Brain Mets and Whole Brain Radiation: Guidance/ Advice Needed

unknown said:

This comment has been removed by the Moderator

cher76 said:

My husband, Rickie, was
My husband, Rickie, was diagnosed with stage IV EC in Oct. 2010. at the time it had spread to his lymph nodes and spine. He underwent treatment at MD Anderson in Houston. If you click on my name you can read our story on the "about me" page. When he was diagnosed he was at the point that he could barely eat anything solid, and had already lost almost 60 lbs! Thank goodness for small blessings as he weighed about 275 at the beginning of 2010. I sometimes think that without that extra weight he would have been gone much sooner. By the time he passed on Jan. 4, 2012, he probably only weighed about 130 lbs. You see, my husband was a very determined man, who felt he had much to live for and never would consider giving up and not seeking any more treatment. He never complained, no matter how bad his pain or the treatments were. He would tell everyone his prognosis was incurable and inoperable, and he was just looking for more time to spend with us. He was 55 when he passed and left behind myself, his wife of 35 years, 3 wonderful children (a son, and two daughters) and two adorable granddaughters whom he so desperately loved and wanted to be here for. He started with chemo in Novermer of 2010, moved on to a clinical trial that involved a placebo ( which we are pretty sure he got), then started on Erbitux and Irinotechan in March 2011. During this time the tumors in his esophagus shrank quite a bit and he was able to eat better. He had a wonderful report in May that showed many places in the spine were clear as well as the esophagus. He went every 3 months for a CT scan, and I must say they never did a whole body scan at those times. During the spring he had complications from diaherra from the chemo and lots 20 lbs in less than a week. In May a feeding tube was inserted, though he did not use it frequently, only when it was convenient. He loved to eat and watched the food channel for hours on end! In the summer he underwent an esophageal stretch here at home in the hopes of being better able to get solid food down. He developed some interval bleeding from that and ended up in the hospital for a week. Our visit to MD Anderson in August showed that the cancer was stable, but when we returned in October, it was on the move again. It was determined that the erbitux and Irinotechan were no longer working and the oncologist told us he could do no more for us. He suggested we see the doctor in the Targeted Therapy Center, which we did and he gave us a plan of action with some new drugs. We returned home to await the insurance approval and get some times in order. The day we left Houston, Rickie began having trouble with his right foot and hand. He told me he thought he had had a stroke. I wanted to go back to the hospital, but he wanted to go home. I think he knew, and did not want to end up hospitalized up there. So I drove him 6 hours home, praying the whole way. Monday we went to our local oncologist who admitted him to the hospital and ordered a brain scan. The news was devastating. The radiologist told me as well as showed me the scan and said that Rickie had hundreds of legions throughout his brain, too many to count really, but that only a small portion were active, those being in the left frontal lobe, thus causing the trouble with his right motor skills. The dr. Likened it to a party with many guests standing around the dance floor watching only a few dancing. He said it would probably only be a matter of time before they all joined in. He recommended 10 brain radiation treatments. I had read a few things here on CSN and they did not sound good, but Rickie wanted to give it a try. He had set a goal of living through Christmas because we would have everyone home, so he wanted to make that happen. He was released from the hospital on Saturday and had his first treatment on Sunday. During that time he had little side effects, and he actually improved quite a bit. We he was released from the hospital he had to use a walker to get around, but by the end of the treatments he was getting around almost totally by himself. He continued to improve, but then had a set back when he began bleeding internally from his esophagus and stomach. That was another hospital stay, and we came home with hospice just before Thanksgiving. All this time his motor skills improved and when we went in for an appointment in early December he told the doctors he was planning on returning to MDAnderson right after the holidays to seek treatment with targeted therapy. The brain radiation had seemed to work and there were no signs of it changing his personality. A brain scan was scheduled for the middle of December, just before Christmas, to see how things were going. His motor skills continued to improve but his legs began swelling and his left arm was going numb. The doctors could not really figure out what was going on. Soon hide arms began swelling too. As I researched I began to think it may have been side effects from the radiation. I really believe now that there were little things going on that he noticed but did not want to let on to. When it came time for the brain scan he decided he did not want to go. I think now he wanted to spare us all that during the Christmas holidays. He started sleeping more, and his hands and legs were greatly swollen. Still he was determined to get around and help. I guess I really noticed things were not going well when he was carrying the butter dish from the table into the kitchen and it just slipped from his hand. From then on his grip became looser and he seemed to have little strength in his hands. He was on pain meds ( methadone and dilaudid) every hour, for the extreme pain in his back. Always it was only in one area, just a little out from his spine between his shoulder blades, and he said it just felt like extreme pressure. This is where I felt like hospice failed us, as they would not change out his meds to something different, and left all the administration of it to me. They never had anyone available to help me through the nights, and so I had little sleep. He was totally on his feeding tube, and any of the meds had to be crushed and put into the tube. On night I remember especially he needed his pain medication, and I got up to fix it and was sitting at the table trying to measure it out and falling asleep right there. I told him I had to wake up a little more before I could do it. I literary could not see straight! When I told hospice I needed help with this they said they would try to help me find someone i could hire to come in at nights. That never happened. We made it through Christmas, but Rickie slept most of the day. Then on the 27 th his dad passed away from complications from Alzheimer's . He had just celebrated his 90 th birthday. I dreaded telling Rickie, but he took it pretty well. He seemed to be having some anxiety the night before the funeral and I gave him some lorazepam at about 5:00 am. That as a mistake as we barely got him to the funeral. We buried his dad on New Year's Eve. I really started noticing things in the days that followed that. He would get words mixed up and syllables would come out turned around. The brain is truely an amazing thing, with it's ability to put sounds and syllables and meanings together. I felt at that time we were really getting a glimpse of how it could go haywire. At one point I felt that I had had my last real conversation with him other than for his immediate needs, but then he would seem to be fine again. We noticed a large lump appear in his neck, and assumed it was probably the cancer spreading to his thyroid gland. Between the holidays and his dad passing, we didn't get into the doctors about it. The girls went back home to Dallas, and things were calming down at the house. He did not want to lie in bed, preferring his recliner, but didn't want to keep his feet up either. His feet and legs continued to swell, and so hospice suggested that he take some lorazepam to relax him. When that didn't work them gave him hapodal and he went to sleep and never woke up again. I called for the girls to return the day after they got home to Dallas. He died on January 4, one week exactly after his dad passed away . I guess this has gotten rather long, and maybe some do not wan to know how it ends, but I know when I would read the postings I always wondered how the end might come and no one ever seemed willing to spell it out. I know it is different for everyone, but Rickie died peacefully with all of his family by his side. I do not feel the brain radiation hurt him, in fact I believed it allowed him to get through Christmas which he so desperately wanted. So everyone' situation is different, and I believe you have to make those decisions for yourself. I can only share our own experience. Rickie was willing to try anything if it would give him one more day with us. He loved us so, and wanted to be here with us. He worried so much about me and how I would get on. I know he is with us always, watching down from heaven, and we will meet again one day.