mom diagnosed 2 weeks ago stage 4 adenocarcinoma.

Ok so here is where we are. Three weeks ago my mom had 1.5l of fluid drained from her plueral cavity. They tested the fluid and came back positive for cancer. She had several scans test etc. There is no signs of cancer anywhere else in her body. I don't believe they have ever even seen a tumor in her lung. Anyway she was sent home, a week later she was readmitted 2 days before her chemo was scheduled. She again had fluid removed another 1.5l. This time they left the tube in for two days then did a talc treatment. It appears the procedure has worked. She was in a lot of discomfort in her back and ribs. So after being in the hospital for 5 days they did a chemo treatment. The next day the were anticipating her going home, but her liver enzymes where very high so the kept her again, the next day the ca

Edited May 10, 2012 at 1:29 pm

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Cancer doctor came in and said the enzymes came down,but she needed a platelet transfusion due to low count. Then they sent her home today. My dad called and said she is so weak and he is very very worried. I told him she has gone through a lot and she will bounce back. But in my heart I'm not so sure. Is this that common my dad sounds like she is in grave condition. I don't know what to think.
Also wanted to note she is on 3l of oxygen due to copd and is a life long smoker. Mom is only 67. Is there anything to be optimistic a out?

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They found my husbands cancer the same way, he too had a plural effusion. He had a chest tube in place for about 3 months and the fluid is dry, he feels much better. Don't give up hope, there are many long time survivors on here. God is amazing.
I will keep your family in my prayers, GOD BLESS.

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If your father feels she's not doing well, he should call her oncologist. She needs to stay hydrated and could have complications if she's not. Do you know what chemo she had? Take care, Judy

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I started off with a massive pericardial effusion combined with pleural effusions. I had a pericardial window surgery which is when they discovered I had cancer. It has been 11 months and I am doing very well. I had outstanding response to chemo and am now on Tarceva. My last two scans have been clean and I have had no repeats of effusion. So don't feel that the situation is hopeless. I agree though, definitely call the oncologist.

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@ Luvgod4
thank you very much for your comments, thoughts and prayers :)

@ Judy, i am not 100% sure on what chemo drugs they gave her i will look into that. i made sure i told my dad that today, so if things don't get better or get worse to call asap. My dad did say this morning she was up a little more today, so that's progress :)

@ fhoneymom,
thak you for the inspiration :) I am very happy for you and pray for similar results for mom :) Her grand kiddies need her around :)

Another question, do you feel that I should push the Dr. to start her on tarceva sooner than later?

Again thank you all for your input. this site really inspires hope and wonderful support. When mom is feeling better i am going to urge her to open an account and join the network as well!!

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Please do let us know what kind of lung cancer it is when you know that (e.g., small cell, squamous, adenocarcinoma, large cells, etc.).

Best hopes,

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Sorry I thought I wrote that.
She has adenocarcinoma. However they technically have never seen or pointed out a tumor.

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I don't have any clearly evident tumors either. I had a masslike infiltrate which pretty much fell apart into nothing while on chemo.

Has she been mutation tested? Tarceva would make sense if she has one of the tarceva sensitive mutations (in my case an egfr exon 19 deletion). I am a non-smoker. I think this mutation is less likely with a lifelong smoker. However, there are other mutations possible, some of which have drugs that will work better.

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How dumb of me. Yes, you did say that very clearly before in the title. Sorry, I guess I got lost in the details.

Next question: Is the cancer being tested to find out what mutation is driving the cancer? EGFR? ALK? ROS1? KRAS?

Best hopes,

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I will surely look into that. I honestly don't believe they have even tested that as it has never been mentioned.

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FWIW, adenocarcinoma has at least a 50% chance of being driven by a mutation for which there is a mutation-targeted drug at least via an experimental clinical trial. The odds are even higher for never-smoker adenocarcinoma. Since a person only has one driving mutation initially (with very very rare exceptions), it makes sense to test in order of odds & usefulness, so EGFR, KRAS, & ALK (or KRAS first in smokers) before testing for the rarer ones like ROS1, c-MET, HER2, and BRAF. Drugs targeted to these "inhibit" (they don't "cure"), but the odds of working in someone with the applicable mutation are high, they last for a number of months, and there may be new experimental treatments on that same track for the kind of resistance that emerges, enabling more months.

