jls57
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Posts:22
My mom completed 15 treatments of WBR at the beginning of January and recently had her follow up MRI. She had a good response to the radiation and the radiation oncologist said it was the best possible report. My question is how long can we expect the radiation to keep the cancer under control in the brain? She is currently on a low dose of Afatinib as she was not eligible for the AZD 9291 trial due to the lack of T790M. Her onc also wanted to try her on Afatinib before chemo because she is EGFR+ with the 19 deletion, which supposedly has a better response with Afatinib. She progressed on Tarceva so this is her third line treatment. Thank you so much for your time and invaluable knowledge.
Jls
Forums
Reply # - April 24, 2014, 04:00 PM
Reply To: Long term effectiveness of WBR
Dr. West's reply here suggests a 2 to 3 years seems to be the new norm, "To be honest, your husband’s course is remarkable in every way. People alive 7 years after having brain metastases from lung cancer are exceptionally rare, and we’re only beginning to see enough people alive 2-3 years later to learn that several of these people develop degenerative brain problems as a long term side effect of the radiation. Up until the last few years, people didn’t live long enough to experience long term side effects from WBR for brain metastases." http://cancergrace.org/topic/wbr-improvement-after-late-toxic-symptoms
There are and have been several members here on Grace who have done well 2 and 3 years out from wbr. One of our members went back to instructing as an English fellow at Oxford after wbr, which speaks to fears of dementia type side effects. Most people do well.
Certain Spring often shared her experience, "I had WBR on dx, aged 46. The fatigue peaked at 6-8 weeks after the treatment ended. I slept for several hours each day, usually from about 4-6pm. I guess everyone’s definition of “extreme” will differ, but that was extreme by my standards. I could not read or concentrate, and I certainly didn’t want to speak to anyone on the phone.
"After a couple of months I started to feel better, but slowly. I am now two years out and feel as good as I have done since dx." http://cancergrace.org/lung/topic/side-effects-of-wbr/#post-11179
There are also options if the tumors come back. We have an excellent library of blog/posts and interviews with specialists that can offer more info. Start at the top of the page in the drop down menu, 'General cancer info and click on radiation onc" or click here, http://cancergrace.org/radiation/ on the left of the page you can choose more specifics at archives.
I hope your mom does well for a very long time,
Janine
Reply # - April 24, 2014, 07:09 PM
Reply To: Long term effectiveness of WBR
As Janine noted, we certainly see some people who receive WBR do well for years afterward, and in fact I've recently seen a patient reach a 5 year anniversary after being diagnosed with EGFR mutation-positive NSCLC and brain metastases, starting on WBR as her first treatment. The control in the brain can last for years, though this same patient developed a few new metastases right around her 5 year anniversary. Other patients of mine have gone years and never developed recurrence in the brain.
I must confess to being less optimistic than your oncologist about the likely value of Gilotrif (afatinib) in someone whose cancer has already progressed on Tarceva (erlotinib). The response rate in this setting is less than 10%, and few responses are long-lasting. However, there are exceptions who do very well, and I would love to be wrong.
Good luck.
-Dr. West
Reply # - July 20, 2014, 08:30 PM
Reply To: Long term effectiveness of WBR
Following up on this post from a couple of months ago, I am interested to know how to find the study that indicates the response is less than 10% in patients that have progressed on Tarceva. I do not think my mom is benefitting from Afatinib and would like to ask my mom's oncologist to try a different avenue or re-biopsy her for the T790M mutation. He seems to be more responsive if I have the research to back when I am inquiring about her treatment plan. She had a biopsy in December which did not show the mutation at the time. In fact, she showed no resistance mutations. How likely is it for a person who is a EGFR+ with a 19 deletion to be T790M+? Judging from the posts you have about whether or not to rebiopsy I would think she would be a good candidate as she would stand to benefit tremendously from AZD9291 if the biopsy were to be positive for the mutation.
Thank you in advance for your time.
Jls57
Reply # - July 20, 2014, 08:45 PM
Reply To: Long term effectiveness of WBR
Hi jls57,
You can see the results of the LUX Lung-1 trial here: http://www.clinicaltrials.gov/ct2/show/NCT00656136?term=LUX+Lung-1&rank… and read Dr. West's discussion of that trial here: http://cancergrace.org/lung/2011/10/23/lux-lung-1-results-in-detail/
It is certainly possible for a patient with an Exon 19 EGFR mutation to develop a subsequent T790M mutation.
JimC
Forum moderator
Reply # - July 21, 2014, 06:08 AM
Reply To: Long term effectiveness of WBR
I've actually been thinking about writing a post about people receiving Gilotrif (afatanib) after Tarceva (erlotinib), which I see happening all the time online and in people coming in for second opinions with me. I must confess that I don't see much about the 7% response rate or median survival trending worse than placebo that makes me think that's a helpful approach for the vast majority of patients -- you see the same response rate for retreating patients with Tarceva after being off of it for a while. To me, it's more reflexive action than evidence that leads to the decision to use afatanib here.
I certainly understand that reflex, or desperation, but there is far more reason to be hopeful about AZD9291 or CO1686 in acquired resistance. Those are being studied almost exclusively in patients with a T790M mutation, which is seen in about 60% of patients who previously responded well to an EGFR inhibitor and then develop acquired resistance.
Good luck.
-Dr. West