Hello Dr. West and Grace community,
My husband is a 34-year old, never-smoker, stage IV patient (bone and lymph node mets). He was negative for targetable mutations but high positive (80%) in PD-L1 expression. He was put on Carbo-Alimta-Keytruda 9 months ago as his first-line treatment. He is now on Alimta-Keytruda maintenance. He also gets monthly XGeva shots. He has done remarkably well on this treatment with essentially no active cancer in his body at this time and his lung tumor dissolving.
There is one exception to the otherwise good picture. His PET/CT scan 3 months ago showed a right superior paratracheal lymph node that had jumped a lot in SUV uptake, from 4.6 to 11.3. At that time, the plan was to wait in case it was just inflammation from Keytruda. There was no enlargement either, so it made sense. Fast forward to his latest scan, this same lymph node has now grown from 1.2 to 1.9 cm and has further jumped in SUV uptake from 11.3 to 12.7. So much more likely a local relapse. Everything else looks good on scan. His oncologist's approach was again watchful waiting. He thinks a 7mm growth in 3 months is not that significant and that it's not likely to grow much more or cause trouble. Interestingly, he thinks there's still a chance it might resolve with the current treatment. He did say we would consider a mediastinoscopy with biopsy and possibly some local radiation if it continued to grow. But for now, nothing until the next scan in another 3 months. Since everything else looks good, the plan is to keep him on Keytruda (no objection there). Alimta will probably be dropped at some point in the coming months.
My question is: can we afford to wait at least another 3 months, or should we be speeding up the mediastinoscopy? Could this be anything else other than local relapse at this point? He was sick with a virus recently, but symptom-free for at least a week prior to the scan. And is there still a chance of resolution with the treatment?
Thank you so much!
Reply # - March 10, 2018, 06:09 AM
Hi christi,
Hi christi,
Welcome to GRACE. It's good to hear that your husband has responded so well to treatment, and we hope that continues for a long time.
With stage IV lung cancer, cancer cells have entered the bloodstream, which eventually can cause distant metastases such as your husband's bone mets. Although we hope that systemic therapy such as chemotherapy and immunotherapy eradicates all cancer cells from the body, often there are some remaining. Continued systemic therapy can keep those cells under control so that there is no growth and no new tumors or metastases develop. Significant new activity tends to lead to a change of therapy, but oncologists often prefer to stay the course when progression is slow.
Local therapy such as surgery or radiation is usually not favored, since treating one location doesn't solve the systemic problem, and each such procedure carries a set of risks. In some circumstances, when there is only one active location, local therapy may be used. You can read more about that issue if you search GRACE for "oligometastasis".
Apparently, your husband's doctor wants to be certain, in light of the small growth and prior infection, that the lymph node represents cancer before taking further action. In that context, a waiting period of three months is a reasonable course of action.
JimC
Forum moderator
Reply # - March 10, 2018, 10:12 AM
Jim,
Jim,
Thank you so much for your response!
Everything you wrote makes sense.
A couple of things to clarify from my original post (I wasn't able to write more details due to character limits):
1) When I say my husband was sick with a virus, I don't mean anything exotic. Just one of the common seasonal viruses going around. It ran its course over a couple of weeks and then his symptoms went away. I'm pretty sure he was symptom-free for several days before his latest scan. I don't know if that would have made a difference with the offensive lymph node.
2) This lymph node never fully resolved like most others have. There was some initial shrinkage and reduction in SUV uptake at the beginning of treatment, but as soon as the second follow-up scan came along, it had already jumped in activity by a good deal (from 4-something to 11-something). By this latest scan earlier in the week, it had also grown in size again and still jumped to 12-something in SUV uptake. So it seems like it's being very persistent all along. I'm just scared that it might spread elsewhere if we don't do something about it fast enough. Making spot treatment an impossibility at that point. No one has a crystal ball of course, but we've had great response everywhere else and I would hate for one lymph node to cause a bigger relapse if it came to that because we let it be. Of course I'm just a layperson, not a medical professional. I could be completely wrong or over-stressing about it.
We will likely make a follow-up appointment with my husband's oncologist to get answers in more detail about this. Thanks again for your input in this!
Reply # - March 10, 2018, 10:13 AM
I just meant to add, I will
I just meant to add, I will be doing a search for 'oligometastasis' to read more about it. Thanks for suggesting it!
Reply # - March 11, 2018, 08:56 AM
Hi christi,
Hi christi,
As far as your first point, it is not unusual for an infection to linger after symptoms have disappeared. That's why patients are told to finish an entire course of antibiotics rather than stopping once they feel better. That being said, the only way to know for certain whether the lymph node is cancer is via a biopsy.
As you may have read by now, the reasoning you state in your second point is exactly the thought process used by oncologists in the oligometastasis situation. The theory is that the cancer cells present in the sole metastasis may be the only ones remaining in the body. If so, there is good reason to eliminate those cells with surgery or radiation. But if there are other cancer cells in the bloodstream, which haven't yet formed nodules visible on a scan, then local treatment can be an exercise in futility, because more nodules will eventually appear. In your husband's case, the presence of the bone mets tells us that cancer cells entered the bloodstream. What we don't know is whether his systemic treatment has eliminated all cancer cells other than those in the lymph node. Most of the time systemic lung cancer treatment is not quite that effective, but it does happen. Definitely a conversation worth having with his oncologist.
JimC
Forum moderator
Reply # - March 11, 2018, 09:54 AM
Thank you so much for your
Thank you so much for your response, Jim!
I so hope you're right on point #1!
About point #2, you are right. I understand the challenge and nobody has a crystal ball, unfortunately. I do agree with you that it's worth having a follow-up discussion about it because, from our point of view, taking our chances with a minor surgery is worth it if that means it could give him a chance of being NED/stable for hopefully a prolonged period of time, potentially. Seeing as there's been a clear improvement between scans otherwise, which we mainly attribute to the immunotherapy, and immunotherapy responders often tend to do well for long periods of time, sometimes even VERY long periods of time. My biggest concern is mutating cells and trying to stop them from spreading to other parts, if possible. Which, like you said, sometimes can be done, while other times it's an exercise in futility, but only time will tell which it is. To this effect, I wonder if having a liquid biopsy at this point might shed any light. Also something to get our oncologist's opinion on. One other thing the onc did say was that, if we were to do a mediastinoscopy, he would want my husband to have a 'proper' CT scan first to take a clear look at the lymph node as PET/CTs have relatively low resolution. So I wonder what information he may be able to gather from a CT scan that the PET/CT isn't able to offer and how that could change the approach. Again, he was very happy with the latest scan and almost not concerned about the presence of that one active spot. In no rush to do something about it immediately and he still hopes the immunotherapy might get to it.
These are just my musings. Don't feel obligated to respond :)) Thanks again for your input!
Reply # - March 11, 2018, 10:39 AM
I think your husband's doctor
I think your husband's doctor may want the enhanced resolution of the standalone CT to see if there is anything else that appears enlarged, so that it's clear what should be targeted if a mediastinoscopy is performed.
JimC
Forum moderator