Doctors: What is this and how can I be tested? I am on second line chemo (Abraxane) after Carboplatin/Etoposide and would like to know if a "tumor marker blood test" is something that is routinely done to see if the chemo is working? Please explain. Regards, Gloria from Pittsburgh
Tue, 02/28/2012 - 13:35
Hi Gloria, hope you're doing well and the chemotherapy is not giving you too hard a time. While you're waiting for a doctor to answer, I thought this post of Dr West's might be useful:
My understanding is that these are proteins in the blood which some oncologists use to assess what the cancer is doing, along with scans and symptoms. So there's no special test involved, and it may be that your doctors are already checking these markers when they take your blood at a regular clinic visit. I've never asked about mine, as I have gained the strong impression from GRACE that they are not particularly useful (and can even be misleading), except as part of a bigger picture that includes how the patient is feeling, what the scans suggest and so on.
Tue, 02/28/2012 - 15:44
Dr wants to do 3 cycles of Abraxane (once a week for 3 weeks/one week off, repeat) and if it isn't working I would like to know sooner than later to try something else. I am feeling great, tolerated the Abraxane like I didn't have chemo at all with the exception of a very severe case of "thrush" down my throat this time so I couldn't talk or eat without pain. Dr. put me on Diflucan and Nystatin on Monday and am feeling a lot better today. Still having some sharp right lower lung pain, but I am assuming this is from the fungal infection in my body? I was asking about tumor markers because I want to KNOW something is working. I fear that because I didn't lose my hair on the Carboplatin/Etoposide and am not shedding that much on the Abraxane that maybe it isn't working on me? Call me crazy. Just trying to fight the beast with as much as I can throw at it. Thanks for responding Certain Spring. Regards, Gloria from Pittsburgh
PS: I am not used of the new format, I know I posted this in more than one forum. Sorry.
Tue, 02/28/2012 - 18:23
I don't have anything really to add to certain spring's comments and the summary link that she provided, except perhaps this additional post:
Serum tumor markers are not a validated way to follow lung cancer. They can be helpful for some people, but many experts don't favor using them at all, since we definitely often see people making extremely poor clinical decisions with them as often as they add insight. Specifically, I and just about every other expert here favors NOT using serum tumor markers alone to make clinical decisions like concluding that a therapy isn't working and that a different treatment should be tried. They can provide a hint of the probability that treatment is or isn't effective, so I think that they can potentially be helpful for guiding how frequently to get scans, but they are absolutely NOT as reliable as scans in clarifying whether a lung cancer is responding or progressing.
Fri, 03/02/2012 - 21:45
My husband was diagnosed with inoperable, stage 3B adenocarcinoma of the lungs in June 2011. He had 39 radiation treatments and 6 carboplatin/taxol treatments. At the six month PET scan he had metastisis and was moved to stage 4. He was put on Aliminta (six treatments; just finished third) for palliative care.
While going through some EOBs we learned a sample was sent to a lab and I THINK it was for tumor marker testing. We requested the results be mailed to us and it said: “EGFR negative; a wild type EGFR sequence was detected with no mutations identified” and “ALK Fish negative” ” an abnormal signal pattern of 3 fusions was seen in 64% of nuclei scored” and “this suggests ALK gene amplification or polysomy of chromosome 2.- what does this all really mean?
Is the Aliminta the best treatment for him? What is the average survival rate? Please just share any info you think will help.
Sat, 03/03/2012 - 03:04
Hallo Dawn, and I am very sorry to hear of all that you and your husband have been going through. I am stage IV myself so I have some idea of what it is like.
Just to be clear, perplexedmom (above) was asking about tests for proteins in the blood. The kind of test your husband has had is typically done on a biopsy from the tumour (sorry I don't know what an EOB is so not sure if this is relevant in your case). His doctors will have been trying to find out whether he has one of two genetic mutations that might make him a good candidate for a "targeted oral therapy", ie a pill that works well on people with these mutations. I think the results show he is negative for both mutations ("EGFR" and "ALK"), although one of the doctors will be able to explain better what the detailed ALK report means.
