Mets to brain, any info about whole brain radiation?

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ShootingStar
ShootingStar Member Posts: 15
in Esophageal Cancer #1
My StepDad has EC with mets to lungs, brain and lymphnodes. He did one round of Chemo, wasn't working so Doc put him on Clinical Trial. He then started having right eye swelling with double vision (before starting the Trial). MRI confirmed several spots all over the brain. Doc started him today with 15 minutes of Whole Brain Radiation. He showed signs of improvement right away, swelling went down some and he said his vision was a little better. He has to do 10 treatments then see what the next step is. Anybody have any knowledge on this or going through anything with mets to the brain? He is on so many prayer lists, I just feel kinda lost right now. Thanks for listening.

Jen

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  • Lorie B
    Lorie B Member Posts: 10
    #2
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    mets to brain
    All I can tell you is a woman who is married to a guy that my husband works with had breast cancer, that went to bone. They were able to treat that with herceptin 2. However it did go to the brain. She's had whole head radiation done twice. She's fine. Still going. I think it's been at least 3 years since her last one. The only thing I would suggest if these are small tumors it might be safer to do it with a cyberknife. Only hits the tumors, less radiation to the whole brain.

    Lorie
  • LivingFaith
    LivingFaith Member Posts: 74
    #3
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    brain mets
    My dad EC with mets to the liver, then lungs, and finally brain. He lived exactly 5 months. I'm not trying to take away any hope, but I vow not to ever sugar coat the news of our experience and what I have learned from others.

    Brain mets is more evil than the devil himself! Brain mets stole my "dad" from me. The mets changed who is was, my hero, into an almost child like paranoid person. It started with confusion and adjitation to move on to headaches and full blown delirum. It was scary, heartbreaking and frustrating,for us, his family to witness. Can you only imagine what it must have felt like for him?

    I think you need to ask-What is the purpose of your his treatment? Is this giving him quality of life? There is no cure at stage of his disease. Is this prolonging his life or prolonging the dying process? I have witnessed pure hell and concluded there are things worse then death. My dad has been gone since Christmas time and the journey is still fresh in my mind.

    Please, Please Please. Before it gets too late. Say EVERYTHING you want to say to him now. Write down his thoughts, stories, and words too. You will not get a second chance, no do overs allowed with EC. Also make sure all of the family is on board with his plan of care now while he is able to express his wishes for treatment and after his passes away. That alone is a gift for a grief stricken family. Pray, then pray some more for peace, comfort, and strength.

    Blessings and prayers are sent your way. I'm so sorry another family has to experience this journey, but some beautiful touching moments can be experienced, along the way.

    Deb
  • ShootingStar
    ShootingStar Member Posts: 15
    #4
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    LivingFaith said:

    brain mets
    My dad EC with mets to the liver, then lungs, and finally brain. He lived exactly 5 months. I'm not trying to take away any hope, but I vow not to ever sugar coat the news of our experience and what I have learned from others.

    Brain mets is more evil than the devil himself! Brain mets stole my "dad" from me. The mets changed who is was, my hero, into an almost child like paranoid person. It started with confusion and adjitation to move on to headaches and full blown delirum. It was scary, heartbreaking and frustrating,for us, his family to witness. Can you only imagine what it must have felt like for him?

    I think you need to ask-What is the purpose of your his treatment? Is this giving him quality of life? There is no cure at stage of his disease. Is this prolonging his life or prolonging the dying process? I have witnessed pure hell and concluded there are things worse then death. My dad has been gone since Christmas time and the journey is still fresh in my mind.

    Please, Please Please. Before it gets too late. Say EVERYTHING you want to say to him now. Write down his thoughts, stories, and words too. You will not get a second chance, no do overs allowed with EC. Also make sure all of the family is on board with his plan of care now while he is able to express his wishes for treatment and after his passes away. That alone is a gift for a grief stricken family. Pray, then pray some more for peace, comfort, and strength.

