Dad concerned about Whole Brain Radiation Therapy

[Bmcarter]

Morning all! My dad was recently diagnosed with stage IV small cell lung cancer with metastasis to the brain. They were able to remove most of a very large brain tumor and want to follow up with radiation to his brain before starting chemo for his lungs and lymph nodes. He is on board and willing to fight, but he is struggling with the idea of whole brain radiation. Due to the aggressive nature of small cell, it's imperative that all cells in his brain are targeted. He feels like this method could 'fry' his brain and he won't be able function. My siblings and I have tried to research specific quantitative data surrounding side effects of this treatment, but there are so many variables that it's hard to really get an idea of what he should expect. I thought I would reach out to see if anyone here has experience with whole brain radiation and could speak to personal experiences with the long term effects, like short term memory loss?

[Lisamk55]

Hi again!

My dad had the same concerns! He did not want his brain radiated on. He was VERY hesitant! But after 3 weeks of it, he did not act any different , never had any speech issues or strange behaviors. He has his whole brain radiated as well. My dad also said that during the radiation treatment everything would turn purple in the room for about 3-5 seconds. And then it would be normal. This scared him the first time. The radiaogist said it's normal. It doesn't happen to everyone though.

Like I said in my my last post, he had to put some aloe on his head to help with some redness, and had some other physical side effects.

There was only a couple of times he forgot what his entire dinner was or that I called him. But that was just a couple of times.

Tell your dad to hang in there. He can do this!!!

[Bmcarter in reply to Lisamk55]

Thank you so so much! I am thrilled for your dad and for what that may mean for mine!! I will definitely share this information with him!

[Denzie Moderator Volunteer]

Some people do very well with wbr. My friend C had it and continues to babysit and is active on Facebook. She has difficulty completing the puzzles rated hard in the web pages she has always visited and now does those rated medium. Her dr put her on Namenda prior to radiation and feels it helped her maintain her minds flexibility.

[Bmcarter in reply to Denzie]

That is great feedback! That's definitely something he can relate to!! Thank you!!

[Lesleykay21]

Hi there. My dad just finished chest and whole brain radiation on Thursday he has small cell lung cancer too. My dad had the exact same thoughts when they wanted to radiate his brain. We had to talk him into it. He handled it fairly well- for him it caused extreme tiredness and a bit of balance issues. We also put lotion on his head because he said it felt almost sunburned ( not horrible). Also- he has pretty heavy "eye goops" with a slight burning sensation which his radiolost said was a side effect. We put a warm cloth on his eyes every morning and during the day to help with the eye goops . Tell your dad to at least give it a shot and that you have prayers from Maine! You're not alone!

-Lesley

[Dterwill]

Bmcarter. I had full brain radiation in July if 2016. For precautionary measures & still ended up with mets to the brain. I have since moved on to MD Anderson & had a Gamma knife procedure. Sending many prayers!!

[kegler299]

To BMCARTER: I saw your post about your father and I wanted to comment. My mother was diagnosed with stage IIIB NSCLC in May of 2015. She did well after going through chemo and radiation. Five months later the doctors found a few brain tumors. Some were small and were watched over time but one had to be removed. My mother choose gamma radiation instead of Whole Brain radiation. It was successful and she's been relatively ok (with minor set-backs) until November 2017 when they found the cancer had spread to other parts of the brain. My mother decided to go with Whole Brain Radiation as treatment. Our experience was not good. After the 8th treatment she was taken to the hospital with an upper respiratory infection. It's now January 2018 and she's under hospice care and will not last long. This treatment fried her brain. The quality of her life now consists of lying in bed and not knowing which way is up. I can go on and on but the bottom line is that I would not recommend this procedure for anyone. I hope your father is OK.