The doctors will also be able to give you more detailed thoughts about Alimta. We have a lot of information on GRACE but without knowing a little more about your husband's dx it is hard to know what posts might be useful for you (if you go to your "Profile" you can create a "signature" with a summary of his diagnosis and treatment thus far). Anecdotally, many people on GRACE seem to do very well on it.
In general the statistics on stage IV survival are not very cheering, as you probably already know, but they do vary according to the general health of the patient, the nature of the metastasis, how fast the cancer is growing, and so on. I am sure you are a great support to your husband, and I wish you both the very best.
Sat, 03/03/2012 - 06:01
Dawn, it's also how's he's responding to treatment. Stage IV is no longer an automatic death sentence, as many new treatments are available that are allowing people to live longer with better quality of life. As for mutations, it's not called genetic mutation in LC. As LC has not been shown to be genetic, which would be inherited. The EGFR, ALK and K-RAS are all mutations of cancer. There are many more being discovered as time goes on. I'm sure the doctors will correct me if I'm wrong. Where was his metastis that progressed him to stage IV? Wishing you both the best. Take care, Judy
Sat, 03/03/2012 - 09:38
Actually I think there is nothing wrong with referring to EGFR as a genetic mutation: it is a somatic rather than a germinal mutation, ie not passed on through the parents.
Sat, 03/03/2012 - 09:40
His primary symptom, the cough, continues to worsen. The metastis was tumors to both lungs and lymph nodes on both sides, still within chest. There is still active cancer at the original site at the mediastinal.
An EOB is the Explanation of Benefits you receive from the insurance company explaining payments to your doctor, etc. We originally asked that the testing be done from day one and many times after that, thinking this would give the doctor the best direction to go for treatment and not make my husband suffer through treatments that didn't have the potential to work on his specific kind of cancer. We were told it wasn't necessary and the doctor didn't say anything about having it done, we just found out it was done by reading the EOBs. We plan to inquire about it when he goes back for his next appointment and I'm trying to learn as much as I can before then so I have intelligent questions.
The best I can gather from things on the internet is there isn't a "targeted treatment" for my husband's result and it is the type that has the shortest survival rate compared to others as the report clearly states "shorter survival when compared to mutation positive patients"... but what does that really mean?
Thank you all for your comments, I look forward to reading more!
Sat, 03/03/2012 - 11:49
Here's a link that should provide a helpful summary of the molecular markers we use:
Since that was written, the drug XALKORI (crizotinib) has been approved by the FDA for the minority of patients with NSCLC that has an ALK rearrangement.
Unfortunately, my reading of the language leads me to the conclusion that your husband's cancer is negative for both an EGFR mutation and an ALK rearrangement, which are the two results that lead to a clear "actionable" plan of a targeted therapy (EGFR inhibitor or XALKORI, respectively). I can't speak to the details about ALK testing, but the overall conclusion is that it's a negative test.
In the absence of either of these mutations, chemotherapy remains the mainstay of treatment for advanced NSCLC, though the EGFR inhibitor Tarceva (erlotinib) is FDA approved and can be at least modestly beneficial for people with advanced NSCLC who [i]don't[/i]have an EGFR mutation. It is typically given as a treatment after one or a few lines of chemotherapy in patients who don't have an EGFR mutation, which is also called EGFR "wild type".
Sat, 03/03/2012 - 12:32
Thank you for your response Dr. West. I see that you said Tarceva is a modestly beneficial treatment after one or a few lines of chemotherapy in people who do not have the EGFR mutation or that have "wild type" EGFR... What is a "modest" benefit?
In your experience, what is the average survival time for patients with stage 4 NSCLC? Do you have any other suggestions for treatments or reading we should be looking into? Do you think that the internet has helped patients become more educated about their diseases or do you feel in some ways it has hinder the doctor's ability to treat the patient?
