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Brain Mets and Whole Brain Radiation: Guidance/ Advice Needed

Bluestar04
Posts: 8
Joined: Mar 2012

My apologies as a first time poster, I hope this is the right place for this. I am looking for advice/ input/ guidance about whole brain radiation for mets to the brain. My father (stage 4 EC, dx 6/11) has done very well on chemo, except for the fact that it seems to be chasing the cancer up to his brain. He had 2 large tumors removed from 2 different sections of the brain in late November, 2011. In Jan. they put him on a new round of chemo, including the Herceptin he had been on in the previous round, since it had been more than 10 weeks from the end of his first cycle to the new year (the brain tumors were a complete surprise that caused a bump in the road for chemo treatment to start back up as planned). He had a scan last week that shows great improvement in the esophagus, liver, and lymph nodes, but more activity in the brain. Now they are discussing radiation, and my reseach of WBR has me scared, but at this point, it looks like that is the next step. Can anyone tell me about their experience with WBR?

LivingFaith's picture
LivingFaith
Posts: 84
Joined: Jul 2010

I haven't been on the board in months,it became too painful. For some reason I felt the need to check in today and understand why. I read through several posts and had the urge to scream.

Scream because of EC.
Scream because of the stories are alike with different names.
Scream because I miss my dad.
Scream because his journey is over and I want it to mean something.

Then I read this post. William shared some of my words, my Dad's story, to help and bring comfort for another person.

It feels like maybe my posts and Dad's experiences weren't all for nothing. A little piece of his legacy lives on doing what what my dad loved more than anything, helping people.

Thank you. Thank you God for leading me here today. I pray that I can find ways to help others on the EC journey and in life.

Blessings...Deb aka LivingFaith

Ginny_B's picture
Ginny_B
Posts: 537
Joined: Sep 2011

Welcome! I'm sorry you had to find your way to this forum, but glad you did. My SIL had mets to the brain from breast cancer. She went through 10 rounds of WBRT. She suffered neuropathy to her feet and had a hard time walking. Had to use a walker and now uses a cane or my brother's arm. Only 1 small tumor remained (had 9) and they believe it is still shrinking.

The battle continues!

lindadanis
Posts: 267
Joined: Nov 2009

I was reading your post and wanted to talk to you honestly about whole brain radiation. My late husband, whom passed away a little over a year and a half ago went through whole brain radiation for six weeks because he had mets to his brain. I am going to be brutally honest.
Ed was first diagnosed as stage four with e/c, mets to his liver, stomach and pelvis. I knew he had brain cancer also but he did not want a scan done to his head and his doctor did not push for it. We did six months of chemo, then one day Eddie couldnt walk and I brought him up the emergency room, which that doctor did scan his head, and revealed he had a huge tumor in the back of his brain. I was not surprised at all. They convinced him to start whole brain radiation within the next week. I knew deep in my heart, this was a recipe for disaster as my sister, who is a registered nurse, told both of us it would do nothing and probably make him worse., which it did both. About 1/2 way into these treatments, I would say about the third/fourth week, remind you he went everyday, five days a week, I noticed ed was changing and not for the better. He could not walk up the stairs, he was having terrible headaches, he was not with it most days but the worst of it all was it made his personality go away and he became very angry towards myself and my daughter. We talked to the doctor about this and he said it was from "brain swelling due to the radiation" gave us some pills and told us to continue., which ed did all his treatments.

I cannot tell you by the end of the six weeks, he could not get out of his bed, slept alot, but mainly he was not my husband. He would throw stuff at me, called me names, was basically a mean person. This was in July and we lived with this person until Septembe. It was living hell. They did scan his head and you know what, his tumor did not shrink, It grew!!!!!!!!!!! what a devasating blast. We never told Ed that his cancer had grown nor do I think he would of understood what we were ssying. he was that bad.

I would never advise anyone to do whole brain radiation simply because it did nothing.
the doctor told us upfront that there was only a 20@ chance it would work but ed wanted to take those risks.

Please make sure you know what you are getting into. The doctors do not tell you all of this.
I look back now and wish we never did chemo nor radiation and let my husband live out his days with most of his facilities, he was not a man when he passed, he was like a zombie.

I hope I am not offending anyone but truly, this is how I feel from the bottom of my heart.

please contact me if you would like to talk more.