    Blessings and prayers are sent your way. I'm so sorry another family has to experience this journey, but some beautiful touching moments can be experienced, along the way.

    Deb

    Brain Mets
    I sincerely appreciate your honesty. He had a 1cm tumor before the first round of chemo and after the first round it went away. Docs were completely surprised. Then testing was done before the second round and the Docs were not pleased with the overall results so they started him on a Clinical Trial. The day before starting the Trial he noticed right eye swelling and double vision. He didn't tell Mom or the Docs, he was afraid he would not quality for the Trial. MRI revealed a large tumor behind the right ear, causing the Palsy. There are also "spots all over" as Mom put it, one on the left side and several between the lining. They want him to do 10 whole brain radiation treatments and then go back on different chemo. His cancer is very fast growing, just in the 21 days in between chemo the brain mets returned worse, the lymphnode in his neck is getting huge. So far he has had 2 radiation treatments and they saw immediate improvement after the first one. The swelling went down in his eye and his vision improved slightly.

    We do understand there is not a cure, but so far things seem to be helping, that is until another setback. He is still positive, we pray and he is on more prayer chains that could probably circle the planet. He also does Reiki. I work in the medical field so unfortunately I know more than I want sometimes. I know it's inevitable, but on the other hand I truely believe God can perform miracles. I just pray our miracle is that the cancer just disappears. I love him like a Dad! But my biggest fear is losing my Mom after he is gone. She is one hell of a strong woman, but I have seen people pass from sheer grief. I try not to worry about the unknown, one of my favorite sayings is "Worrying is a waste of the imagination."

    I live only 15 minutes away from them so we are very close. As far as his family, his brother comes around, but he has 2 girls, 18 & 22 that are not close with him. He left their mom for my Mom and every since then they don't return calls or try to call. The oldest is in Nursing School at the hospital he goes to and she never took the time to come visit him!!!! It breaks my heart for him, but hey, he's got me right? LOL

    Thanks for the advise and for listening. I have a fabulous close family and great husband, but it is very hard for me to open up to them. It's so nice to talk to those who have walked your path.

    You are also in my thoughts and prayers.

    Jen
  • Unknown
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  • rose20
    rose20 Member Posts: 258
    #6
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    unknown said:

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    I found this site...
    I found this site hope it helps.
    http://www.livingwithbrainmets.org/brain-radiation-treatment.html
  • ShootingStar
    ShootingStar Member Posts: 15
    #7
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    unknown said:

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    William, I truely appreciate
    William, I truely appreciate your words. I somehow feel them, you must have one strong Ora. I do completely understand there is no chance for survival. Docs gave hime 9 months - 2 years & that was in February 2011. I do believe his original Doctor messed up. He either operated too late or should have done some sort of chemo to follow up & more scans earlier. The Oncologist he has now seems to be two steps ahead always. He wants scans more often and is in constant contact as needed with them.

    You are correct on the Reiki, but apparently it can be done across the ocean and countries. And you can do it yourself. His other brother who lives in Germany (forgot to mention him with writing about the Reiki, guess I expected you to know that...sorry) is the one who introduced him to the Reiki Specialist who is in London. As far as what he can do is imagine a white light and basically his happy place to create inner peace.

    Just to clear up about his daughters...This is not a great thing to say about your own Mom, but they cheated for several years. She also cheated on my Dad and I was the one to catch her at the age of 4, so I completely understand how they feel. But I also have to say we now have the best relationship. I do not condone her actions, but she is my Mom and I love her with all my heart!

    He felt it was better to wait for the girls to be a little older when he left. They were 8 & 12, why that age was better? Only he knows the answer to that. He was still there for them as a Dad, but kids are smart and they knew (about the affair). After he left he tried very hard to stay in contact, invite them out to his new home, took them to lunch and dinner several times, then one day it stopped (on the oldests side). He called her the day before her birthday to see what she wanted to do, didn't answer as usual so he left a message. She never called him back and he didn't call her back until the day after her birthday. She didn't answer then and would not return his calls or call him. I have a relationship with the youngest, we talk on facebook, text and she comes out on occassion to visit, but when she stays with her Dad she goes in the back bedroom and doesn't visit at all. I remember being a teenager too, but she could spend 10 minutes atleast hanging out. She doesn't call him very often, but tells me how much she misses him. It is definitely a soap opera.

