest of his life.  He was a little bugged by that thought.  It doesn't really give closure to anything and in his mind, he is still existing between to worlds, not dead but not healthy.
I am anxious to see how he responds to this drug and what the side effects do to him.  We are very hopeful Pazopanib will work and give Trent the quality of life that he needs.  

After I wrote the last post I got all the tears out and tried to put on my happy face.  I was feeling excited to hear what the doctors had come up with for Trent.  I kept having this thought that the chemo would be in pill form and that Trent would have little to no side effects.  In  my mind I saw myself dumping little blue pills into Trent's pill box.  So when we talked to Dr. Gouw, everything he said felt right.  Now I can't wait to see what color those pills are!