Since my dad is declining neurologically, I am faced with a tough, tough decision and wondered if anyone had thoughts or experiences themselves with whole brain radiation, good or bad? My dad is currently doing focal radiation to the brain stem. Moffitts treatment protocol for lepto is craniospinal radiation. His radiation oncologist now thinks whole brain radiation carries a risk for my dad. But it’s to the point where it’s screwed if you do, screwed if you don’t and I don’t know the right answer. He’s getting to the point where I can’t understand him and he has a feeding tube through his nose because he has lost his jaw strength and tongue issues. The lepto has caused him to not be able to swallow well anymore. Every doctor is being pessimistic, saying it’s only going to get worse which is sending me into panic mode on convert to whole brain radiation Monday if his radiation oncologist is willing, or to stick it out with focal brain stem radiation as he’s now had 3 out of 10 treatments and has declined after 3 so far with the leptomeningeal disease. I am more concerned about his brain than anything at this point, to stop and or slow down the lepto in the brain. I don’t know whether to convert to whole brain radiation and take a chance or stay with what we’re doing even with the decline, so hearing other experiences with whole brain radiation would be helpful. My utmost concern is helping him and not harming him and I don’t know what to do on this. Everyone says at this hospital he’s stuck at that after whole brain radiation it fries the brain and you’re never the same. I don’t want to harm my dad in trying to help him. He is getting focal spinal cord radiation also. He needs Keytruda or immunotherapy too if I can somehow make that happen soon.
Whole brain radiation experiences? - Lung Cancer Support
Whole brain radiation experiences?
Lisa, we are all praying for you and your Dad, but there is no one on this forum that can answer your question. All I can suggest is that you have an objective discussion of pros and cons with the radiation oncologist and any other Doctors there that you may also trust. You are both in my prayers, judg69
Thank you for your prayers! No, I’m not asking for someone to tell me what I should do. I am just asking for what other experiences have been for themselves with whole brain radiation, for those that have had it. Positive and or negative stories. Everyone is only telling me negative stories at this hospital of why no one should ever do whole brain radiation, so certainly someone has an experience with whole brain radiation here where I can hear other stories and opinions, good or bad, straight from those who have undergone it.
Hi Lisa. My Dad was losing so much weight that we knew something was wrong. The cancer came back in his brain and it’s all over the place . He starts full brain radiation next week, so I am also wondering about it. I will try to update this as he goes . I’m the youngest in the family so they tend to keep things from me . My Dad was doing awesome with immunotherapy. I don’t know what happened 😔
Sorry to hear about these changes. Keep us posted on how he does with radiation. Prayers going up.
Judy
Praying for your family and your dad. I’m an only child - sometimes I wish a sibling was protecting me a bit from this but then again I would feel like you and want to know and do more anyways. It’s hard to try to figure out what happened and why - my dad was stable since diagnosis and then it went into a rare form that less than 3 percent get. I have asked myself what went wrong daily, so just know I understand and it’s not easy but we gotta stay strong for our dads. From what I have read, lung cancer that has metastasized to the brain can do well with radiation. Especially if he has actual tumors they can target. My dad has the cancer in his cells of the meninges so they can’t target a tumor, and today I found out they are doing a form of whole brain radiation to the meninges that wrap around the brain. My dad cannot receive cyber knife or radiosurgery etc so find out what kind of radiation to the brain your dad is receiving - if it’s actually whole brain or if they’re targeting each one with a form of Radiosurgery. I did read they can target quite a few tumors safely with radiosurgery as opposed to whole brain. Sorry I can’t be of more help on this. I’m trying to figure it out as we go too. All my best and many prayers.
In reply to Cyberknife versus whole brain. I heard bad things about whole brain and that as many as 10 areas could be treated by Cyberknife, which would be preferable to SRS ( Steriotactics) because with Cyberknife the area to be treated does not need a mask or anything to retain the head.
