Results and Prognosis

All of our appointments on Monday went well, we got all the information that is available and we know now what we're heading into. It was not what we have been praying for, and I've had to take some time to just absorb it all. So much has changed, and everything about our day to day is changing with it. I have all the facts, I'm just running a little bit slow on figuring out how to make all the necessary adjustments.

Ryan's cancer is stage 4. His entire abdomen is infected with the cancer cells, and they are at a very accelerated rate of growth. Because this is a completely different class of cancer than normal carcinomas, it cannot be treated by normal means. Traditional chemotherapy and radiation have no effect on it, which means there is no way to kill it off or rid his body of it. He will never be in remission, the cancer will always be present and active.

Because treatment options are obviously very limited, what is available are "targeted" treatments, which means they are designed to target certain enzymes within the cancer cells, in an attempt to block their ability to multiply. These are not chemotherapy in the traditional sense, but are still chemopathic drugs, as all chemotherapy is designed to either kill or regulate growth of cancer cells. There are two such drugs out right now, Gleevec and Sutent. Gleevec is the first choice, and it is what Ryan has been prescribed, 400mg daily.

The goal in treatment for us is to hold off the growth of the cancer for as long as possible. In time, despite all efforts, it will begin to grow again. There is no preventing it, that is just what this cancer does. There are a lot of variables along the way-- the Gleevec can be adjusted in dose when what he is currently on stops being effective. When the cancer grows completely resistant to the Gleevec, he can be put on the Sutent. When it grows resistant to the Sutent, all we have right now are prayers that there will be another treatment available by then.

Surgery is always an option for Ryan as well. Right now the cancer cells are all over his abdomen, but everything big enough to be removed has been. In time as it starts to grow in mass size again, he will have surgery to remove the tumors the same as he had last month. I'm going to continue to pray like a crazy woman that it doesn't come to that too many times. What he went through on Easter was so completely invasive--the surgeon literally lifted and moved his organs around while he washed the entire abdomen area down with over 2 liters of saline, striving to make sure he wasn't missing any other growths. I've never seen someone in that much pain, and there is no part of me that ever wants to see Ryan go through anything like that again.

So to sum up the treatment plan, what happens now is that Ryan will begin the chemo hopefully this Friday. (We had to wait for insurance to approve the prescription, and now a speciality pharmacy has to fill it and ship it to us, I guess because it is a controlled substance, and because it costs a ridiculous $9,700 per month. My thoughts on pharmaceutical companies are pretty ugly right now, which is a whole 'nother post, but I am most assuredly thanking God for our insurance!!!) It is in pill form, which Ryan will take daily, along with a slew of other supplements and vitamins. The Gleevec will suppress his immune system, so all the extra stuff is geared toward boosting it as much as possible. Any fever of 100.8 and up will mean a trip to the doctor, because catching any developing illness early is critical since his immune system will be down.

The chemo can affect his liver and kidneys, so he has to go for blood work once every week to monitor that. He will go to CTCA once every month, where he will meet with all his doctors on his care team and get an exam, and more blood work. The blood work done at CTCA will be more in depth, and in particular will monitor his blood for something that will spike when the cancer begins to grow again. It will just be a heads up to the doctors when the chemo begins to fail. Once every 3 months, while at CTCA, he will get a scan or a series of scans done-so they can visually track what the cancer cells are doing.

We were given an entire book of possible side effects from the Gleevec. No way to know which ones he will experience or how severely until he starts taking it. No way to know if he can return to work until we know how he is going to handle the chemo.

My main question at the end of all our meetings was naturally about Ryan's over all prognosis. The problem is that GIST cancer is so case-specific that she couldn't give me a definite answer. Everything from this point forward depends on how his cancer reacts to the treatments that are available. The treatments that are available to him depend on what his body can handle. Again, we have no way of knowing any of that yet. I specifically asked if this was something that we could just treat for the rest of his life, allowing him to live a normal length of time. In my mind I was thinking maybe it's like diabetes or something similar, you just treat it and handle complications as they arise and go on with your life. She was very honest and said no. No he will not live a full length of life. No we do not have the lifetime ahead of us that we thought we did. And no, there is no way to know exactly how much time we have.

It's a lot to absorb, a lot to adjust too, and I'm still working on that. Ryan is too. I have to be honest and say that I've lost myself a bit at this point. I'm sure I'll find my way again, and I will make certain Ryan finds his own solid ground to stand on again. But right now I'm just not certain of anything about anything, and life feels inexplicably heavy. I don't know what to do, how to work through this...how to find the light and laughter and joy that I've always relied on in my life... One day at a time is where my head is at. For today I've finally gotten this update done. For today I'm going to hop on the treadmill and then clean the house and then make something for dinner. For today I'm going to watch Ryan every chance I get. I want to see his smile, hear his voice, breath in his scent, feel him in my arms, kiss his cheek, rub his hair at the back of his head....I need to just feel him here beside me, in the car or the house or the yard. Just here. I don't know if that makes sense...I just know it's what I need today.