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Need help regarding whole brain radiation decision

Bennette
Posts: 65
Joined: Mar 2012

I am new to this board, I stared on the kidney cancer board in late Feb, when my mother was diagnosed with stage IV kidney cancer. She has been following treatment guidelines for the kidney cancer and mets in lungs, spine and femur; but after my repeated concerns about her being confused they did an MRI and found lots of tiny mets in her brain. Due to the number and the lack of penetration by drugs to the brain, they are recommending whole brain radiation treatment. My mom is 70 and has been living with me over a month now, because they have her using a walker due to the bone mets in her femur. That is getting better now and working on switching to a cane - but also because initially she stopped eating after her kidney was removed. That is now fixed and she is eating better and getting calcium treatments to keep her levels down. But this brain radiation sounds horrible and not doing it sounds horrible - what are we REALLY looking at. The statistics don't help, I would like some input from people who have been through it or are caring for someone who has been through it. Our original goal was to get her back into her apartment by the end of the summer. Will she be able to live on her own after brain radiation? How long, really, before bad side effects start showing up? Anything you know and can share will be helpful. Thanks in advance!
Bennette

BenLenBo's picture
BenLenBo
Posts: 144
Joined: Feb 2012

When making decisions discuss with your mother what her wishes are, not what you want. It's her body and she is the one who is suffering with cancer that is moving around in her body. Pray that you have the strength and courage to do whats right. Remember the Lord never gives us more than we can handle. Take Care and God Bless!

Bennette
Posts: 65
Joined: Mar 2012

Thanks. Unfortunately, my mom is going to rely on us to make the decision. She is already confused, and the pain meds and steriods making her a little goofy. I am just trying to find out what it is really like after WBRT, mainly because what I have found out is much different than our doc spelled out when he told us on Monday. I know she wants to have her senses about her and be able to take care of herself, however, she isn't totally that way now. When this started I tried to get her to join a board or something to find out more, etc., but she wouldn't. Right now, the computer frustrates her and she gets confused on just how to get on the internet. She was never extremely computer savvy before, but she worked on one everyday before all this happened.

So I am just basically trying to get input on what it has been like with or without WBRT, from those who have gone before or the people who were close to them. I want her to have the best chance at survival, but I don't want her to have to live in a way I know she doesn't want to live either. I also want to have enough information to ask good hard questions when we all meet with the Radiology doctor on Thursday.

MemphisMargaret
Posts: 18
Joined: Mar 2012

Bennette,

Every person handles things differently so I don't think anyone can say exactly how your mom will do with the WBRT. My husband did 2 weeks of daily but he is also taking 2 chemo treatments at the same time. He was just tired at first but then all of a sudden he got deathly ill, throwing up, diarrhea, not knowing he was even going, then didn't know me either. He ended up in the hospital for a week too week to move. His head was very scaly and irritated even with prescription oil, sween cream, his hand was grabbing at it all the time and rubbing it, then his ears were affected, behind the ear became very raw, his ears were swollen almost completely shut. He lost his hearing for about 2 weeks. I am not trying to scare you just letting you know what could happen...After about a month, his skin is like baby soft skin all the burns and scaliness is gone, his hearing is back. He walks with a cane. The doctor's opinion is that the combination of chemo we were using coupled with the radiation is what made him so terribly sick. Talk to your doctor about using the radiation with chemo. I have also read that using combo chemo and radiation has had great success. For us, the original brain tumors have not grown or spread beyond the brain. We do have a new tumor in the brain but I am sure it is just due to the melanoma and not a result of our efforts to kill the beast. My prayers are with you. My husband is also confused alot but mostly just tired. He has a positive attitude and says we have 30 more years ahead of us. For us without it and the chemo he wouldn't be here today according to the statistics. I try to thank God for everyday we get together. I know he wants to go back to work but I honestly don't know how that will happen without a true miracle. Be blessed and try to be wise.

kulaken
Posts: 14
Joined: Sep 2011

hello Bennette:

I have gone through full brain at 48 yrs of age , it was a grueling process having to go every day .
i went for the month of Sept last yr ,, all i can tell you is if i had another choice , i may have looked at it , the side affects were , extreme fatigue , memory loss , cognitive skills were also lost , balance issues, radiation burns on forehead and ears, the steroid Dexamethazone i was on was horrible , my appetite went way up , i gained 30 lb's in less than a month and i was irritable ..

after about 2 months the fatigue set in double time , i spent almost 2 months in bed , not being able to, or have the strength to get around much ,

but now after many months im feeling better , stronger , some of it comes back , but not all of it , I wish you and your mother all of the luck in the world ,,

KEN

Bennette
Posts: 65
Joined: Mar 2012

Memphis & kulaken,

Thank you for sharing your stories. I really do want my mom to go into this prepared for what might happen. She already hates the steriods, but that seems to be something she will have to stay on longer if she doesn't go with radiation treatment.

