Wednesday, January 7, 2015

Living with Cancer

The Friday before Christmas, Jennifer and I were at my oncologist's office getting the results of my most recent PET and MRI scans. I was most anxious about my MRI because I had recently had another round of radiosurgery and I was wondering how it worked out.

Turns out the spots on my brain were stable, so that was good.

The bad news came with the PET scan. A spot had lit up on my C2 vertebra. This meant that the drug I have been on for over 2 and a half years was starting to fail. It also meant we needed to start looking at new options.

So my doc met with the radiation oncologist that I have worked with before. This doctor did not want to do radiation because the machines here in Beloit were not detailed enough to do what he wanted them to do - so I was sent to UW for a second opinion and to talk options.

But I had to wait three weeks for the appointment. Normally I am good at waiting, but this time, knowing that the drug was failing, I was anxious.

Today Jennifer and I went up and met with 5 doctors over a 2 hour period. First the radiation oncologist and his resident met with us, then the radiation oncologist met with the medical oncologist and his 2 residents.

Lots of docs in one place.

Initially the radiation oncologist was prepared to do pinpoint radiation to the spot. He knew that I had radiation done to it before, but thought it was doable to have three high-dose sessions to that spot without many side effects.

Then he went and met with the other docs, came back in, and had changed his mind.

Because of the location of this spot, the danger of too high a dose or it getting into the spinal cord are high. If that were to happen, there is a decent chance I could be paralyzed or even die because of the radiation.

So radiation was moved to a last resort.

The other docs then started talking about systemic treatments - new drugs. There are a few new drugs out to treat this type of cancer, and a number in trials - all which is really good news for me.

The doc also said that if I had come to him with this 5 years ago I probably would have died by now. Treatments for this type of cancer are growing rapidly, so I just need to be able to jump from drug to drug for as long as I can.


When it comes to trials I may not be eligible. Because of my Myasthenia Gravis, I may not qualify for trials. Also, if some of the new drugs are immunotherapies, which many are going that way, they may not be options for me because of the MG.

Also, they want me to stay on this drug for as long as I can. Even though this drug is failing they want me to stay on it, because the longer I am on it, the more likelihood more drugs will be developed and more options I will have.

The average person on Xalkori (the drug I am on) has it work for about 11 months. I have been on this for over 2 and a half years. I have gotten good results with it and I am hopeful I will have good results with the next drug.

But I have to wait. And this is hard for me.

I was ready to move to the next drug right now. I was mentally prepared for next step. But now I have to wait for this drug to fail even more, and that is not an easy place for me to be.

The doctor was quite clear - he expected this drug to fail for me in the next 3 to 9 months. I will get a PET scan in three months, and if it is the same I will stay on this drug, if it is worse, there are new spots, or if I have symptoms, then we will move to another drug.

Preparing myself mentally for a drug to fail, and knowing that I am living with active cancer in my body - is a hard pill to swallow.

Back when the spots first appeared in my bones, two plus years ago, the doctor told me that there was no cure for my cancer - all we could do was prolong life.  I knew this, I know this, but I keep looking at all the new treatments that are coming and the possibilities that come with them, so I am hopeful.

But to wait to move to the next treatment so that my medication can fail more - tough mental shift to make.

So as I drove home I started to think about all of this.

- I have a great family I love to spend time with, who make me laugh, and I enjoy being with as much as possible.
- I have a great job and work with wonderful people.
- I know I have good friends and  people who care for me, love me, and pray for me all the time - I am very grateful for all of you
- I have no symptoms right now - so I need to continue to get out and enjoy all of the blessings of this great gift of life
- There are new treatment possibilities - there may not be a cure, yet, but there are treatments and eventually I will get on a new one that will work for awhile
- I know there will be dark and depressing and even painful times in the future, but those times will not dictate the rest of my life - there are too many blessings. Light truly does shatter darkness

So I will keep living in this waiting time, seeing how long the drug works but not dwelling on it. I have a great life to live, and I won't let this cancer crap get in my way.

Thank you for all your prayers and support. I hope to write more on here in the future - and not always about medical stuff :)

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