We met with Jared's radiation oncologist today. It's ironic and was quite humbling to realize that we were meeting at the exact office I bring my mom to for her radiation oncologist. But I won't get into that feeling this morning.
While we were waiting to be called back, the receptionist came over and informed us that we were to meet his oncologist upstairs at 12:40, after meeting with this first doctor. Looked to be a long visit at the hospital today.
The visit with the radiation oncologist went well. He told us that the biopsy Jared had on the 10th showed this to be a Desmoid tumor, but a few of the cells were actually staining to show a GIST tumor. Crazy, but they are still thinking this to be a desmoid. The first option to treat this is surgery, but he's already had that and it proved to be non-resectable. The second is radiation. This can cause a lot of side effects, which include diaherra, pain and inflammation in the intestines, and scar tissue that can make a surgery down the road more difficult, so really, we don't want to do surgery yet. The third is the chemo pill. At first they wanted Jared to participate in a study for this, but with finding that some cells showed this to be a GIST, there is another form of chemo pill that actually will treat both a Desmoid and a GIST. So this is the first step in fighting this, and then if radiation is needed down the road, that is an option. Radiation has proven effective in shrinking these, but with the location of Jared's, there are just too many side effects to jump in as the first type of treatment. He looked at Jared's scar and was surprised at how big it was, how raised, and how hard it was. He was wondering if Jared has some sort of gene that makes it to where his body scares a lot. Desmoids are like a scar tissue tumor. They grow in the tissues that make ligaments and tendons and are really a bunch of scar tissue that just keeps multiplying. He said if Jared has this, it would explain the desmoid tumor, but after looking at some other scares Jared has, he's not sold on that idea. Jared has to have a colonoscopy and some genetic testing to look for Gardner's syndrome, which is linked to colon cancer. His tumor is connected some to his large intestine, so they want to rule this out. Plus, we need to know if they should be watching Jared closely for colon cancer and if our boys are at risk for this. All this should take place over the next few weeks.
We met with Dr. Nibbley afterwards. We talked more in detail about this type of tumor. There are really no side effects with these two types. He said the anxiety Jared had a couple years ago that lasted about 6 months could be related, but there are no known relations that he knows of. He said tumors can do weird things, so it might be from that but we'll never know. He said they are for sure doing the chemo pill that is called Glevo. They'll watch Jared real close at first with blood tests to make sure his liver and kidneys can handle this, but usually the side effects are minimal. He said side effects are usually muscle aches and you might feel a little blah. People get used to it, and it's usually when they go off the pill, that they realize they do feel better without it. He said this is a type of pill that, if it works, he can stay on it as long as he needs to. This type of pill is also used to treat a type of leukemia. There's someone who has been on this pill since it came out 12 1/2 years ago and it's still working for her. That was very hopeful to hear! This treatment is one pill a day, but costs around $2,000 a month. Their office is checking with our ins. to see what our copay will be, and if it's still high, they'll figure ways to help get it down. We should be looking at getting his first prescription filled and him starting it in about a week. We are finally to this point!!!!!!! Doc said he knows it might seem like we've waisted a lot of time and have to back track now trying to make up for time lost without treatments, but with this type of tumor, it doesn't matter. This pill would take care of whatever might have grown in the last few months. We weren't worried about that at all, but I know some others have been. He said it looks as though this tumor has grown a little since his first original Ct scan back on Sept. 24th, but they think it's because it's inflamed a little and has a small pocket of air inside from the surgery and biopsy. The air should receed on it's own. Jared doesn't have the aggressive type of tumor. His is definitely slow growing!!!
All together we were at the hospital for 3 hours. We spent a lot of time talking to both doctors and having things explained to us more. It was really nice! It's nice to be able to get more answers and have a plan of how to fight this. The doctors are hopeful as well that they will be able to stop this, but even shrink it. I know it has taken a long time to get these answers, but some things just take time. Dr. Nibbley knew this was a slow growing tumor and would tell Jared he wanted him healed from the surgery and sepsis first before he really had to jump into more tests. Plus, today he said that we really didn't loose time with this. It wouldn't have mattered if he'd started treatments now verses a month ago. That was also nice to hear. Doc said it was good we could come in today, otherwise he was going to have us come in on Christmas Eve. I'm glad we got the news today. We are able to celebrate Christmas even more with having our minds at ease much more.
It's so exciting being to this point! I gave him a kiss and hug in the elevator as we left. :)
Jared and I went to Arby's to celebrate. There still aren't a lot of restaurants he can eat yet. Arby's hasn't made him sick yet, so this is one place he likes to go. He got a huge roast beef sandwich and a salad. I got a reg. roast beef, a salad, and small fries that we shared. Jared also drank a few sips of Mountain Dew. This is the first time he's had pop since we were camping. He has to be careful about putting too much air in his bowels from the carbonation. Let's just say it was pretty hard on his system. He could hardly sit still with all the air that built over over a few minutes. But hey, now he's had pop! He's just staying away from it now. :)
We ran errands afterwards to try and finish things up for Christmas. We didn't get home until 3:40ish. For leaving at 10:30, we were a lot longer than expected. I'm running out of time to get ready for Christmas, but that's the least of my worries today. I couldn't stop smiling, I had such a peaceful feeling and still feel like everything will be ok. I'm so thankful to have Jared in my life. He is my bestest friend. I am so in love with that guy.