Steve had a neck CT scan on Wednesday. He usually has 2 separate CT scans because the chest CT scan does not get quite high enough to get his clavicular lymph node clearly. We had to be at the hospital at 6:00am this day (fun fun). We had the kids spend the night with my mom and we got a room close to the hospital so we didnt have to get up at 4:30am to make it in time! We also got to meet some good friends for dinner on Tuesday night. They live over an hour from us, so we were kinda in middle ground and took advantage of it. We had a great time.
|Our welcome gift at the hotel.|
|Dinner with GREAT friends.|
On Thursday, we had to be back at MDA at 7:45 am for Steve's chest CT scan. It would be nice if 7:45 am meant that was the start time. Unfortunately; between paperwork, waiting, Steve drinking the barium drink, etc. he didn't actually go back until about 9:45. He finished up about 10:45 and we headed over to the melanoma waiting room to catch up with a friend who was waiting to be seen and her husband. I hate to see her in so much pain, but we did have a fun 30 or 40 minute visit. After our visit we headed down to have lunch in the cafeteria before Steve's 12:15 appointment with his doctor to go over his CT scans.
We got back up to the melanoma waiting area right at 12:15 pm. They have a board that tells whether the doctor is on time, or how long they are behind. When we had left to go downstairs for lunch 45 minutes earlier for lunch, it was "on time". When we got back the board said "1 hour 30 minute" behind. We expect this to happen sometimes. The way we look at it is our nurse, PA, and doctor all give us every bit of time that we need. I read about melanoma several hours a day, so I am always armed with a million questions for Dr. Kim. Dr. Kim is always patient and takes his time to thoroughly answer my questions. I am sure he does the same for all of his patients, so it does not surprise me to see when he is behind (although I am sure there are also a million other reasons they can get behind). Luckily, it only took about 45 minutes to get back, so it was not too bad.
Dr. Kim went over Steve's CT scans and lab work with us. His lab work looked pretty good, but his platelets were lowered a little. He was not too worried about this because the CT scan showed that Steve's spleen was still enlarged from his recent viral infection. The enlarged spleen will soak up the platelets and cause them to appear low. The CT scans showed that the clavicular lymph node had increased in size. It went from 2.0 cm x 1.8 cm to 2.7 cm x 2.5 cm. The pulmonary nodule that we were not sure was melanoma or not had increased in size therefore confirming that it is almost definitely melanoma also. That spot had increased from 5mm to 9mm. He also has a few small jugular lymph nodes that are very small but have increased in size. I am not sure of the measurements of those. They were very small though. We thought these jugular nodes were new, but apparently we just overlooked these on the original scan and they had never changed size.
We were not surprised by the growth of the lymph node/pulmonary nodule. He had not been on any treatment for over 2 weeks and we could feel the lymph node growing. We were crossing our fingers for nothing new on the scans, and there wasn't. So, that was the best news we could get!
After discussing the scans we moved on to discussing treatment. We already knew he would be starting Ipilimumab/Yervoy (an immunotherapy) and Dr. Kim ad discussed starting Temodar (a chemo) along with the Yervoy. Steven and I had went back and forth on trying to decide whether or not to use the Temodar with the Yervoy. Dr. Kim said that in a very small study it had shown to have better results than Yervoy alone. One might assume that would make us automatically agree to the Temodar. We still were not 100% sold. Chemo is not good for your body. Yervoy is an immunotherapy. It is used to make your immune system stronger to hopefully have your body fight the melanoma on its own. Chemo weakens your body and kills cells. Temodar also crosses the blood brain barrier (meaning it will reach the brain unlike many other drugs). Steve does not have brain tumors and never has. Dr. Kim also said that the Temodar would not prevent the melanoma from spreading to the brain. This kind of made the decision a little (and only a little) easier for us. If the Temodar crosses into the brain, it could kill some of Steve's brain cells. For such a small increase in results and only in a very small sample of people, it just did not seem like the right path to go down. Also, Temodar messes with your blood counts and Steve already has lowered platelets.
Dr. Kim agreed that these were all valid concerns and said he would leave it up to us if we wanted to add Temodar in the next round. After we finished up with Dr. Kim, we headed down to the infusion center for Steve to get his first dose of Yervoy. We got into an infusion room around 4:30. After getting hooked up to the IV, pre meds, more paperwork, the actual 90 minute infusion, and observation time after the infusion, we did not get out of the hospital till around 7:30 pm. It was definitely a long 12 hour day at MD Anderson.
|Steve getting ready for round 1 of Yervoy.|
|Getting the IV.|
|Yervoy is running!|
Yervoy works slowly, since it is an immunotherapy. The Yervoy can inflame things and make things worse before they get better. The thoughts are that the responders will have a long term response to this treatment. I asked Dr. Kim what happens if he is a responder? Dr. Kim says he will just get scans every 3 months. If he is not a responder, we will have to figure out what approach we want to take next. It will be a lonnnng 4 months until treatment is complete and we have scans that show whether or not he is responding to the treatment.
On January 3, 2012 Steve had the biospy which confirmed metastatic melanoma which was later to be determined to be stage 4. Survival rates for stage 4 melanoma are grim. We have had our fair share of ups and downs this past year. But one year later (almost), Steve is still here. He is doing fine and he is still only battling his original spots of melanoma. Nothing new in a year! We will take it!
We would like to wish everyone a very Merry Christmas and Happy New Year!