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Anyone had prophylactic whole brain radiation?
My father, a 77 year-old was diagnosed three years ago with non-small cell lung cancer in which he underwent a lobectomy RLL. While being followed closely after that diagnosis, he was diagnosed with small cell lung cancer limited stage. He is currently undergoing chemo and radiation treatment at the conclusion of these treatments. They are suggesting whole brain radiation for prevention treatment. Has anyone undergo whole brain radiation and what was some of your side effects thank you for sharing your stories with me.
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Alena,
My husband Seth just underwent whole brain radiation (prophylactic brain radiation) for 10 treatments, over two weeks, Monday through Friday. He has been totally exhausted and just now getting his stamina back. He takes Memantine 2tabs BID (twice daily) but they start on one tab SID (once daily) for resulting brain fog.
Palliative care prescribed Magic Mouthwath with Lidocaine 2% for his mouth, as his gums and tongue were very tender afterwards. He was also in significant pain from bone metastasis on his left hip, right shoulder, and a few vertabrae. So those areas were also mapped out and treated. He has since gotten a medical marijuana license- helps with appetite, a “Borans” patch- first the 5mcg/hour, then 10mcg/hour, it’s a transdermal Buprenorphine weekly patch on his arm, (needed to order a plastic ‘sleeve’ to cover from Amazon) and a prescription for “dilauded” or HYDROmorphone 2 mg every 4 hours. They do warn you about the brain fog but not the pain and extreme fatigue after radiation. I suggest making a consultation with palliative care NOW and being prepared;
1. Pill organizer - a MUST!
for daily meds, statin, antidepressant, blood pressure, and the memantine
We use two double ones with AM/PM & ‘pill prep’
For pain meds, I use Altoid tins with bright colored sticky notes taped on top for easy opening. I was using easy flip prescription lids and white tape with marker, but difficult to see in middle of the night when waking up in pain. I did not put any pain meds in the pill organizer/ that was just so as not to forget the daily heart & blood pressure medication, but he will likely be prescribed memantine for brain fog, memory, a well known Alzheimer’s drug that has been around for a few years and is very safe, he will work up to 2 pills twice a day, perhaps indefinitely…
2. Medical marijuana gummies
I really recommend this for appetite. Doesn’t really help pain, but does improve mood and give “munchies”
Besides losing all of his hair, Seth completely lost his appetite on radiation.
Seth likes the “A Good Day” 10 mcg but he only takes 1/4 - 1/3 so equivalent of 2.5mcg for appetite & mood. Depending on where you live, you may need to apply for a state license.
3. Sucralfate or Magic Mouthwash (compounding pharmacy- costs $60-$70)
Seth didn’t like the numbing sensation, so he just uses baking soda with distilled water rinses.
4. PAIN management- VERY important- try to fill ahead of time: Gabapentin 300 mg BID - TID (3 times a day)
Oxicontyn (if tolerated and not too constipated
Tylenol extra strength
5. Frozen bananas & lactose free whole milk & dates or berries and we use protein powder with monkfruit, in both vanilla & chocolate
6. Popsicles- I like the all fruit kind
7. Brown Cow yogurts, blueberry, strawberry, or any flavors you prefer of full fat yogurts
8. Last but not least, a haircut. Go ahead and get that head shaved, unless you like vacuuming the shower and changing the sheets daily. Go to Ross for less and buy a bunch of cute baseball hats. Maybe a pair of wear anytime black adidas silky sweatpants & a size down in white tshirts.
I will be thinking of your dad. Be gentle with him. Work an extra liter of fluids into his bloodwork visits, as self hydration will become difficult, and he will prefer to sleep most of the day.
Sorry for the long post, but I wish someone had warned us about the whole brain radiation!! It is really rough!! Feel free to pm me if you have any questions at all! Sending lots of love! XOLC
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7 ReactionsOh I almost forgot- Cerave cream (unscented) for dry skin on scalp and ears and forehead and these gel ice packs I bought at CVS for migraines or headaches- I bought 2 & rotated in freezer, as they melt fast! Could even have bought more!
Best of luck to you & your dad!! XOLC
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2 ReactionsAlso sorry for typo it’s a “Buprans” pain patch- highly recommend getting extra pain medication prior to commencing treatment. XOLC
Not me, a coworker's husband had limited stage sclc. He did have WBR prophylactically. He drove himself to treatment (illegal, shouldn't have) had no accidents. He was able to pilot his pontoon boat around the lake they lived on and fish. He did babysit his older grandchildren but they opted not to leave him alone
with the littles.
He had some memory issues. I never learned how bad they were. He survived another 7 years and passed from a heart attack.
Do ask if hypocampus preserving WBR is an option in sclc.
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2 ReactionsHi @alena76, has your father made a decision about the whole-brain radiation? I'm sure it's not easy to watch him go through the chemo and lung radiation sessions. How are you holding up?
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3 ReactionsAlso see these related discussions:
- Has anyone had prophylactic Brain Radiation to prevent Mets from SCLC?https://connect.mayoclinic.org/discussion/has-anyone-had-prophylactic-brain-radiation-to-prevent-mets-from-sclc/
- Anyone have Prophylactic Cranial Irradiation (PCI) for SCLC NETs?https://connect.mayoclinic.org/discussion/anyone-have-pci-for-limited-stage-sclc-neuroendocrine/
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