Back from my break from cancer and the boards

OK - I always write long posts, and this one will be no exception. If you are a stage IV CRC patient, please stick it out and read through to the end. (If you have port troubles you may want to read further also.) For the rest of you, if you are bored to tears, you can quit early!

After over 2 years of chemo, I just couldn't deal with it anymore. I was really run down. I pushed for SBRT, but one of my 4 tumors disqualified me. I was able to do daily radiation. So after 2 months of daily radiation, I got a break from all treatments. My CEA raised slightly during radiation, but started dropping a little by the time it finished. It was 5.7 at the end of radation. It was expected to be elevated due to the radiation. I couldn't have a scan for at least 6 weeks after finishing, or they would likely get a false positive.

So I took 7 weeks off! I went to my island in Mexico with my husband for 10 days as soon as I finished. I regained a lot of strength while there. We came home for the holidays, and I had a treatment free holiday season after having really rough ones the last two years. Then I took off backpacking Mexico with my daughters for 3 weeks. I took full advantage of my treatment break and got out and LIVED! I can't begin to explain how wonderful those 7 weeks were!

Last week I had my labs and CT scan. I normally have PET/CT, but even 7 weeks out a PET can give false positives, so I just had a CT. Two different nurses could not get my port to work for the CT. They had a lot of resistance, and I had a lot of pain, so they didn't think the needle placement was correct, and thought the port had twisted. My labs came back with my CEA dropping to 5. That is still higher than normal for me when I have no cancer, but it is dropping, so that is considered stable. My CT came back clear! The only large spot was one of the tumors just treated with radiation. But most likely it is scar tissue causing it to be a bit bigger than "normal" lymph nodes. It is only 1cm so we are not worried and assume it is scar tissue. So my treatment break is prolonged! Right now I am NED!

There is always a "but" when it comes to me. I tried to have the chemo nurses flush my port, but two of them had the same problems the CT nurses had. One noticed that my chest was very puffy around my collarbone too. I was sent for a dye study. I had a big hole in the catheter. The pain has been from the saline and/or dye being forced into my chest tissue. I had complained to my oncologist about this pain towards the end of my chemo and he thought it was scar tissue from port placement or something else not to worry about. We had trouble getting blood return from my port and it couldn't be used for labs. But we could get a tiny bit of return - enough to keep using it. I noticed the first time I had to get my port flushed that I felt a popping sensation and then some pain, which subsided over time. And we could only get a drop of blood return. The same thing happened the next time. But now it was much worse giving a lot of resistance to anything going in, and no blood return. I think I had a tiny hole quite a while ago, and it just got bigger and bigger. When I was sent to the cath lab for the dye study the pain was awful. After bing pushed on and poked multiple times two days apart, and having many 1/2 vials of saline forced into my chest, and then having the dye forced in, it was miserable. They said the hole was large and the port needed to come out within the next week. They were worried it could deteriorate further and cause more trouble. So yesterday I got my port out.

This was my 3rd port and I intended on keeping this one a long time. I've had a lot of trouble with ports - first one going in got infected - second one coming out got infected - third one going in punctured my lung. Now the 3rd one had to come out because of a hole. I'm jinxed when it comes to ports. BUT the good news is I do not need a port right now! WOOOHOOOO! If new tumors pop up, I will first push for radiation or surgery. Chemo is a last resort for me because I really don't tolerate it well. If I need chemo again, I'll get a new port then.

For anyone told they are on chemo for life (I was), or they can't have surgery or radation, please remember that only applies to that moment in time. Things can change. Be an advocate for yourself! Even though I have a highly respected oncologist, his thing is chemo. Chemo was keeping my cancer under control, so we continued with it. When I first had to return to chemo after a short break, I had tumors that were in an area that disqualified me from surgery or radiation. A second opinion from the Duke Tumor Board said, chemo only - the same as my oncologist said. I was told I would be on chemo for life, and not to expect to ever be fully cancer free. With multiple distant nodes involved, cancer was circulating in my entire body. I was the one that had enough and pushed for something different. Once presented with my ideas, my oncologist agreed that it was worth a shot. I had stubborn tumors that kept shrinking with chemo, but poppedright back up again when chemo was stopped. Now they have been taken out by radiation! Please don't give up, and be an advocate for yourself. Educate yourself on all options. Get a second opinion if you aren't comfortable with your treatment plan. Remember to reassess your plan once in a while.

I don't expect to be cured, but I'll take any period of NED I can get, with the wonderful breaks from treatment to LIVE and have quality of life again!

Colon Cancer Dx AUG09 Age 47
Sigmoid resect 5/17 nodes + Staging indeterminate
FOLFOX OCT09, NED MAY10
Stage IV confirmed AUG10 - FOLFIRI & Avastin
Radiation OCT & NOV11
NED JAN12 - treatment break!
http://www.caringbridge.org/visit/kathrynblume