Anyone had radiation on their central nervous system?

Do you have to go through radiation to treat the cancer in your spine? I can’t imagine that this is your only option, have you tried to get another opinion to be sure because otherwise you could ask for trials that might help you without causing too much damage. I sincerely hope that you can get more information about this and perhaps more options, please don’t give up on hope and I will pray for you to be well soon.

Hi @codym, These decisions can be so difficult to make. I always feel more confident with my decisions when I have all of the information that I can gather. Through your cancer treatment, have you had a second opinion from a thoracic oncologist? If not, it may be time for that. In another post you mentioned that your oncologist didn't paint an overly optimistic picture of your future days. There is often a fine balance between being realistic and being hopeful. Try to lean toward the hopeful side. I know you are likely tired of the treatments, and exhausted. You seem to be young, strong, and healthy other than that pesky cancer. Are they proposing radiating spots in the brain, or other area/s? Know that many people go through brain radiation and still survive for many years.
You need to make your own choice. If/when I'm in your shoes, I'll be looking for a second opinion, with a lung cancer expert (even an expert in the field of my specific mutation if possible). I find that those experts often have a hopeful outlook.

hi @codym - it must be very frightening to think of losing your ability to swallow. I agree with @frouke and @lls8000 that getting another opinion seems prudent. doctors are not infallible. may I ask what kind of lung cancer you have?

@frouke @lls8000 @mamajite Sorry, I should have added more to my post. This is adenocarcinoma spread to my spinal fluid. (It's also about everywhere else in my body, just not causing problems) The radiation will be on my spine and brain. I have the eGFR mutation and was recently on Tagriso. They switched me to a new treatment of Lazertinib and amivantamab a month ago and unfortunately symptoms have progressed although very slowly. I lost the last bit of control of my face that I still had. I'm thinking radiation will be in my near future. My local oncologist called it a last ditch effort. It's not scheduled yet, I just expect it will be soon since I lost some ground since starting the new treatment. I also have an oncologist at Mayo where I go for scans. He's the optimist and I still do my scans at mayo because I don't want to lose him as a doctor.

@codym thanks for sharing more about your diagnosis and treatment. I also have EGFR mutated adenocarcinoma. (I have the inherited T790M mutation.) May I ask why they stopped Tagrisso? As I understand it, one of the benefits is that it crosses the blood brain barrier and is helpful for metastases to the brain. I believe @flusshund has had radiation for a brain met and might be able to share about his experience. To offer some hope, my local oncologist gave me about 2 years, 2 years ago. 2 of my 3 primary tumors have completely resolved. Hang on to hope and see the best doctor you can (I vote for Mayo optimist.) Hugs!

@codym, sorry to hear you're going through this. Yes, I've had radiation to my brain a total of 5 times. The first 4 were to clean up the edges after removing the 3.2cm diameter metastatic cyst. Back then, I also started Tagrisso which I'm still on.

Four years later I had a small recurrence in that area which was stopped by one more round of radiation. Unfortunately that last round led to necrosis which has caused drop foot on the right side because all of this is above the left parietal lobe.

I wish I had more positive news, but brain tissue is rather soft. As I understand it, the radiation has caused this delayed reaction because it also destroyed blood vessels, glial cells, and other brain matter that leads to a downward cascade. You didn't say where in the CNS you're concern lies. I imagine the spine won't have these issues due to the lack of widespread soft tissue.

You might want to check with MD Anderson as they have some of the leading oncologists in EGFR+ mutations. I wish you all the best!

@mamajite I had to stop the Tagrisso since my cancer spread to a new location and continued to get worse. At first, I had very slight facial paralysis but that spread to no control of my face. The Lazertinib is similar to Tagrisso I believe but more effective, it was just approved not too long ago. I was told it brings more side effects than Tagrisso but luckily, I haven't had that yet.

@flusshund As I understand it, its my whole CNS that will get radiation. The goal is to bring down the amount of cancer in my CNS and not actually get rid of it with the hope to buy me more time. The list of expected side effects is daunting. I had radiation on my brain when this all started, a spot that was causing severe headaches luckily that went OK for me. They expect energy loss, digestion issues, memory loss, hair loss, and they said it will likely effect being able to do my job. Things like math will be difficult also. My Dr said it's not something they advertise doing, but in my case might be worth it.

@codym, my heart goes out to you. This is so much to carry, and I’m really sorry you’re facing all of it at once. Whole-CNS radiation is a huge step, but it’s also a step taken with the hope of buying you more time and creating space for better days ahead.

Have you had a second opinion yet? Sometimes another set of eyes can offer options or reassurance you didn’t know you needed. And do you happen to have a targetable mutation or be on a targeted therapy? I’ve seen people get real, meaningful shrinkage and stability even after tough news, so I always hold onto the possibility that treatment can still push things in the right direction.

I’ve never believed in guessing our expiration date; as Olivia Newton-John, a 30-year breast cancer survivor, said, it doesn’t serve us. What does serve us is holding on to hope, taking the next step, and letting others lift us when we need it.

Please keep hanging in. We’re all here, rooting for you, every single day.

@flusshund Since you mentioned Olivia Newton-John, I would like to add Suzanne Somers. She had cancer when young and on the series of Three's Company. She got over that and later she ended up in the hospital. At that time they told her Cancer had spread throughout her whole body. She refused treatment and she writes in one of her books the tantrum she through, then left the hospital. Suzane lived another 16 years. When I was told I have cancer, I bought all three of her books. In them she shares what she did to stay alive and lot's of information directly from doctor's. It was encouragement to me, perhaps it would be to other's.