With our preference to Cyberknife we met with the specialist and he recommended we go with whole brain because Ed had already had 3 previous small areas that were treated by SRS. Their feeling was there might be other unseen cells there and whole brain would " clean the slate", so to speak. That sounded logical and reasonable so we took the advise.
So, if these are first areas to the brain, I am not sure what the decision might be by those who would know.
I have been told that lung cancer usually goes to the brain and adrenals. Ed's first spread was to one adrenal. He immediately had SBRT.
It then went to the brain.
Hope this clarifies our experience with whole brain vs Cyberknife.
Gloria
Unfortunately it’s whole brain this time for my Dad. He had gamma knife done in the beginning with great results but now the cancer is in all the fluid and the kinds stopped counting after 36 tumors. They referred to them as tiny flecks.
If it’s in the fluid, are they calling it leptomeningeal?? Because they just found the cancer cells in the cerebrospinal fluid of my dad, which is why they are calling it leptomeningeal disease now. Did they mention anything like that? Did they mention something like intrathecal chemo into the fluid afterwards?
I’ll try to get those answers. He has so much going on I’m not sure. He got his mask fitted last night but was with my mom and brother. I was at work. Is your Dad doing ok with his weight? I saw your earlier posts that he was around 130 I believe?? That’s pretty good! My Dad is down to 105 . Wish he could gain more weight before he starts all this crazy stuff
I can give you all a positive on whole head. However it has only been a few months since completion. So far only problem is occasional numbness on one side that last for a minute or two. No hair regrowth yet. May not get any. His lung tumor was stable when he had whole head. In years past, he had 3 SAR treatments and then all of a sudden 6 small areas appeared. First MRI after treatment is next month. If any areas are left they will do Cyberknife. I heard alarming things about whole head also but you do what you have to do and everyone is different. Conditions at time of treatment are different.
The suggestion to you that no one on here could advise you what to do is absolutely correct. Your dad's current condition would make this decision almost impossible for anyone. It is one where you will have to depend on your gut feeling and the doctor you have gained trust in.
I do not think they would be doing whole head if there had not been some success even if there are times when it goes bad. Ed takes Mementine for 6 months to prevent short term memory loss.
Wish we could be more help.
Thank you. That is great to hear something positive ❤️
Thank you, Gloria. I found out today he is receiving a form of whole brain on the meninges that wrap around the brain. Still not sure I understand it fully but I believe it’s the best and safest they can do, but won’t be enough as he needs systemic treatment and no one is willing to do systemic treatment on him unless his cognitive level improves, at least per Moffitt etc. He is finally going outside with us in a wheelchair to get some fresh air. The hospital wouldn’t let us take him but now they are allowing it. First time he’s been outside since the 16th. He is trying so hard to get better and get home. His goal is to get to moffitt. Not sure they will take him but we’re trying to get there. And in about 10 days I should hopefully get results back from foundation one genetic testing. How is your husband doing with physical therapy?
What a difficult place you are in right now. All you can do is talk to doctors and get their opinions. How does your mom feel about the situation? Is there a way for you to know how your dad might feel about doing this? Whatever decision you make, just know you have done your best.
Once your decision is made don’t second guess yourself as that will make you miserable. He knows you love him.
