The doctors found the first tumor after my hysterectomy. It was a huge unpleasant surprise. The good news was that the tumor was already out of me, and that there was no sign of additional cancer anywhere. No Evidence of Disease! NED!
February to June 2007
I had a Bard Power Port installed for chemo (which has made chemo a lot easier to deal with). I had 6 cycles of Gem/Tax chemo just in case there were cancer cells floating around. Then we monitored with a chest xray every three months.
The news was great for quite awhile... NED!
A regular chest xray showed some spots in my lungs. (This type of cancer, if it comes back, usually comes back in the lungs.)
That's when this blog started, so I could keep eveyone informed about what was happening.
For about eight weeks, there was a lot of chaos as each scan revealed more metastacized cancer and I was told that I could not have surgery.
I had fabulous CyberKnife radiation at UNC to attack the tumor in my psoas muscle.
July through October 2009
I switched to Duke and had another 6 cycles of Gem/Tax chemo, which totally kicked my butt by the end. The great news was that all the tumors shrank significantly. (None disappeared.)
November 2009 to May 2010
I participated in a clinical trial at Duke for sarcoma patients who had metastacized sarcoma that had responded well to chemo. The drug was an experimental maintenance drug that was supposed to keep the tumors from growing. Because it was a double-blind randomized study, I could not be sure I was getting the drug (not a placebo). But I had side effects that made me sure that I was getting the drug, which made me very happy. IThe side effects were dramatically increased triglycerides, nail progems, and diabetes.) It seemed to work for a wonderful six months, then I had a little bit of growth and got kicked off the study. Bummer. But the diabetes went away, which was wonderful.
I started Doxorubicin (brand name Adriamycin) on June 2.
I had a CT Scan after three doses (August), which showed mixed results: some things shrank, some things grew, but no new tumors appeared. We decided to keep going because we did not want to give up too soon on Doxorubicin. I am hoping that the growth occurred between the clinical trial drug and the start of Doxorubicin, and that the shrinkage occurred once the Doxorubicin started.
I got my sixth and final dose of Doxorubicin on September 15. The CT Scan in October showed shrinkage, so no chemo for another two months. The CT Scan in December looked okay, so no chemo for another two months.
Starting in January I started to feel serious discomfort in three spots in my chest area. The February CT Scan showed significant growth in (you guessed it) three spots in my lungs, so it was time for chemo. We chose six cycles of Ifosfamide because it was the more difficult of the next two obvious choices. Each cycle of Ifosfamide requires a three-day hospital stay. It seemed prudent to tackle the more difficult chemo now because I am in really good shape after five months chemo-free.
It went well. Some tumors shrank, and some tumors just stopped growing, which was good enough.
Great news! I met with a radiologist at Duke who performs radiofrequency ablation and cryoablation to zap tumors in lungs. Turns out that I would be a good candidate for cryoablation. Freeze those tumors! Kill them!
We're going to give me some time to bounce back from chemo before we try cryoablation.
I have been in serious discomfort for over a month, on and off, but easily controlled with Advil... and so the CT Scan just showed that everything grew. So it's time to start chemo.
It took awhile to get the insurance company to agree to pay approximately $5000 per month, but I finally started pazopanib (Votrient) pills mailed to my house. It was supposed to inhibit the formation of blood vessels and therefore choke off the tumors. But after two months, a CT Scan showed that everything grew again. Darn darn darn. So, it's time to start another chemo.
I had three options, and I chose the one that Dr R thought was exciting. It's a Phase I Clinical Trial at Duke to test three drugs together, but I am getting only two drugs together. There are some unpleasant requirements for this clinical trial, like multiple skin biopsies and tumor biopsies, but I am going ahead anyway.