Best hopes,

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That is great info. i will be sure to pinpoint this with her dr.

Many, many thanks :)

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If you're going to your doctor with that 50% stat, you'll need a citation, so refer to this medical professional continuing education video at about 1 minute 15 seconds into the video for that 50% stat:
http://www.medscape.org/viewarticle/758204
and slide page 8 in the figures file from this webinar:
http://cancergrace.org/lung/2012/04/15/dr-alice-shaw-on-clinical-factors-as sociated-with-molecular-markers/

I'm taking liberties with that statistic because KRAS isn't considered very druggable today, but there are clinical trials pursuing that and a couple of them are starting to show better odds of benefit than previously possible.

The reason never-smoker adenocarcinoma has better odds of having a drug-targetable mutation is that the KRAS wedge is very small for neversmokers, so everything else becomes a bigger % of the pie.
The odds are even better in East Asia where EGFR is the dominant mutation:
http://clincancerres.aacrjournals.org/content/early/2012/02/07/1078-0432.CC R-11-2511
And here's a chart that includes both East Asian and Western data blurred together, so it's still better than in the Western world alone:
http://www.ncbi.nlm.nih.gov/pmc/articles/PMC2888755/figure/F1/

For an overview of potentially-druggable driving mutations for adenocarcinoma, see
https://www.inspire.com/amyjo1998/journal/mom-diagnosed-with-non-small-cell -adenocarcinoma-stage-4?reply_sort=asc&page=1#cmnt_586276

Best hopes,

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If you are able, try to contact Yale (Smilow Cancer Ctr) and check out clinical trials . Contact Dr. Scott Gettinger. They have changed my life due to my 10 months on crizotinib. I've had to move on to another trial drug at Mass General in Boston. It seems to be an excellent drug (so far), but it is worth everything if you make a few calls in the early stages of treatment.

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Sorry for the long delay in replies. We went for a second opinion and the case was reviewed by a very well respected doctor. She reviewed the case, she says that there is a tumor in the right center lung, there has been spreading to the nodes under the chest plate and obviously the lining of the lung. I asked what mutation is driving the cancer and if it has been tested. She states it was and it falls in a 10% of unknown mutations that do not have any preference in treatments. I still did not catch what chemo drugs she is taking currently but she did state the other doctor is treating her with standard treatment, but would like to add avasten?
Anyway she said to proceed with the 2nd chemo, give it 2 weeks then get a scan done. If it progresses or stays the same she would like to treat my mom, if it gets better she said to stay on course.
on a positive notes her enzymes and blood count has returned to almost normal. Mom does have some lower back pain and leg weakness. The second doc said to order an mri to the lower spine to check for spreading to the spine. hope that is not the case.
I also asked again about terceva, she indicated the mutation does not test for terceva up front, but it is something that may be introduced after the next chemo.
on another positive note, when we were leaving my mom said the other doc. said 6-12 months, the doc did say to remain hopeful and that she has several patients who have exceeded 12 months and into several years. I think that made my moms day :) This was the first time any doc has said anything even remotely positive about the prognosis.

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I'd recommend you find you exactly which mutations were tested rather than settle for a general statement like that.

If all their tests came back 'negative' like you say they told you, then you at least need to find out if they they did a test for ROS1 (which almost no labs other than MGH in Boston and U. Colorado do). Ideally, you'd want a list of all the mutations the tested so you'd know which ones they missed. (E.g., c-MET might also be useful soon; RET or KIT that might become useful later as research progresses.)

(If they have not tested for ROS1, it will become painfully obvious to them that they missed something worth testing when they visit the ASCO conference in two weeks in nearby Chicago and hear the presentation of the first clinical study results on that by Dr. Alice Shaw in a Saturday morning presentation.)

Tarceva sometimes helps cancer that does not have an EGFR mutation, but the odd are low. Chemo might have better odds even though the side effects are (for most people) milder for Tarceva. Your doctor seems to be smart with regard to that and when it might be useful to try.

Best hopes,

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