Prayers going up,
Judy
My mom defers all medical to me. A doctor calls her and she says “call my daughter”. She gets confused and overwhelmed with all of this and breaks down. Every day I wake up sick to my stomach, spend countless phone calls with the doctors before I even get to the hospital and then do it all over again there until late at night when I go home and start over the next day. My dad is now pushing himself harder than ever to get better. He’s on a mission and no one is going to tell him he can’t and we are now taking him in a wheelchair outside and he wants physical therapy. He is working with speech therapy now for swallowing. I made the decision yesterday to take him off the Keppra the hospital put him on. He was declining on Keppra and I put two and two together. Since stopping the Keppra his arms have stopped flying everywhere and hitting his face repeatedly. They are finally normal and still and he has full function of them now. It was getting sooo bad. The bad thing is the potential for a seizure, but the decline on Keppra was very great. As of now, today starts second day without Keppra. I also stopped his pain medication they were giving him continuously (oxycodone) as his pain level is now a 1 and there’s no need to keep giving him 2 oxy’s every 4-6 hours. His pain level has remained a 1 off oxy. Plus the Keppra, Robaxin and oxy together has a CNS reaction I read. I also read the Keppra with lepto and brain metastasis can cause rapid neuro cognitive decline mimicking rapid cancer progression. Since his brain scans were stable and not showing progression in hospital and yet he was declining rapidly, I suspected Keppra. I know so many have done well on Keppra but I’m not sure my dad is one of those people. I don’t know if I will keep him off or try a very low dose next, but he has improved quality off. Just worried about a seizure. He had 1 with no previous history.
Drugs can really cause problems. After using Xalkori for 7 months, I fainted, broke my ankle in 3 places. When I went for CT scan, I went into cardiac arrest because of prolonged QT wave in heart, a side effect though not a common one. Switched to Zykadia for 5 months, monitored heart and when it looked like it was going to be a problem went back to Alimta. I now have atrial fibrillation which I take medicine for.
Sounds like a breather from medication is helping. Don’t know how this will be long term. Only a doctor knows that. You continue to be in my prayers.
Judy
Hmmm...I'm probably not a good example but after having headaches on and off for about a year they finally did an MRI and discovered lesions in the brain. Turned to to be from nsc lung cancer. First thing the oncology team at the VA did was 5 consecutive days of radiation to the head including "cyber knife" focal radiation. You don't feel a thing, it's like a dental X-ray. Then they started chemo and I lost my hair after 2 weeks. Nothing mentally averse has happened. I think I can still give you the value of Pi to 10 decimal points and do cabinet making where I'm cutting wood to 1/32 accuracy. So I don't have all your dad's medical problems and am going in for my 4th PET scan this Thursday. My small tumor had been getting better so who knows? I just go with whatever the consensus is of the medical team.Seems like your people are not a "team". Hope something good happens for your dad! Best wishes to you all from Minneapolis.
So happy to hear from you and that you did well with brain radiation!! Thank you so much for the info. And no, my dad does not have a team working on his behalf. He is in an Orlando hospital that has a cancer hospital next to it. They kinda just don’t know what to do with him and he has NO oncologist following him. Moffitt in Tampa said come see us when cognitive level is 2. He’s 3-4 now. The hospital doctors stop any oncologist from seeing my dad because they just want to keep saying “days”. They also would not allow him to be released either when I wanted him taken to Jacksonville. It’s a true mess and injustice. He does have his radiation oncologist now there and is receiving radiation. All my best to you!!
I am so sorry you and your dad are in this situation. I have learned over the years when I don't know what to do, to ask my oncologist what he would do if he or a beloved family member were in my situation. I have gotten really good advice doing that. It might be worth a try.
Lots of prayers and good thoughts.
Jean
Good morning. I’m not sure if you remember my first posts..but long before my lung cancer diagnosis, I had a primary brain tumor(2005). Initially I had a third ventriculostomy, then another third ventriculostomy and finally a craniotomy to remove the tumor. Because the borders were so irregular my surgeon thought it best to do a single round of whole brain radiation. He said if he left just one cell behind that could be real trouble for me down the road. He explained the risks of doing the radiation to my whole brain and what short and long term effects were possible. Everything from short term memory loss to complete blindness to paralysis, hair loss, etc . He was confident that having the radiation was the best thing to do. So I did. A week after the treatment I lost a good portion of the hair in my left eyebrow. It grew back in a month or so. That was it. All that worry for nothing. Had I not opted for the WBR it could have had grave consequences. We have to trust that if the doctor thinks the benefits of a treatment outweigh the risks then that’s likely the case. I think I’ve said this to you before that if you don’t trust the doctor....find a new one. If you DO trust the doctor....then trust them completely. Doctors are amazing humans with tons of skill and knowledge ...but they are also egomaniacs who do NOT want their patients to die. That one fact makes them try really hard to keep everyone alive. They would never have a long career if all their patients kept dying. It’s not good business 😉. None of us can tell you what to do as this is a decision to be made by your Dad and family but I wanted you to know that WBR can be a safe and effective treatment and it sounds scarier than it is. My husband will tell you that even after all that cutting into my brain and radiation that I’m STILL smarter than him lol. It didn’t take away anything but the tumor.