Linda

Bluestar04
Posts: 8
Joined: Mar 2012

Thank you, everyone, for your responses. I am also a mom of 3 little ones, so if it takes me a couple of days to get back here, I do apologize. I appreciate each response, and am a big believer in "brutal" honesty when it comes to matters such as this. I've never been one for sugar-coating.

Here is where we are: My father is doing well right now, despite what we know about the scan results. What I mean by that is, his quality of life right now is good. He has had 3 months of "normalcy" since his brain surgery and recovery. He has traveled to Florida to visit with my brother and family, has been out golfing (Without a cart! That is a 6 mile walk! I find it impressive since he could not hold a pen to sign his name at Thanksgiving.), and goes for daily 1-2 mile walks. He lives alone (my mother passed 6 years ago; I am all the family he has nearby, though he has good friends). He has an apt. with a radiation oncologist in a few days to discuss further treatment, but I am fairly certain they will suggest WBR as this was what they talked about back in December, and the scan shows activity in more than one area of the brain. His oncologist is also looking into the drug Tykerb, as this one actually crosses the blood-brain barrier. This is where my hope lies, because he has responded so well to the Herceptin/Xeloda in terms of the original tumor, his liver, and lymph nodes. But is time on our side for that? I just don't know.

What I do know is that after researching WBR, I know for certain that if it was my choice, I would refuse. But this is not my treatment, he is capable of making this decision himself, and knowing my father, he will do what the doctors tell him. I trust his doctors, and have not had any issues with treatment up until this point, but I just have very serious reservations when it comes to WBR. Does anyone know how common the more severe side effects really are? Does anyone have any positive stories about it? And when you are given 6-12 months, and are fast approaching that 12 month mark, do potential side effects continue to be a real issue?

We are getting ready for a vacation in less than 2 weeks, one that my dad was supposed to join us on, to get all of our family together. Now it looks like, if radiation is the next step, that he will not be able to join us at Disney World. I worry about being away as he starts treatment. I worry about coming home to dive right back into the world of hospitals, moving our family back to his house (which we will gladly do again) in order to take care of him, etc. What kind of a commitment are we looking at? Can I do this for him? Is it something my kids should live with? I just don't know...

Thank you again for your thoughtful advice and support. My mother passed so quickly and without warning. There was nothing anyone could do. We have been given the gift of time with my dad, and I don't want to waste any of it.

(GinnyB: Great news about your SIL. That makes me feel better. May I ask her age? My father is 72).

cher76's picture
cher76
Posts: 302
Joined: Nov 2010

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.

Bluestar04
Posts: 8
Joined: Mar 2012

Thank you so much for sharing your story. It sounds like Rickie was a wonderful husband; I am sorry you had to lose him to this beast. Dad had his consultation with the radiologist this morning, and whole brain radiation has been decided on. I have done more research, and have come in off the ledge, so to speak, with my feelings on it. The good news is that after the dr. performed a few neurological tests, he told my dad to go to Disney as planned, and he will start treatment right afterward. It will be 3 weeks of WBRT and 1 week of more targeted radiation to the spot where more activity is apparent. I am glad we will be able to have our family vacation altogether, as it is getting both my family and my brother's together with my dad for a special time with all the grandkids, etc. I feel very blessed that we will have that time together.

JReed's picture
JReed
Posts: 463
Joined: Nov 2011

Lovely! Everyone is a big kid at Disneyworld! I hope you all have the best vacation ever and I know you will take tons of photos. Dad will cherish this time with all of you - you may need to remind him it is perfectly ok to go take a nap or two (you may all be ready for a nap after a couple of days).

So glad this is working out for you and I can't wait to hear what a great time you all had - you'll be making memories that you will each cherish forever - how beautiful!

Hugs and FEC,
Judy

Bluestar04
Posts: 8
Joined: Mar 2012

We are home from our vacation, and we all had a great time. Watching dad walk all over the Magic Kingdom and Epcot with all of his grandkids was amazing, especially considering that he basically had to learn how to walk again just a few months ago after his brain surgery. He is on day 3 of WBRT and so far so good, but we have been told the symptoms don't really show up until week 2 or 3. Just praying that he responds as well to this treatment as he has to all the other treatments over the past year.

Thank you for your support and kind words. I am sure I will be here on this site often as questions come up, and I find that I am becoming attached to others' stories here and pulling and praying for everyone fighting this beast. My best to everyone.

Kay

stephikindred's picture
stephikindred
Posts: 153
Joined: Mar 2012

I have to go and have a good cry now.

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