March 18, 2018 at 1:24 am #1294108
song1234
Hello everyone, my father was diagnosed with stage 4 NSCLC with mets to his bones and brain. He was on Tarceva for about 3 months (he felt better within couple of weeks after taking Tarceva) Scans after two months showed “mixed response” pretty much stable disease in his lungs and brain but more growth in his bones. After another biopsy they did not find any T790M mutation but he does have the EGFR(L858R)mutation,his doctor switched him to Tagrisso anyway hoping it would work better for his brain. He had another scan approx 6 weeks after being on Tagrisso and the results are pretty much the same, stable disease in the brain more growth in the bones. After he made the switch to Tagrisso he start feeling a little worst every week, it wasn’t anything dramatic but it’s something that I and other family members can notice, he just seems more tired and the appetite also got worst. It could be the side effects due to the Tagrisso but our main concern is that for some reason the Tagrisso might not be as effective for him as Tarceva. He was very weak and fragile when he first started on Tarceva but was actually able to gained back some weight in the 3 months of taking it but now he is losing weight since taking Tagrisso.
I understand that Tagrisso supposed to work for EGFR patients even without the T790M but I also saw some earlier studies that indicates the response rate in T790M-negative patients is only around 25% which makes this whole thing very confusing, I could be wrong but I think many studies and trials have shown that the first gen TKIs like Tarceva and Iressa have very high response rate in EGFR(exon 19 and 21)patients, something in the 60 to 70% range so my question is does it make any sense for someone to stop Tagrisso and go back to Tarceva if the condition continue to deteriorate and given the fact that he doesn’t have the T790M and was originally responding ok(tho not perfect)to Tarceva? Sorry for the long post, any advice will be greatly appreciated!
March 18, 2018 at 8:04 am #1294110
JimC Forum Moderator
JimC Forum Moderator
Hi song1234,
Welcome to GRACE. I’m sorry to hear that despite the good aspects of your father’s response to therapy (stable disease in the lung and brain), he is feeling worse than when he was taking Tarceva. It’s difficult to say whether that is because of Tagrisso, progressing disease or some other factor. It’s certainly possible to return to Tarceva to see if that is the difference, but that doesn’t address the issue of progression in the bone metastases.
Progression in the bones is a bit difficult to judge, because the presence of the cancer deteriorates the surrounding bone and some of what is seen is that damage. If there are new bone mets, however, that makes it clear that the cancer is progressing. If there is clear progression, then your father’s doctor may wish to change to standard chemotherapy, assuming your father feels well enough to tolerate it. Another option would be to consider radiation to the brain and/or bones, while continuing an EGFR inhibitor.
It’s a complex set of circumstances, requiring a thorough discussion of options with his oncologist. In addition, when a patient is at a significant treatment decision point, a second opinion also can be valuable.
JimC
Forum moderator
Jul 2008 Wife Liz (51/never smoker) Dx Stage IV NSCLC EGFR exon 19
4 cycles Carbo/alimta, 65% shrinkage
Tarceva maintenance
Mar 2010 progression, added Alimta, stable
Sep 2010 multiple brain mets, WBR
Oct 2010 large pericardial effusion, tamponade
Jan 2011 progression, start abraxane
Jun 2011-New liver, brain mets, add Tarceva
Oct 2011-Dx Leptomeningeal carcinomatosis; pulsed Tarceva
At rest Nov 4 2011
Since then: http://cancergrace.org/blog/jim-and-lisa
March 18, 2018 at 9:53 pm #1294115
song1234
Hi JimC, thank you for your quick response. My father’s oncologist did suggested chemo but unfortunately he couldn’t tolerate it after the first(low dose) infusion so chemo is clearly out of the question for now. He did received radiation treatments to the bones but it’s pretty clear that he is having new bone mets after the radiation treatments.
I also brought up the idea about the possibility for the combination of two different EGFR TKI, but his oncologist’s response was they won’t do that outside of a clinical trial and she seems to think even that probably won’t help much other than just adding more toxic to the patient’s body and going back to Tarceva is not going to help either, now this is where I’m not so sure I agree 100% with her. I can totally understand the combination might not work at all, but I just couldn’t agree on giving up something especially someone’s life without even giving it a try. I think his oncologist was acting in good faith and just doesn’t want him to suffer more side effect from those drugs, but I think we really should get a second opinion about this.
Thank you very much for your advice and thoughts