Has anyone had prophylactic Brain Radiation to prevent Mets from SCLC?

Posted by ohiogal8860 @ohiogal8860, Feb 15 11:18am

My husband was scheduled to start 10 radiation treatments to his brain this Monday 2/16/ to keep the SCLC he was treated for with chemo 4 cycles and immunotherapy. After much reading and research on case studies, we have decided to agree to this if he can set up the mapping to avoid the memory canters of my husband’s brain. Hippocampus Avoidance (HA). The radiology oncologist said that whole brain radiation treatment doesn’t prolong life, just keeps cancer from entering brain. So much to learn and know and trouble is you don’t know what your don’t know!
Had anyone here had experience with prophylactic brain radiation and if so, what side effects have you experienced? Brain swelling, headaches, hair loss, nausea, memory loss, hearing and swallowing trouble? Did having the procedure keep the cancer at bay? Did it decrease your Quality of life?
This HA that we requested, he agreed to do but said he would have to get it approved by insurance and different treatment has to be set up and he would call us back.
He is on Tecentriq as his monthly immunotherapy. Keytruda apparently is used for NSCLC; which is known to cross the blood-brain barrier better.
Sorry so long and so many questions piled in one post! My husband looks to me for answers because of my nursing background but never in Oncology, so most of this is foreign to me.
Thanks for any shared experiences.
Donna

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artistrose | @artistrose | Feb 17 1:49pm

I really don’t know anything about this. However, on another lung support group a man posted about “radiation necrosis”. I don’t know how many treatments are done before that occurs, or how often that occurs. However, he had a devastating side effect from the brain necrosis and recommends that at the first sign of possible radiation necrosis, pentoxifylline and vitamin E should be prescribed. Anyway, again, I don’t know about this myself but since I’m NSC stage 4 I copied his note on this in case it were to come up for me.

Lisa, Volunteer Mentor | @lls8000 | Feb 17 5:11pm

In reply to @rmccoy1961 "Hi! He was diagnosed 11/15/25. He is 66." + (show)

@rmccoy1961, It's good to hear that he's doing well. It's never easy hearing a special person in your life has cancer. He's fortunate to have you by his side!

rmccoy1961 | @rmccoy1961 | Feb 17 6:25pm

In reply to @lls8000 "@rmccoy1961, It's good to hear that he's doing well. It's never easy hearing a special person..." + (show)

@lls8000 thank you. I will admit, I have been a little discouraged lately, watching him being so lacking in energy. He is used to being really active and always doing something. But I am doing what I can. 🙂

mamajite | @mamajite | Feb 17 8:06pm

In reply to @rmccoy1961 "@lls8000 thank you. I will admit, I have been a little discouraged lately, watching him being..." + (show)

@rmccoy1961 cancer fatigue is such a frustrating symptom for patients and their loved ones. (I'm writing this as I'm trying to gather enough energy to go change my sheets.) what kind of lung cancer does your husband have?

rmccoy1961 | @rmccoy1961 | Feb 17 9:15pm

In reply to @mamajite "@rmccoy1961 cancer fatigue is such a frustrating symptom for patients and their loved ones. (I'm writing..." + (show)

@mamajite it is non small cell adenocarcinoma. Primary tumor is from the lung but no actual cancer has been found there. A brain biopsy on one of his brain mets showed it started in the lung.

mamajite | @mamajite | Feb 17 10:28pm

In reply to @rmccoy1961 "@mamajite it is non small cell adenocarcinoma. Primary tumor is from the lung but no actual..." + (show)

@rmccoy1961 that's what I have, too. did they test the biopsied tumor for mutations? I'm taking Tagrisso because I have various EGFR mutations.

rmccoy1961 | @rmccoy1961 | Feb 17 11:20pm

In reply to @mamajite "@rmccoy1961 that's what I have, too. did they test the biopsied tumor for mutations? I'm taking..." + (show)

@mamajite His is KRASG12C. I know he is getting a targeted immunotherapy in addition to 2 chemo drugs but I can’t recall the names right now. Apparently, from what I have read, this is a common one for NSC lung cancer. He quit smoking 20 years ago but he was a heavy smoker before that. He was also exposed to toxic water at Camp LeJeune when he was a Marine.

mamajite | @mamajite | Feb 18 2:02am

In reply to @rmccoy1961 "@mamajite His is KRASG12C. I know he is getting a targeted immunotherapy in addition to 2..." + (show)

@rmccoy1961 I'm not as familiar with the drugs for KRAS mutations, but I know a lot of progress has been made in the last few years. I hope the combination your husband is getting will work well for him without difficult side effects. Keep us posted on how you both are doing.

Lisa, Volunteer Mentor | @lls8000 | Mar 16 5:12pm

In reply to @rmccoy1961 "@mamajite His is KRASG12C. I know he is getting a targeted immunotherapy in addition to 2..." + (show)

@rmccoy1961, Just checking in. There are many of us with no risk factors for lung cancer. It's difficult to know what caused our cancers. Possibly just an error in cell replication. That's in the trillion-dollar question. 🙂
How is he tolerating treatment so far?

rmccoy1961 | @rmccoy1961 | Mar 16 6:00pm

In reply to @lls8000 "@rmccoy1961, Just checking in. There are many of us with no risk factors for lung cancer...." + (show)

@lls8000 Hi! Very well! His only side effect is tiredness. Of course, being a guy who was always doing or working on something, he gets frustrated. He gets a follow up Pet scan in 4 days and a follow up MRI next week so we should know soon how he is responding to treatment.