We are going to try as hard as we can to find an alternative to WBRT, but I think she has decided to go forward with the whole treatment if are unable to find an alternate route. We are just going to go into this with all our eyes wide open and prepared for whatever comes. She has decided that letting the tumors grow is going to put her through similar issues, just sooner, she wants more time! I told her I would be there and help her through whichever course she chose.

Lots of hopes and payers will be starting this journey out, hopefully we will be prepared for the worst and will get better than that when it is all said.

We have our consult on Thursday and we will fight for something else first, then go forward from there.

Thanks again for sharing!

Bennette

Hello1968
Posts: 3
Joined: Jun 2012

Bennette, my Mom had a will to live and within 4-6 weeks she was gone after the WBRT. Combo of the mets to the brain/ swelling- radiation. But if your Mom is a fighter like mine, you have to get in the fight. There's not much alternatives when they have numerous tumors. My heart hurts with you. Bless you and your family.

MemphisMargaret
Posts: 18
Joined: Mar 2012

Bennette,

Praying for you and your mom. Keep me posted.

Bennette
Posts: 65
Joined: Mar 2012

I had to take my mom to the ER last Thursday, they found she had a rupture in her bowel system and since then it is not healing and they don't think she can survive a major surgery. We put a DNR in place and they have ceased her treatments, but are keeping her on IV antibiotics and pain meds while we wait to move her to an inpatient hospice. We spent yesterday touring them to find the best one and hope to move her from the hospital to the hospice in the next 2 days. She seems relieved. It is been a hard, but short, fight and I am so glad we didn't do the WBRT as she would probably not have been recovered from that at this stage. She is coherent and able to enjoy the remaining time with her family and friends and I guess you can't really ask for more than that.

Thank you to all of you who offered me support and advice! I wish you all the best in your continued battles and I hope you WIN in the end. We might not have beaten the cancer, but at least we are spared the trauma and upset that would have likely followed with her having so many brain mets.

Yours truly,

Bennette

MemphisMargaret
Posts: 18
Joined: Mar 2012

Bennette,

My prayers are with you and your family and that all of you find comfort and peace. My husband has good days and bad days and we signed a DNR from the beginning. He is off one chemo, done with the other. We go for a gamma treatment on 3 growing tumors on the 23rd. After that, we just wait and see. God bless you and good luck with your challenge.

Margaret

Bennette
Posts: 65
Joined: Mar 2012

Thank you all for your prayers!

My mother passed away on Friday. The hospice took great care of her and it gave us all a place to gather daily to visit with her and each other. She was surrounded by loved ones in the end and we all had many days to share with her and say our good-byes.

I hope the best for all of you in your continued fight and thank you for everything you have shared with me along the way.

Sincerely,

Bennette

Tammyhibb
Posts: 1
Joined: Jul 2012

My husband is now on his fourth day of radiation, he has nine tumors in his brain. He was diagnoised with Stage 4 small cell lung cancer that has spread to his brain, stomach and in his renal glaze we are so scared. But he has a GREAT out look he told me he would go down fighting. My husband has not gotten sick with his treatments, they are going to do 17 days of radiation on the lung and 14 treatments on his brain. Before they will even consider doing chemo on my husband. I really hope that he will not have a lot of bad reactions.We were also told that he would not be eligable for surgery.

marlee425
Posts: 12
Joined: Apr 2012

Tammyhibb,

My significant other will begin whole brain radiation on Monday. He was diagnosed with Stage 4 melanoma in March. It started out with a spot on his back, that went to the lymph nodes, and the brain. He had stereotactic radiation on 3 spots in April. The first MRI afterwards showed signs of decay; however, the MRI recently showed 3 additional tumors. He has a great outlook, as well; even though we are both scared of the unknown. He has completed the first 4 infusions of Yervoy/Dacarbazine combination therapy. Due to some other issues related to the chemotherapy, he had an MRI of the pelvic area a few weeks ago and shows no sign of disease. He is scheduled for a PET/CT scan (neck down) at the end of the month and then his oncologist will recommend further treatment. Meanwhile, he will begin radiation Monday through Friday for the next 3 weeks.

We continue to hope and pray for healing and a cure to this horrible disease.

Marlee425

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