Tough decision between a whole brain radiation vs occipital craniotomy

btlaw123
Posts:45

My wife is experiencing a second time brain tumor recurrence. She had her first occipital craniotomy back in 2011. On late Oct 2013 she began to experience different vision artifacts and visual migraines but with no pain. Radiation oncologist had a hard time differentiating between radiation necrosis or cancer recurrence. In 2015 the visual migraines began to come with headaches and the headaches later became intolerable. Finally, on Dec 12, 2015 a second occipital craniotomy was performed. Among the massive necrotic tissues, the surgeon found viable cancer cells. Meanwhile she has also developed acquired resistance to Tarceva which she has been taking since 2011.

Now almost three years later from Dec 2015 her MRI on 0ct 3, 2018 revealed interval growth again in her right occipital lobe suspicious for recurrent tumor. Enhancement of the ependymal layer of the occipital horn of the right lateral ventricle is suspected to have transependymal extension of tumor.

Her medical oncologist and the radiation oncologist are at odd with what is the best approach for this localized cancer met from her lung cancer. She is currently on decadron to reduce fluid pressure in her brain to buy time for a best final decision. Any comments on experience in dealing with the two fronts of her battle is appreciated.

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General Lung/Thoracic Cancer

Reply # - October 7, 2018, 01:35 PM

btlaw123
Posts: 45

Sorry I have neglected to mention that since the first of 2018, she was given 6 round of carbo/alimta chemo and afterward since 4 cycles of Alimta maintenance. Initially based on July 2018 CAT she responded well to the doublets and was established as NED (CAT was clear). But now barely two and a half months into her Alimta maintenance she can feel that her supra-clivical lymph node (above her left collar bone has enlarged to feel again and easily felt by touch. Looks like the Alimta is not controlling her cancer too well! God have mercy!

Reply # - October 8, 2018, 10:39 AM

JanineT GRACE …
Posts: 657
GRACE Community Outreach Team

Hi btlaw123,

I imagine you're not looking for more of the same from me so I'm linking to a couple of posts one from by Dr. West on using pulsed tarceva. Notice in the second to last paragraph Dr. West talks about using this method for a woman with brain mets successfully. When the post was written this was a new practice. The 2nd is from ncbi on a study of those who develop a resistance but benefited from pulsed tarceva for brain mets. It appears that if the cancer cells are from the original brain met and tarceva wasn't penetrating the brain at normal doses the cells are still receptive to tarceva when pulsed. That seems to suggest if tagrisso could penetrate the brain and the cancer cells in the brain haven't acquire resistance then tagrisso may work at regular dosing.

https://cancergrace.org/post/effective-treatment-some-patients-leptomen…
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC5093174/

I joined GRACE as a caregiver for my husband who had a Pancoast tumor, NSCLC stage III in 2009. He had curative chemo/rads then it was believed he had a recurrence in the spine/oligometastasis that was radiated. He's 10 years out from treatment.

Reply # - October 9, 2018, 11:37 AM

JanineT GRACE …
Posts: 657
GRACE Community Outreach Team

I think that question is beyond our expertise. But it does sound like the tumor has invaded the ventricle by transependymal extension, meaning through the lining of the ventricle. Since the ventricle contains CSF it would suggest it is or likely to be circulating through the CNS. That would need to be confirmed by your wife's neurologist or oncologist. Any time lung cancer metastasizes in the brain it's expected to cause destructive symptoms if left untreated. And yes if cancer circulates through the CSF at some point it's expected to cause ambulatory and neurological symptoms if left untreated.

I'm so very sorry about your wife's situation. Will she try pulsed doses of tarceva or regular doses of tagrisso?

I joined GRACE as a caregiver for my husband who had a Pancoast tumor, NSCLC stage III in 2009. He had curative chemo/rads then it was believed he had a recurrence in the spine/oligometastasis that was radiated. He's 10 years out from treatment.

Reply # - October 9, 2018, 11:56 AM

btlaw123
Posts: 45

Thank you so much for your tireless response. She is a walking miracle for the past 8 years despite going through a lobectomy and two occipital lobe craniotomies plus one SRS and 12 fractionized IMRT. But now I am afraid she could be at her last leg of her cancer battle. Tomorrow we have a neuro surgeon consultation appointment. Not sure what would be her next treatment of choice. She just started Tagrisso 80mg daily 10/08/18 even thought she is T790M negative. The oncologist want to try since Alimta maintenance is beginning to be ineffective. Tarceva for sure not going to work because she had developed acquired resistance around later part of 2017 therefore she was given carbo/alimta followed with alimta maintenance. Tagrisso might not work either since it is a similar drug as Tarceva but the oncologist is put her on for the month or two while they focus on her brain mets situation. She is extremely anxious and afraid of the outcome and I am totally scared of the consequence.

Reply # - October 9, 2018, 01:03 PM

scohn
Posts: 237

So sorry to hear of everything you and your wife are going through. While I am also often filled with fear, I can only imagine what it must be like for you. I hope that it helps at least a bit to know that there are others out there sending you and your wife our best hopes and thoughts and prayers. - scohn

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