I have been living for many years in Austria (Europe) but I come originally from Iran, I am a 45y female, non smoker and we had never any cancer case in our family.
01/2014: I fell down and broke my spine; surgery showed bone metastasis in the 8. spinal column. Cancer cells were removed during surgery then spondylosis T5-T8.
01/2014 : Biopsy from lung, diagnosis: stage IV NSCLC with EGRF exon 21 (right upper lung: 2cm size)
02/2014: started GILOTRIF 40mg
02/2014: 26 cycles of radiation of spine bones
04/2014: reduction of tumour size to 1cm, no mets anywhere, even not on Spine.
08/2014: size still 1cm but reduction of SUV from 8 to 3; no mets anywhere
10/2014: surgery: upper right lung with tumour was removed (VAT lung surgery); 15 lymph nodes removed (only 1 of them was with cancer cells which we didn't see in the PET).
I didn’t do any adjuvant chemotherapy. I made a one month break with GILOTRIF because of surgery. After lot of discussions with my Onc finally I started with GILOTRIF again.
01/2015: PET showed nothing; NED
04/2015 CT (thorax, abdomen) showed nothing; NED
07/2015 CT (thorax, abdomen) showed nothing; NED
At the moment I feel well and am in a very good condition. The next CT will be at the end of November.
1) Should I take this time a PET or MR to check my body after one year (after the last PET)?
During this year I only had CT of abdomen and lung and it didn’t show anything, even on spine bones, but what about my brain?
Should I do a CT, a MR of spine and a MR of brain?
In my case, only CT every 3-4 months is ok?
2) More important question for me: What about continuing GILOTRIF? I’m concerned about the possibility of resistance to the Gilotrif occurring.
Should I stop it for a while and see if it comes again? I have fear to have mets in the brain.
Or stopping now is for nothing after taking Gilotrif for 21 months? (the resistance is already existing). I should take it and pray that nothing comes for a while?
can u please reply briefly?
Thanks
NED for 21 months, stop GILOTRIF? 2 Questions to Dr West - 1271594
saralb
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Reply # - October 23, 2015, 12:09 PM
Dear saralb, thank you for
Dear saralb, thank you for sharing your extraordinary story. I am very happy to hear that you are doing so well such a long time!
I am sorry that I (and the other doctors on this site) cannot give you medical advice as to what you should do in regards to scans or treatment.
However, you ask a very important question which we can discuss, which is what to do when there is no evidence of cancer for a long time on a therapy like afatinib (Gilotrif)? Is it ever OK to stop it or should patients remain on it indefinitely?
The short answer is that we don't know when or if it is ever OK to stop. This needs to be a very individual decision between a patient and their doctor, taking into account the likelihood of recurrence and the burden of continuing. If a patient has few or no side effects and the cost of the medication is not an issue, I can't think of too many good reasons to stop. I have had patients who have been on another EGFR drug (Tarceva) for many years who recurred after stopping for one reason or another, so I know this is possible. As for the question about developing resistance, we don't know if intermittent dosing (stopping and restarting) would have any effect on resistance emerging and so the standard recommendation is to continue without break until progression.
If on the other hand the side effects detract from a patient's quality of life or the cost is doing the same (known as "financial toxicity"), then stopping might be something that could be considered. If the drug were stopped though I would want to do very careful surveillance to monitor for recurrence, and the patient would have to acknowledge that recurrence was a distinct possibility. Drugs like Gilotrif do not "cure" metastatic lung cancer, although some patients can have long term control.
I'm sorry if that isn't the answer you were looking for, but really there is no right answer for everyone here and what to do really depends a lot on what you, the patient, want to do.