Tuesday, July 17, 2012


If you've had them you'd shudder at that word. The word means "pain".
It all started last week, probably early in the week, when I felt a slight pain behind my left ear, like the frame of my eye glasses was putting pressure on me. Then on Thursday evening I noticed an ear ache, in my middle ear. I had no congestion and I wondered where an earache could come from. I even thought maybe there was a lymph node putting pressure on my ear. When you have cancer you think like that. By Friday the ear pain was throbbing, coming in spurts now and then. I took a decongestant and some ibuprofen to ease the pain. It didn't really help. On Saturday I noticed a few bites on my neck but didn't remember being bitten. They were extremely itchy and when I touched them they oozed clear pus. By Sunday the rash was in front of and behind my left ear, and by that evening it was all the way to the back of my neck into my hairline. We were home from the lake by then so I put it out on the Sarcoma Website to get everyone's opinion. Three people immediately responded "Shingles". I Googled it and after some research thought they were right. Monday morning I got into the dermatologist who confirmed the rash and told me what to expect and handed me 3 prescriptions. I called my Oncologist who said to stop the chemo this week and just come in for blood work on Thursday. By that afternoon the nerve pain was coming fast and furious. Like no pain I've ever experienced. When I move my head or neck I get a shooting tingly nerve pain that radiates through my whole neck. OUCH!
Another side effect from cancer. I got this now because I am immunodeficient from taking chemo. 
This has got to be the worst side effect yet. 

Friday, July 6, 2012

Sarcoma treatment update

I haven't posted on Sarcoma since my last post in April on my five year anniversary. In March I had come to a conclusion. My current Oncologist had come to the end of his expertise for my unique cancer. He was in touch with the Doctors at Dana Farber over my treatment, but they were still not sure about what chemo to try. I decided to go to Emory and meet with their new Sarcoma specialist, Dr. Movva. Our first meeting, she presented me with a research paper about my exact cancer and the drug combo they were using to fight lung mets. She wanted to use these drugs on me and she had a reason why. I liked that right off the start! So, I switched Oncologists and we started a new chemo protocol in March. I take Temodar pills, 200mg for 7 days and on the 8th day have an infusion of Avastin. Then I get a week off the drugs and start again. I've been doing this since March 8th. I had a PET scan on April 30th that showed shrinkage of the previously growing nodules. It was minimal shrinkage, but most of all hope! So we continued the protocol for 2 more months. After 4 months on the drugs I had another PET scan. The nodules were basically the same size as on 4/30, no shrinkage or growth. I was disappointed in this. I wanted my wonder drugs to attack and kill those nodules down to nothingness! But the good news is I was stable. "Stable" but unstable emotionally because now I had to think further down the road to the next treatment. We are doing the drugs for 2 more months, through the end of August and we'll scan again and assess. If still stable I may get a break to see what happens on nothing. We'll see. That's the hard part, the unknown...