five
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Posts:5
Greetings.
My stepmom has stage IV lung cancer with mets to the liver. It had also metastasized to the bone but was surgically removed in October 2014. She is asymptomatic with a performance status of 0-1. She had 1st line treatment with Alimta for just over a year and recently finished four rounds of second line treatment with Keytruda. Any idea what the 3rd line of treatment might be? Apparently there are no clinical trials available.
Thanks!
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Reply # - July 20, 2016, 03:19 PM
Also, I'm judging that she
Also, I'm judging that she has no EGFR mutation since she hasn't had Tarceva. It's also worth noting that her sister passed away from lung cancer. You might have guessed that it pains my Dad deeply to discuss it (and she won't do it in front of him), hence my inquiry. My stepmom is 64.
Reply # - July 20, 2016, 07:59 PM
Hi five,
Hi five,
Welcome to GRACE. I'm sorry to hear of your stepmom's diagnosis. Your post raises a few questions which may affect future treatment decisions. Was her treatment with Alimta effective, and did she stop Alimta due to progression of the cancer, or did it progress later? Has she shown progression on Keytruda, and is it growing slowly or more rapidly?
With stage IV disease, it's not usual to expect that all evidence of the disease disappears, although a small number of patients do achieve this status. Instead, tumor shrinkage or stability is a good result from treatment, and even slow growth with a tolerable agent may be acceptable. You want to get the maximum benefit from each treatment before moving on to another line of therapy. And with an immunotherapy such as Keytruda, some patients don't show benefit immediately, and some patients derive a long-lasting benefit after only a few treatments. So based on what you've said I wouldn't assume that it's time for a therapy change, especially since some oncologists change treatments at the first sign of even minor progression.
It would be helpful to know if her cancer cells were ever tested for EGFR, ALK or other targetable genetic alterations, as there are approved drugs such as Tarceva and Xalkori, as well as agents targeting other mutations currently being tested in clinical trials. Combinations of immunotherapy agents are also under study, and there are a number of conventional chemotherapy agents available if she needs to change treatments.
Let us know if you have answers for any of the questions I've raised, and we'll try to provide additional information.
JimC
Forum moderator
Reply # - July 21, 2016, 05:40 AM
Dear Jim, thank you for your
Dear Jim, thank you for your kindly response.
I suppose it's best for me to withdraw my question. Since I was presented with her diagnosis in January of 2015, I've done pretty well ferreting out information up until now (often gleaning valuable information from these very boards). Now I'm just overwhelmed with information overload and the situation has become too complex for me to understand with the limited amount of information I have. Really, I don't know much more than what I have disclosed.
In answer to your questions though, I don't know if she has been tested for EGFR/ALK. She was on Alimta for approximately 15 months before the tumors started to slightly enlarge and then 4 rounds of Keytruda before the tumors slightly enlarged again (and I don't know which tumors have enlarged).
My stepmom is actually scheduled to begin 3rd line chemo at the end of this month - I just don't know what kind of chemo it is. My Dad doesn't like to discuss the details and I can't pull her aside to ask because I live across the country (U.S.). I am under no illusion that her time is limited. I try to be understanding of my Dad's hesitation to discuss the matter due to the emotional distress this is causing him, but as he has requested me to be of assistance should things take a turn for the worse I have been taking it upon myself to stay prepared and informed. And after all, she has been my stepmom for most of my life and as an immediate family member (and the only one available in a position to help) I feel a tad ostracized.
Since my original post and more strenuous research, I realize there are a myriad of treatment options available and that without more detailed information, no one would really be able to pin down which one she will be getting. Aside from that, everyone reacts differently to treatment. I apologize for my lack of foresight when I posted. I was just frustrated and felt like I hit a wall. Essentially I guess I have.
Reply # - July 21, 2016, 05:19 PM
Hi five,
Hi five,
There's no need to apologize or withdraw your question. Lung cancer, whether from the perspective of a patient or a loved one, creates a difficult situation, one in which you can have a strong desire to help yet feel helpless. I'm glad to hear that your research has helped you discover additional treatments The pace of lung cancer research has quickened in the past several years, with not just new treatments but new theories of treatment being untilized, and there's no reason to think this won't continue.
I understand the difficulties you face in finding a way to be a part of the discussion regarding your stepmom's care. Perhaps she can authorize her oncologist to speak to you, so that you can discuss her treatment without the need for your Dad to be a part of that discussion.
In any event, since at the point of each treatment change you have described the progression as slight, I would caution against making changes too quickly. Dr. West has a good post on this subject here, in which he states:
"It’s not rare to have a situation in which our interval scans show a relatively minor change that you need to squint to see, but it may well lead us to overreact and make a change, because we’re predisposed to action, even when it’s just like changing lanes in a traffic jam and doesn’t get you anywhere any faster."
Best to you and your stepmom.
JimC
Forum moderator
Reply # - July 21, 2016, 11:00 PM
Hi Jim. I'm not sure why her
Hi Jim. I'm not sure why her oncology team is moving so quickly. Perhaps my Dad is being evasive (as is characteristic) or possibly minimizing the situation.
I would really, really like to know specifically what went awry with the Keytruda just out of scientific curiosity. It bothers me that I can't share these details as they would help so many others, especially as Keytruda has been so recently introduced for treating lung cancer.
If cancer ever happens to me I'll blog until my dying day.
Thanks so much for your replies, and have a terrific weekend.
Warm regards,
Five
Reply # - July 22, 2016, 05:18 PM
Hi five,
Hi five,
Yes, it's not really understood why some patients respond so well to immunotherapies, while others don't respond as well or not at all. That's a question that many researchers are striving to answer.
Enjoy your weekend as well.
JimC
Forum moderator
Reply # - July 23, 2016, 04:50 AM
Well Jim, if my Dad ever
Well Jim, if my Dad ever decides to discuss it, I promise to come back and update this thread. I suppose by then the scientists will have it all sorted out and we'll have a cure. ;)
Five