Dilemma on next step - 1248090

First of all, I'm not a doctor but a member. I'm sorry to hear of your wife's diagnosis, but it sounds like she's doing well on just Alimta. Is this the only treatment she's had? Most reputable onc don't use serum markers or CEA to follow lung cancer and definitely not an xray for follow-up. I'd ask for a CT scan, which is the normal scan used once treatment is started. A PET would normally be done only if something needs to be clarified on the CT scan. Did she have a PET and brain MRI during the diagnostic process? Wishing you both all the best. Take care, Judy

Hi fides,

I understand that such a dramatic change in serum tumor markers would seem to indicate response to treatment, and it may. For some patients, response and markers can be consistent. On the other hand, the most recent changes in those markers were so small I don't think a judgment should be made from them. You may want to review Dr. West's FAQ on assessing treatment response: http://cancergrace.org/cancer-101/2010/09/16/cancer-101-faq-assessment-… At the end of that post there are also links to posts on serum tumor markers.

JimC
Forum moderator

What a confusing picture for you, Fides. I agree with Judy that it seems entirely reasonable to ask for a CT - and perhaps another discussion with your wife's oncologist. My understanding is that platinum-based drugs are usually used in first-line and should not be undertaken lightly after first line, not least because they wear people out. And yes, Tarceva most certainly would be an option for your wife if progression is confirmed, notwithstanding the fact that she doesn't have the EGFR mutation. This post by Dr West is helpful:
http://cancergrace.org/lung/2010/09/21/benefit-from-egfr-tki-if-egfr-wt/
I think you need a doctor's input here, and hopefully one will comment soon. Very best to you and your wife.
PS - if you want your wife's medical history to show up on the forums, you need to fill in the "forum signature" box on your "Profile" page. The box marked "Biographical Information" doesn't show up on the forum pages. Annoying but true.

3 things, first welcome to Grace fides. It seems no matter how much a layperson like us reads new questions come up...often.
As per cs's suggestion I'll contact a doctor for input. You should hear back within 12 hours.
And lastly, It is my understanding that a platinum doublet (platinum plus another drug) can be used in second line treatment (most often it is used in first line tx or 2nd if the person being treated was egfr positive and used tarceva or irresa first line.) . Like cs said it can be quite difficult with side effects and has been shown to be beneficial up to 4 to 6 rounds. After that it can cause hypersensitivity.

I hope your wife is able to stay on Alimta alone for a very long time and very good luck to you and your wife moving forward.

Janine
forum moderator

certain spring mentions "forum signature" on the "profiles" page. I don't see it on the profiles page.

Yea, there are 2 profile pages. one for WordPress "Profile" and one for us at Grace. You want the "forum profile" found by clicking on your username (maplecrest) on the left of your post.
once there click edit signature.
I meant to clarify that.

Dear Fides

Sorry to hear about your wife's diagnosis, though she sounds as if she's doing well overall. i will try to address all of the questions in your posts, let me know if i missed anything.

Most oncologists don't use serum markers for lung cancer because they are not very reliable, unlike markers in other types of cancers (like prostate). In this case it does seem that the very high markers at the beginning did drop down a lot corresponding to her disease getting better, so they would be something to follow. but - the changes you've noted are very small - 32 to 35 or 9 to 11 - and would be within lab error or could easily be from a transient viral illness. i would not get excited about marker changes unless they went way up again (like over 100). more importantly i would not change chemo management based on markers alone, (which is why we usually don't use them) i would want imaging or symptom evidence of clear disease progression.

Regular CT's or PETs (based on availability) are useful for tracking response. a scan every 6 - 10 weeks depending on symptoms or xray findings is typical. either kind is fine for follow up they just show different things, yes a PET can show bone mets that a CT might miss but if she has no bone symptoms then it probably doesn't matter which scan is used. a scan now seems very reasonable, if for no other reason than a new baseline compared to Dec 2011 for future comparisons when treatment changes are needed.

It's true, we don't tend to use platinum doublets 2nd line, usually because we use them first. i'm assuming there was a reason she didn't get cis or carbo with the alimta to start with. maybe that's changed over time and now it would be reasonable, i can't say on an individual basis without knowing why it was held first. in general platinums are some of the most active and most toxic drugs for lung cancer.

EGFR mutation status is not needed beyond 1st line and tarceva might be a good option too

hope that helps

fides,

I really agree completely with my friend Dr. Laskin and the comments that several of our very knowledgeable members here have offered (they become quite knowledgeable, after all). I personally think it's a significant error to make treatment changes based on tumor markers alone in lung cancer, especially such a small change after such a dramatic drop previously. I strongly favor making the distinction between a detectable change and a clinically significant change. This applies whether it's based on imaging or tumor markers. A very small, asymptomatic change just doesn't merit a change from a generally effective, well tolerated treatment approach.

This also speaks to the question of why PET scans can be such a hot button issue. I would say that minor progression, including new small nodules, would probably fall below the level of resolution of a PET scan but would be more likely picked up on a diagnostic CT (high quality, dedicated CT, as opposed to the freebie that comes with a PET scan). But all too often, a PET scan shows a minor change in the metabolic activity of one or more lesions (as defined by the numeric standard uptake value, or SUV) that isn't accompanied by appreciable growth but leads an antsy oncologist and/or patient to discard a treatment in the absence of clinically significant progression.

It is certainly a problem to continue a treatment that is causing side effects and not deterring the cancer, but it's also an error to throw out the baby with the bath water -- treatments that are still doing a good job overall shouldn't be discarded too early just because someone is itchy is looking extra hard for trouble. There's no need -- all too often trouble finds us.

-Dr. West