New diagnosis stage iv adenocarcinoma nsclc - 1263064

katbalto
Posts:3

My mother is 58 yrs old. A former smoker. The lung cancer was found about two months ago while getting a yearly scan of an area on her kidney. She had no symptoms. Her CT showed innumerable lung nodules the largest is about 1.4cm. She has enlarged clavicular, hilar, and a few other lymph nodes. No mets so far beyond lung. She had a brain MRI a few days, the only area that was not evaluated. About 3 weeks ago she started having shortness of breath that may have related to anxiety. She wears oxygen 2 liters nasal cannula and has developed a chronic cough. She is mobile though has fatigue. She had chemo on Wednesday and went window shopping and out to eat afterwards. Today reports feeling well. My first question is does the fact that she is doing well so far a good sign of her long term survival? What is the prognosis of someone with innumerable lung nodules?

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Reply # - April 3, 2014, 10:00 PM

JimC
Posts: 2753

Hi katbalto,

Welcome to GRACE. I'm sorry to hear of your mother's diagnosis, but it's great to hear that she's feeling better. There are two ways that oncologist's judge whether a treatment is effective - changes in the imaging on CTs and PET scans, and how a patient is feeling. So until your mother has a follow-up scan, how she feels will be a good indication of the success of her treatment.

It's a little too early to tell now, and it is not unusual for the side effects of chemo to first appear a couple days after chemo. In particular, the nausea caused by many chemo agents may kick in. It is important to try to stay ahead of it by taking anti-nausea meds before she feels too badly, and continue to take them on a regular schedule. Also, small, frequent meals and taking walks can help keep nausea at bay.

As far as long-term prognosis, it is impossible to predict for an individual patient. However, if your mother's cancer has not spread to other parts of her body, her prognosis is better. And those who respond well to initial treatment also tend to do better.

Best of luck with your mother's treatments. Let us know if you have additional questions.

JimC
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Reply # - April 3, 2014, 10:38 PM

Dr West
Posts: 4735

I'm also very sorry to hear of your mother's diagnosis.

There are many predictive factors, but the leading one among them at this point is really how her cancer responds to the treatment. If her scan after the first couple of cycles of chemotherapy demonstrates a response to treatment, her prognosis is quite a bit more favorable than if her cancer progresses on treatment.

In addition, having a good "performance status" is a predictive factor as well.

Good luck. I hope you share how she's doing, and I especially hope you have good news to share at that time!

-Dr. West

Reply # - April 10, 2014, 12:34 PM

katbalto
Posts: 3

I have a few updates about my mother...
the MRI of the brain was negative for metastatic diseases. The cancer is only in her lungs. Her mutation testing came back with egfr exon 18 and 20 deletions. The doctors said that is not the mutation for which Tarceva is most effective, but he is still considering it an option. Are there other drugs available for those specific mutations? Prognosis at this point is at least 6 months depending on her response to chemo.

kat

Reply # - April 10, 2014, 08:50 PM

Dr West
Posts: 4735

kat,

Your oncologist is correct that the mutations you describe are not ones for which our EGFR inhibitors are known to be effective, and it is wrong to put them in the same category as the known activating mutations on exons 19 or 21, for which agents like Tarceva (erlotinib), Iressa (gefitinib), or Gilotrif (afatinib) are all quite active and beneficial for most patients with those mutations respond well. The best evidence we have is that chemo is a better choice as first line therapy for people with the rarer mutations, though I agree it's perfectly great to try it and see if it might be effective as a second or third line treatment.

Good luck.

-Dr. West

Reply # - April 30, 2014, 08:07 PM

katbalto
Posts: 3

I have an update on my mother. She died suddenly a week ago, approx. 3 months after her initial diagnosis. She developed multiple, bilateral pulmonary embolisms that led to respiratory distress requiring intubation. She was being anti-coagulated but the main issue was that tumors had grown and she was not getting sufficient oxygen even on 100% mechanical ventilation. The doctors said her's was the worst case of lung cancer they had seen. I saw her CT scan after she had been intubated and she had little visible lung tissue. I was able to review her initial scan from January and she had innumerable nodules like snowflakes. Her cancer was discovered during a follow-up CT for a kidney abnormality; she was asymptomatic at the time. A couple of months later she was fatigued and requiring oxygen. She had one chemo treatment with carboplatin/pemetrexed early April and was scheduled for another treatment April 23. I had spoken to her doctor a week before and he stated she thought she had at least six months depending on her response to chemo. Just wondering why it happened so quickly. I thought we had time.

Reply # - April 30, 2014, 09:29 PM

Dr West
Posts: 4735

I'm very sorry to hear of your mother's very rapid decline.

I don't have an answer except to say that "cancer can do anything" (as I've said as a common theme on this site -- not just here to explain away her circumstance). Every oncologist has had patients who defy their expectations -- sometimes doing far better than we could have imagined, sometimes doing far worse. The cancer can sometimes change its behavior very quickly, having picked up a new mutation and then suddenly acting far more aggressive. And then sometimes the intervening complications like blood clots or brain metastases can shorten survival.

Oncologists can often provide some reasonable shaping of expectations, but we are all humbled by the curve balls a cancer can throw us.

Please accept my heartfelt condolences.

-Dr. West

Reply # - April 30, 2014, 09:42 PM

bobradinsky
Posts: 144

Katbalto

Please accept my sincerest condolences on the recent death of your mother from lung cancer. As Dr. West points out it is a bewildering disease and a formidable foe. I hope your mother did not suffer and you and your family find peace. Bob

Reply # - May 1, 2014, 06:06 AM

JimC
Posts: 2753

katbalto,

I am so sorry to hear how quickly lung cancer took your mother from you. At times it is just impossible to predict what it will do and how quickly it will progress. Please accept my heartfelt condolences and wish for peace and comfort for you and your family.

JimC
Forum moderator

Reply # - May 1, 2014, 07:18 AM

marisa93
Posts: 215

I am so very sorry for the loss of your mother. I know your loss is compounded by her rapid decline.

My husband passed a year after diagnosis and had done great for most of that year(he went skydiving just 2 months before he passed). I thought we still had time. Suddenly, things went downhill very quickly and he was gone leaving my mind spinning with the question of , "why, after he had done so well?". What I have learned here from GRACE is that there aren't answers to that question. When LC decides to turn and become aggressive it can do so very quickly and there is no stopping it. I have seen it far too many times now.

I hope your good memories with your mom will take the place of the more recent difficult ones. I wish you and your family peace and comfort in the days ahead.

Lisa

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