maintenance on pemetrexed post chemo and resistance to Gefitinib - 1260252

Hi App,

Welcome to GRACE. I'm glad to hear that you're tolerating chemo well and I'm hoping for good results from your scan.

What you've read about maintenance is correct - there is no consensus on whether it is necessary or helpful. Some oncologists feel that the main issue with maintenance is whether a patient has the opportunity to receive that treatment, whether immediately as maintenance or later at the time of progression. As long as a patient's condition doesn't deteriorate to the point where they cannot tolerate that therapy. In your case, you will already have received Pemetrexed, so that is not an issue if that would be the regimen chosen for maintenance.

I don't have specific information on the cost of Pemetrexed (and part of the cost is its administration which varies by institution), but it is a very expensive drug. I think many oncologists would view that as a significant factor in your decision if you're paying out of pocket.

JimC
Forum moderator

I agree on all counts. I do often recommend it for my patients doing well after 4-6 cycles of a platinum/pemetrexed (Alimta) combination, but it's far from a mandate. As Jim suggested, the cost exceeds $5000/month, with the amount varying from place to place. I think most oncologists who consider it a strong consideration would have a higher threshold for favoring it if a patient had to self-pay for it. Whether it's "worth it" if it's paid for by insurance vs. ''worth it" for $5-10,000/month out of your pocket are very different questions.

Good luck.

-Dr. West

Hello App,

It's not always (or even often) an easy call to make when deciding if a treatment is worth changing, when there's a mixed bag of responses as you've described, some lesions reduced, some stable and some showing growth. There are a host of considerations to take into account such as a person's quality of life on a certain drug and what options there are after moving from the current treatment. Dr. West gives an analogy about treatment that is borderline effective, sometimes bad brakes are better than no brakes.

I will ask a doctor to comment on your post.

Jim and I both understand completely how just how much this site means to you and all the other loved ones out there looking for the best options for their loved ones. There are no comparisons.

All best,
Janine

Dear App, the interpretation of scans is complex, but one immediate problem is that it appears that your mother's doctor is using PET/CT for routine monitoring of her response. PET scans really are not appropriate for monitoring routinely in lung cancer patients, and in fact Medicare has restricted all payment for PET scans to 4 in a patient's lifetime, restricting them to initial staging and for future treatment planning. This message has not gotten out for some reason, probably because PET scans are tremendous revenue boosters for small hospitals who own them. PET scans are incredibly sensitive but very non-specific, which means they can light up for many reasons that are not cancer. In addition, the brightness of the scan (FDG uptake or SUV) is commonly used to interpret cancer getting better or worse, when in fact the brightness is not useful in this regard and is highly variable for a number of reasons we don't need to get into here. The bottom line is, PET scans in this situation cause problems as often as they are helpful, and often are wrong so should not be used to tell if a patient is responding or progressing. A CT scan simply to measure tumor size is much cheaper and more useful.

That being said, without seeing the scan I cannot tell you whether things really look worse or not. If it is equivocal, though, as Janine pointed out we will often continue therapy until it becomes clear whether things are really getting better or not. True mixed responses, where some cancer improves while cancer worsens elsewhere, is rare but can happen. But especially for bone lesions, interpreting the scans can be complex and it often ends up being a judgment call about whether it is really worse or not. If the lymph node is new and growing, this could indicate progression although would not necessarily mean the cancer is going to grow faster or spread more than it has in the past.

If there is a need to switch therapy, then the choices would include a different chemotherapy such as Taxotere, a clinical trial either nonspecific or designed for patients with EGFR mutant lung cancer who have developed resistance, or to merely observe and treat her as symptoms arise (best supportive care). The choice would depend on the trials available to you where your mother lives and also what her goals are for continuing treatment. Let us know what she discusses with her oncologist!

I just wanted to underscore that I and many other faculty members have shared Dr. Pennell's thoughtful perspective that PET/CT scans are overused for assessing response to therapy, seem to lead to as many questions as answers (or inappropriate changes in therapy as often as appropriate ones), and less expensive CT scans provide a more reliable measure of clinically significant changes over the course of treatment. So really just echoing his wisdom here.

-Dr. West

What a wise decision by Medicare! It's decisions like this (and believe me, I've been on the "bad" side of rationing decisions by insurance companies) that are necessary to help cut costs and prevent the frequently-threatened (but only really delivered by private insurance) death panels. I've had 2 PET/CTs in 8 years (one at initial diagnosis to rule out mets before surgery, and one at recurrence to help determine whether localized therapy was still a reasonable possibility), and I don't feel like I've gotten cheated in the least.--Neil

Dear app, I am very sorry to hear about your mum's new cancer in the brain and spine. Radiation to the spine is certainly appropriate and hopefully will help with the pain and to prevent issues with weakness in the arms and legs.

As for the brain, cancer progressing in the brain after a patient has already had whole brain radiation can be very difficult to deal with. Radiation can be repeated, but the side effects are much worse the second time around and often it is not felt to be worth the risk. Temozolamide (Temodar) is a chemotherapy drug that gets into the brain better than most other chemotherapy drugs and so is often used in situations like your mum's. The problem with Temodar is that is isn't a chemotherapy that is often used for lung cancer, and probably only works in a minority of patients. There certainly have been cases where it has helped so it is reasonable to try, and it doesn't have very bad side effects in my experience so there is likely not much harm in trying it. Sometimes patients choose only to treat the swelling in the brain with steroids but to stop chemotherapy in this situation, so it depends a lot on how motivated she is to try something.

I hope whatever she decides to do that she feels better soon!