Good luck and keep us posted.
What type of cancer does your dad have?
NSCLC stage IV adeno, leptomeningeal
HI Lisa,
Checking in on you and your Dad -- concerned that I have not see you posting an updates?
Praying,
Lisa
Thank you. My dad is still here fighting but he’s in the hospital still. They are now wanting to intubate him and move him to the ICU. This has been the most horrific 2 weeks and I have spent every day in the hospital all day fighting with doctors and nurses who treated him like he is mental. When I can I will post about leptomeningeal, my dad’s experience, my experience and any other info that may help someone now or in the future. But right now we’re still fighting but I believe I am going to lose my dad and I’m heartbroken.
On No! I kept hoping he would make a positive turn, but this does not sound good. I'm sure you are heartbroken and my heart goes out to your all!
I am very sorry that you Dad does not seem to be getting any better -- pray that he is comfortable and at Peace...
My heart breaks for you and your dad. Sorry his fight has been such a tough one. I pray for peace for all. Really want him to survive but it sounds so difficult for him. I just read your recent post on leptomeningeal. It was very informative. I have had two of the symptoms, the unsteady walking and headaches. My doctor did do an MRI and spinal tap in the spring because of my symptoms. The results came back normal except for lesions on parietal bones which doesn’t seem to concern anyone. No nausea. Just couldn’t walk right for over three months. Kept telling everyone it wasn’t vertigo since I know what that feels like. Walking better but still wobbly at times. While this was going on, I jokingly would say, “Weebles wobble but they don’t fall down” Now, thanks to your sharing I will actively monitor this. I continue to pray for your family.
Judy
Hi Judy, I just got home late from the hospital to take care of my dogs. My fiancé is with my dad still at hospital. This has been the toughest time in my life so far and it is so heartbreaking. He is still fighting and I am still fighting for him. But he has so much against him now. I will get into more later. But I did want to tell you, the way you described your symptoms concerns me. Please don’t be alarmed or fret over it, but please keep a watchful eye on it. My dad first had the headaches and unsteadiness as you described before the nausea came later. I actually believe this may have started back in July with more pronounced in September and ultimately ended up where we are today. From my research and in talking to doctors, it is common to NOT find leptomeningeal on the first lumbar puncture, but can sometimes take several lumbar punctures to find it or have it show. So if you are still concerned about it today, ask about another lumbar puncture for peace of mind. The brain mri for my dad showed slight lesions but the MRI results came back inconclusive to what it actually was. It was weird but no one had answers on what it was. The spinal mri showed an area that lit up slightly but again, no one knew what it was. My dad started walking well again a few weeks ago and then one day his legs gave out and he fell to his knees. When it happened, it came quickly and full speed. If it doesn’t feel right to you, dig further until you’re satisfied with the answers. I believe catching it early is key. You’re more than likely well and fine, but now you can watch a little more and request more tests if you’re still concerned. Thank you for your prayers and I keep you in mine as well.
All prayers for you and your dad, judg69
I started my adeno nsclc with whole brain and focal brain. That was 16 months ago. Been on chemo ever since. The radiation caused my hair to fall out after 2 weeks. Other than that I had no effects.
Last day of radiation for my dad!
