My adenocarcinoma (BAC) has an EGFR mutation on exon 19. This was discovered after I had 3 rounds of doublet platinum therapy and radiation therapy, and a couple of LL wedge resections. I was then put on Tarceva for 4 months with no results except that the tumors got slightly larger (no side effects, either). I assume that is primary resistance. Tried Alimta after that for 3 months, and the tumors stabilized so I went off Alimta. I had CT scans quarterly, then semi-annually for about 3 years, with no treatment and no change in tumor size. Tumors have recently been shown in right lung and I am on Tarceva again, with dreadful but bearable side effects this time. How likely is it that Tarceva, once having failed me, will be effective now? If it doesn't show results after my next CT scan (next week), what are the next options? More Tarceva, or something else? I don't hear a lot about primary resistance and what the options are. Thanks very much for your help. You guys are great.
Nan
Primary resistance to Tarceva - 1268005
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Reply # - January 11, 2015, 06:22 AM
Hi Nan,
Hi Nan,
It doesn't seem too likely that Tarceva would suddenly begin to work, although of course anything can happen. Dr. West discusses that subject here and in the comments to this post, where he states:
JimC
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Reply # - January 11, 2015, 11:14 AM
I agree that it's hard to
I agree that it's hard to envision that Tarceva (erlotinib) will be more successful the second time around. I think the questions are both why an agent on which slow but steady progression was seen the first time would be selected for repeat treatment, but also why treatment has been initiated in the face of what sounds like very vague progression. If there, is it clinically significant? If clinically significant, it there reasonable reason to believe that any available treatment will change the outcome?
To me, it seems questionable that there is anything more than barely perceptible progression, and even more dubious that further treatment will change the trajectory of the disease. I can't tell whether the Alimta (pemetrexed) made any difference -- it sounds like your cancer can easily show no change over three months whether on treatment or off.
If Alimta is felt to have helped, then I don't see why that couldn't be employed again. By the same token, if any chemo had been helpful, an agent like Taxotere (docetaxel) may also be helpful (with or without the newly approved anti-angiogenic antibody Cyramza (ramucirumab). An immune checkpoint inhibitor like Opdivo (nivolumab) or Keytruda (pembrolizumab) could also help if one becomes approved and commercially available.
But the top questions in my mind are whether there is enough progression to justify treatment, and then whether the treatments are likely to change the trajectory. Finally, is Tarceva, an agent on which only progression has been seen and is now poorly tolerated, truly the best option? I can't see how that is the case.
-Dr. West
Reply # - January 11, 2015, 04:29 PM
Thank you very much, Dr. West
Thank you very much, Dr. West. I think progression was assumed because I developed four small new tumors in my right lung (lower and middle lobes) and one new one in my LL lobe since my last CT. Nonetheless, I appreciate your comments because I see my onc this week and you have pointed me in the direction of meaningful questions to ask.
The original cisplatin-etopiside didn't show any positive results but did result in a pulmonary embolism which I'd of course prefer not to repeat. I'll ask him for another recommendation besides Tarceva.
Jim, thanks very much for the excerpt from Dr. West--it was also very informative. Will let you know what my onc says.
Nan
Reply # - January 11, 2015, 08:28 PM
I don't want to overstate
I don't want to overstate things -- I shouldn't presume to know more than the docs directly involved in your case. I think these are appropriate questions to ask.
Good luck.
-Dr. West
Reply # - January 11, 2015, 08:42 PM
Not to worry. I greatly
Not to worry. I greatly appreciate your straightforwardness and candor. I won't quote you, but I will use your comments to inform and refine questions I have. I didn't think you were presumptive at all--that's not how I read your remarks--just as additional information to consider. Thank you. I think we all value your candor, which can be difficult to find among professionals sometimes.
Reply # - January 15, 2015, 03:03 PM
CT compared with those of 2
CT compared with those of 2 months ago, when I restarted Tarceva: LLL pulmonary nodule adjacent to L hilar staples now 6 x 5 mm, previously 15 x 9 mm. L cardiophrenic angle lymph node now 7 x 6 mm, previously 17 x 11 mm. Right LL pulmonary micronodules also smaller. Stable post-surgical changes of prior UL lobectomy, LLL superior segmentectomy, and bilateral mastectomy earlier this year.
Continuing on Tarceva despite side effects, which we are trying to control with helpful OncNP. Pleased with these results.
Nan
Reply # - January 15, 2015, 09:19 PM
As you should be! Sounds
As you should be! Sounds great -- congratulations!
-Dr. West
Reply # - February 18, 2015, 11:04 PM
I think that my heading
I think that my heading (primary resistance) was in error. I may have seemed resistant in 2010, but the results of my last CT would seem to contradict that. At any rate, I am not due for another CT until mid-April, but the side effects of 150 mg of Tarceva are getting more troublesome--rash comes and goes on scalp, back, arms, legs, shoulders, but is mostly present. Extremely dry skin, flaking and coarse. Four fingernails and two toenails are trying to disassociate themselves from me so far, very painfully and with apparent infections. I am cold all the time (unusual for me), nauseated and having diarrhea several times as week. My eyelashes are curling inward and scratching my corneas, and have to be removed by my opthalmologist (my AMD prohibits my using tweezers that close to my eye). My hair is thinning noticeably (well, noticeably to me and the woman who cuts my hair). I take warfarin and self-test for INR, which has skyrocketed and it's taken a while to bring it back within range. Had daily bloody nose and nasal infection for a month.
Symptom treatment has included clindamycin gel for nails, fluocinonide gel for scalp (and other) rash, mupirocin ointment for nasal infection, heavy-duty moisturizers for my entire body, immodium and compazine, crackers and Tums (appropriately spaced) for acid indigestion (oh, I miss my Nexium).
The book on skin and cancer by Dr. Lacouture has been a great help; a local dermatologist and my onc's NP have been a little help. I have been prescribed an anti-nausea patch which I will consider taking after I read up on the drug interactions. I feel I have been largely on my own with regard to checking for drug interactions. Thank heavens for the internet and for GRACE.
Question: Would it make sense to ask my onc about reducing the dosage of Tarceva? Have you heard of anyone taking 150 mg every other day, or 2 days out of 3? I just received a month's worth and my frugal nature is appalled at the idea of not using it.
Nan
Reply # - February 19, 2015, 08:08 AM
It's very reasonable to try
It's very reasonable to try dropping the dose if the side effects are at the upper limits of what's tolerable.
Alternative dose schedule, such as taking higher dose but skipping days, is a reasonable idea but hasn't been studied the way that a straight schedule of 100 mg or less daily has been evaluated.
Good luck.
-Dr. West