My father diagnosed 4/2011 nsclc squamous cell (pancoast tumor). He has never been tested for gene mutation. Had the pancoast tumor URL with spread to right adrenal gland. He has been through 3 rounds of chemo with erbitux/navelbine being the combo that worked best. His 4th line of Taxotere alone was stopped after scans on 9/19/13 showed progression. He has been in the hospital for 2 weeks bc he fell and they discovered fluid on his lung. He was up and about driving himself and everything the day before he fell. Now he is weak and can hardly walk. He is negative for lepto. Had a CT scan yesterday for palliative radiation and showed spread to the liver and one lymphnode. Dr. says he is too weak for chemo. The same Dr that tried to send him home last week on hospice saying he had lepto. My mother insisted on the spinal taps and they were negative. (his facial drooping is from horners not lepto. He was fine before he went into that hospital. They have added so many meds including seizure meds when my father has NEVER had a seizure. Just seeking advice because we aren't ready to give up and I personally feel like tarceva could least be tried. (he was supposed to start gemzar last week)
Reply # - October 17, 2013, 11:15 AM
faith11, I'm very sorry your father is in such bad shape. With cancer that isn't responding to traditional chemo it's very likely he won't respond to other traditional chemo such as gemzar. It's typical to have decreasing response to chemo with progressing lines of treatment so it makes sense to not try another such as gemzar.
Too it's easy to believe that after a fall one would experience other problems that become a downward trend in one's health. Hospice, started early enough can stop that downward trend and help bring back the stability your dad was enjoying, even to the point of going off hospice and trying tarceva.
With that said a second opinion is very appropriate when your trust in his care is in question, even if it is to agree with a prior treatment suggestion. This is an excellent post on the subject of second opinions, http://cancergrace.org/cancer-101/2011/11/13/an-insider%E2%80%99s-guide…
I hope this helps,
Reply # - October 17, 2013, 07:18 PM
It's hard to comment on the probability of benefit in patients who have a marginal performance status. It's certainly reasonable to try Tarceva (erlotinib), though the likely benefit in someone who is very debilitated is typically very modest, if any, unless they have an EGFR mutation. Many Pancoast tumors are squamous cell carcinoma, for which testing for mutations isn't the standard of care at this time, so that might be why it wasn't done. If he has a non-squamous NSCLC, it's very appropriate to test to ensure that he doesn't have an EGFR mutation or ALK rearrangement, since people may respond dramatically to targeted therapies against these markers and improve dramatically.
In truth, though, such scenarios are the best case scenario but not a likely one. It's very possible that many very thoughtful oncologists would carefully review his situation and feel he's more likely to be harmed than helped by further treatment. Given your doubts, I agree that a second opinion may be helpful to either provide a new alternative to treatment or corroborate his current oncologist's view.
Finally, I'll say that a spinal tap (lumbar puncture) is very far from a perfect test to rule out leptomeningeal carcinomatosis (LMC). Many people have one or more negative spinal taps and actually do have LMC that just happens to not appear on the sample tested. LMC remains very high on my list of potential explanations for a dramatic sudden decline without obvious imaging changes in a lung cancer patient, so I can absolutely understand the reasoning behind the presumed diagnosis of LMC.
Reply # - October 18, 2013, 05:13 AM
Thank you both for your response. My father received palliative radiation yesterday to the tumor in his chest. He will discharged from the hospital today and be going to a swing bed program. His Dr says if he gets stronger he will start a new treatment although he also says he just doesn't feel that he will get any stronger. He said my father is tired and weak because he is sick and that the cancer is making him this way. I just did not think his cancer was bad enough to make him this sick already.
Reply # - October 18, 2013, 07:57 AM
faith11, I'm very sorry that you are going thru this. I know how scary it is.
Unfortunately, the cancer can make him sick very quickly. My dad was similar to yours and was actually doing pretty well then very suddenly got very, very ill very, very quickly. I truly hope this is not the case with you dad and that he can turn around.
Reply # - October 18, 2013, 08:37 AM
Thank you Sherry. I am also hoping that my father will turn around. He has been through 2 MRI's, one with contrast, 3 spinal taps, EEG testing, fluid drained from his right lung, another CT scan, palliative radiation & being treated for a blood clot in his stomach all in 2 weeks time since being hospitalized for what they originally thought May have been a stroke. (further testing showed no signs of stroke) I am reallyy
Reply # - October 18, 2013, 07:16 PM
In patients having a difficult time on cancer treatment and/or with some other noncancer-related problems, it can be hard to tease apart what is causing what and if things are reversible. In these situations, it can often be helpful to just step back, hold off on further interventions and just see if someone pulls out of a tailspin, perhaps because of a transient noncancer issue or because they were caused by treatment side effects, or declines further, in which case we can conclude that it's most likely that the cancer is the cause.
But stepping back and seeing if things improve with support, TLC, and time burns no bridges.