    I am so scared he is not going to make it very long. After talking to Mom today, there were no improvements from Friday's radiation. My gut tells me it's not good. I don't think the radiation is a good idea, but the tumor behind his ear is large and causing problems with his eye. If it doesn't work he could lose sight. And he has to wait to start chemo after radiation. His cancer is extremely fast growing!!

    Thank you all for your words of wisdom and experience. This road is not one I look forward to traveling. I lost my Grandmother 3 years ago after she went through much suffering over a period of time with different illnesses and it was almost a relief when she passed. With my "Shooting Star" I almost get ill with the thought of losing him and my Mom losing him. They are both so young and just beginning to truely enjoy life. God Bless you all and have a great rest of the weekend.

    Jen
  • lindadanis
    lindadanis Member Posts: 235
    #8
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    Whole brain radiation
    Dear Jen, although we have never spoken before, I have just sat down and read your letter about whole brain radiation. Let me first introduce myself, my name is Linda, my husband, Eddie, was diagnosed with stage four e/c back in october, 2009, right away he was stage four, cancer went to his stomach, pelvis and then eventually to his brain. He did seven months of aggresive chemo which was extremely hard on him as well as us, I have a 22 year old daughter also, who stayed home from college and helped me take care of her dad for almost ll months.
    We had to stop chemo because Ed was then diagnosed with brain mets in June, 2009. He could not stand, his thinking was greatly impaired and his doctor stopped all chemo and suggested whole brain radiation. Looking back, I knew deep in my hear that this would change our worlds as well as Ed's world as he knew it and believe me Jen, it did. We immediately started brain radiation for four weeks, five days a week and right away we knew it was a mistake. He declined rapidly and eventually this brain met took his life on September 25, 2009. He had to sign every paper in the world to get this radiation as I'm sure your loved one did also, they tell you there is a very very slight change that it will resolve the cancer, in fact, we were told by the oncologist radiation doctor that it could give him a stroke, make him worse, etc., etc., but at the time we felt we had no other choice. My sister, who is a registered nurse for 25 years, told me no to have Eddie do radiation, but he wanted to do everything possible. Looking back, I do not think he was in any mental shape to even make that decision. I believe that this tumor was probably there right from the beginning of his diagnosis which was back nine months earlier. The orginal doctor never scanned his head so we don't know when that tumor began, but looking back to how Ed was behaving, I believe he had brain cancer right from the beginning. I wanted to warn you that these doctors are NOT upfront about whole brain radiation. Take it from me, I had to sit back and watch my poor husband go in there everyday and decline everyday to the point that after he finished radiation and they did a scan, the tumor GREW, not shranked at all. I never told Eddie that his tumor grew, I never could look in his eyes and tell him that everything he did was for nothing but deep down I believe he knew this. At the end of the months, my husband became bedridden, so mentally messed up, so weak and so sick. He did have one day two weeks later that we renewed our 25th wedding vows and had a small party.
    From that day on Jen, things were never the same. I wanted to write to you to let you know that whole brain radiation is a big risk, a very big risk and that from what the doctors told me, there was only a 20% chance of it working and it didn't. This cancer is a horrible cancer, especially when you are diagnosed with stage four. I do not write on here much anymore although I do read many stories. If I could go back and change one thing, it would be never to have started brain radiation. I wish we just would of let him with some dignity . At the end, he could barely speak to us and it was very difficult for myself as well as his daughter to watch this decline. I know that my husband was very sick and was probably never going to beat this cancer but the radiation took him earlier I believe.
    If I ever can help you out, please contact me.
    Linda

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