Whole Brain Radiation for brain mets - is this the best option? - 1250347

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wierwilles3
Whole Brain Radiation for brain mets - is this the best option? - 1250347

I have been on Xalkori for 14 months for Stage IV NSCLC - and the lung cancer is now very small - one nodule 10x5 mm.

However, yesterday they found "at least 6" brain mets, largest of which is 15x10mm. I am going to a radiation oncologist on Monday to discuss WBR. I was told that due to the number of mets, WBR is really the only viable option. I am 57 and in great health, and live a normal life with the LC, due to Xalkori.

From what I read, it doesn't seem that sterotactic or GK are the best with so many mets. I find many that are against WBR because of side effects. I would like to know others' experiences and opinions on this.

Thank you,
Sharon

catdander
Reply To: Whole Brain Radiation for brain mets – is this the

Hi Sharon, Welcome to Grace. First let me congratulate you on such good response to xalkori. But I don't think I can really imagine the feeling of finding these brain mets. I am so sorry. But you are right about WBR really being the only real solution. From all the hard data and most if not all the input here the cognitive side effects are rarely bad or long lasting. The longest most debilitating of which is profound fatigue that sets in around a month after treatment is ended and last a month or so. We have many professionals who resume work afterward. There are several people who I hope will add personal experiences. But the real message is without treatment the symptoms will happen and with treatment it is very likely you will be rid of the tumors and move on with life.

This is a link to an excellent blog post about WBR http://cancergrace.org/radiation/2012/02/24/refining-wbrt/

Good luck, let us know if you have more questions and keep up updated.

Janine
forum moderator

wierwilles3
Reply To: Whole Brain Radiation for brain mets – is this the

Thank you Janine. I appreciate your input. I am coming to grips with the thought of WBR, and your reassurance is very helpful. I just talked to a friend whose husband is a radiation oncologist, and it seems there are drugs that might help with the cognitive function loss if it occurs.

Sharon

certain spring
Reply To: Whole Brain Radiation for brain mets – is this the

Hallo Sharon, what brilliant results you have had in the lung. Given your excellent response, it must have been very unnerving to find out about the brain mets, and I am sorry for that.
I was diagnosed with multiple brain mets at the same time as they found the tumour in my lung. The largest was 1cm - I offer this just to reassure you that yours are really very small. I am not in the US, and mercifully did not read anything about WBR on the internet as I was too traumatised to read anything at all. I had the treatment, two and a half years ago, and have not regretted it.
There is no question, it is distressing when your hair falls out, as it will (though mine started to grow back within 4 or 5 months). And, as Janine says, the fatigue is tough, though strangely delayed in that it only kicks in some time after treatment.
As to cognitive effects: I occasionally forget names and sometimes can't remember what I meant to fetch from a particular room in the house. However I'd like to put on the record that my brother, six years older than me, is a lot worse with names than I am! Sibling rivalry apart, the effects I have noticed are very subtle, and (to my mind) a price worth paying. Best wishes.

catdander
Reply To: Whole Brain Radiation for brain mets – is this the

Thank you Sharon for the reply. I'm glad you have a close contact in the business. I think you can't receive too much reassurance in the matter of cancer, an obvious view coming from me but have found so many in agreement. The fear of the unknown is too often much worse than reality. As we have been reminded hear many times, the random stories written or told are often that of worse case scenario.

Please take
Janine

wierwilles3
Reply To: Whole Brain Radiation for brain mets – is this the

Thank you Certain Spring - it helps to hear from people who have had it. So many people tell me not to have it done because of the side effects - but so far I haven't found a radiation oncologist who will do anything except WBR. I am anxious for Monday morning to find out what they have to say.

Sharon

Dr West
Reply To: Whole Brain Radiation for brain mets – is this the

I think it's important to recognize the source of the information you're getting. There is certainly reason to be concerned about the possibility of cognitive problems with WBR, but many people are pretty close to irrational about the risks, as if it's lobotomizing patients. The fact that the people who are actually the most experienced and knowledgeable professionals are all saying the same thing should count for a lot. In my mind, that should count for more than the recommendations that are based on anecdotal cases of someone they heard about online who had a problem. And bear in mind that sometimes it's the cancer itself that can cause lots of problems in the brain, so there can be rather challenging complications of NOT treating the brain metastases optimally...not just side effects from the treatment itself.

Parenthetically, it's probably worth knowing that there is a growing view that progression in the brain only on an EGFR inhibitor or an ALK inhibitor like XALKORI (crizotinib) doesn't necessarily count as progression on the agent, since they don't really get into the central nervous system well. There's a growing body of data suggesting that patients with good control of the disease everywhere outside of the brain, but progression within the brain only, can do very well with radiation to the brain and ongoing targeted therapy...often without progression again for a long while.

-Dr. West

+++++++++++++++++++++++++
Dr. Howard (Jack) West
Medical Oncologist
City of Hope Cancer Center
Duarte, CA

Founder & President
Global Resource for Advancing
Cancer Education

wierwilles3
Reply To: Whole Brain Radiation for brain mets – is this the

Thank you very much, Dr. West. What you say makes perfect sense, and it helps allay some of my fears. Funny you should mention the lobotomy - some of the stories make it sound that bad. It seems like people remember the anecdotal cases the most.

My oncologist, whom I trust deeply, recommended, as you, to stay on the Xalkori because it is working, and to take care of the brain mets. I think I can go to the radiation oncologist on Monday much more informed and with more confidence.

Sharon

tammy11201959
Reply To: Whole Brain Radiation for brain mets – is this the

Sharon, my thoughts are with you on Monday!

My husband did have at least eight mets to the brain, which is how we discovered he too had adneocarcinoma of the lung. When it was discussed to do the WBR, I of course read everything I could find about the topic, I was terrified, until I read one post from a man who said, what is the alternative? As it turned out, my husband was exhausted from it, but it bought him a lot of time, and in the end, he told me he would have made the same choice. And unusual side effect my husband had, which the radiation oncologist said was caused by the WBR. Shortly after the treatments ended, I noticed his entire forehead looked really dark. I figured that it was just like a sunburn, so I got him a buff puff. One day as we were sitting in a patient exam room with the bright fluorescent lighting, I looked more closely, and he had about 12 billion blackheads! I know I am exaggerating, but his entire forehead was covered. So after leaving the office, I rushed to the store and bought boxes of Biore' strips! The poor guy, I had his forehead plastered with them! It took several treatments and buff puff scrubbing but we solved the problem. Funny thing about my husband, he couldn't stay still long enough for a Biore strip to dry properly, but could lay still for an MRI. All in all, much later he began to have balance problems, but it was all worth it.

Tammy

wierwilles3
Reply To: Whole Brain Radiation for brain mets – is this the

Thank you so much Tammy!