Sat, 03/03/2012 - 13:00
I started an internet-based nonprofit to provide good, timely information about cancer to patients and caregivers, so perhaps I'm biased, but I'd say that [i]if the information is of good quality and balanced[/i], it can be a great help. The key is to recognizing the credibility of the source. There is a lot of awful information online, but if you can discriminate how knowledgeable the source is, you can find content that should be very helpful. I wanted people to feel assured that the content here, provided by cancer experts and many pretty sophisticated and knowledgeable patients and caregivers, can be trusted.
The "median" survival with advanced NSCLC is around 9-10 months for a "general population" (on some studies of more cherry-picked patients, we can see a median survival of 12 months or a little longer. This is the point at which half of the patients remain alive and half have died, and it's only somewhat helpful. These stats can tell us how a population of people will do, but they don't tell how an individual person might do, and there is a wide range: some patients will now live several years, and we now see more advanced NSCLC patients living 2 or 3 or even more years than we ever did before. On the other hand, aggressive and treatment-resistant cancers still humble us, and we still have patients who may succumb to their disease in just a few months (or occasionally less than that).
Here is a post about the general treatment options we tend to favor for second line or later therapy for advanced NSCLC. http://cancergrace.org/lung/2010/10/04/lung-cancer-faq-2nd-line-nsclc-o…
And when you ask about how much of a benefit might be expected from Tarceva, as a so called "modest benefit", it would typically be in the range of 1-3 months, though it [i]can[/i] be more helpful, even if that isn't the rule Here's a little more information:
Of course, we realize that this is nothing to beat our chests about, but if it is a well tolerated treatment and a patient lives 6 or 8 or more weeks longer for getting it, we generally think it's worth trying.
Mon, 03/05/2012 - 05:48
Dawn, is there an upcoming scan that will show how your husband is responding to Alimta? I applaud you for trying to find out as much as possible - it's good to be able to speak to the oncologist on something like equal terms. (Not that I have ever managed it myself!)
I think the truth is that no one can tell you exactly what's going to happen. I completely understand why you want an accurate prognosis - there's a great desire to prepare, to plan, to control an uncontrollable situation. My brother said something to me on dx which I found helpful - that the uncertainty cuts both ways. Your husband might do worse than the average patient with his disease - or he might do better. Equally, while I feel very lucky to have a mutation that makes me responsive (for now) to a targeted therapy, I could die of pneumonia next week. Living with that uncertainty is very hard - probably harder for the partner than the patient.
As to new treatments, you'll get very good information on GRACE. I know the gnawing feeling that there might be something out there which you are missing, but the link on second-line treatment posted by Dr West may reassure you about the choices your husband's doctors are making. Very best.
Wed, 03/07/2012 - 20:33
I completely agree with the statement you made; "there’s a great desire to prepare, to plan, to control an uncontrollable situation". I am a planner, an organizer, a solver, and at times, can be a control freak. My husband keeps telling me to not sweat the small stuff and, for him, I'm trying.
I think it's important to be able to have the most intelligent conversation that you can with your doctor. To anticipate what he/she may say and be prepared with questions so that you can have a better understanding of the treatment, diagnosis, side effects, etc. I think I have surprised him at times but he doesn't know my experience with lung cancer so many of the questions I have are those that I wish I could have asked when it was my dad going through it. My dad didn't want anyone to know what was happening with him -- I have learned a lot due to requesting his records.
I think part of my frustration comes from having watched my dad die from lung cancer twenty five years ago and now have a husband going through it and honestly I am not seeing them do anything new or different for him than I saw them do for my dad. Yes, I know the radiation is improved, I know the Chemo is improved but can't figure out why, in twenty five years, we haven't come further in lung cancer treatments or in finding a cure. As soon as my husband heard the words "lung cancer" he looked at me and said I'm a dead man walking and he reminds me every couple of days that he's dying. I keep telling him positive attitudes go along way -- they told my dad that he would live a year and he did because he believed he would even though his chart/ medical records said six months.
He won't have any scans for awhile. He has to finish this cycle of chemo and after six months he will have a PET scan to see how things are going.
I'll keep you informed. Thank you for your responses.