NSCLC Stage 4 Adenocarcinoma. The journey begins... - 1263094

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dunn77
NSCLC Stage 4 Adenocarcinoma. The journey begins... - 1263094

Hi - I'm glad to have found this site today - there is so much information i'm finding useful to read even at this early stage. I will be re-reading and understanding more of the information on this site as I progress.

I wished I had started looking up all this info online earlier but haven't been able to bring myself to do this until the last few days :( Leaving it to my oncologist to make the calls at this stage, but still very thankful for finding this site so I can learn more in the meantime.

A little about me :

36 year old male. Diagnosed March 2014 with stage IV NSCLC Adenocarcinoma.

Pleural effusion right lung early Feb 2014. Thoracentesis (1L) twice in 3wks while testing. Diagnosis from pleural fluid. CT in late Feb 2014 showed right middle lobe collapse, large lung and mediastinal lymph nodes. No masses visible in lung, liver, adrenals.

Surgical Pleurodesis Mid March 2014. Numerous 2-3mm nodules found on pleural surface with discrete larger nodules on the diaphragm. EGFR and ALK results last week came back negative. Testing for KRAS and ROS now underway.

I haven't requested a PET scan since i guess i'm too frightened at what they might find, although my oncologist commented that it wouldn't change the treatment now at any rate.

We have both public (free) and private (self/insurance paid) healthcare. Public health will cover treatment using Paclitaxel with Carboplatin (I think).

My oncologist has recommended I go private since they will use Pemetrexed plus Cisplatin. His reasoning is less side effects with this combination and possibly slightly more time.

I've chosen Pemetrexed/Cisplatin and am due to start round 1 of 6 this coming Thursday.

I'm hopeful I will respond favourably. Lets see how this goes....

JimC
Reply To: NSCLC Stage 4 Adenocarcinoma. The journey begins…

Hi dunn77,

Welcome to GRACE. I'm sorry you need to be here, but I know you will find plenty of good information as well as support from the GRACE community.

Your doctor's reasoning regarding a PET scan is consistent with that of the GRACE faculty...once staging is established as Stage IV, it is not necessary (and as you say, just not psychologically helpful) to track down every metastasis that may be present. That's the job of systemic therapy such as the chemo you'll be getting. If you were to develop symptoms from a particular metastasis (for example, pain from a bone met), then further scanning and perhaps local treatment such as radiation may be warranted.

At this point, we will assume that your chemo will find and destroy all your cancer cells!

Best of luck with treatment,

JimC
Forum moderator

<p>I began visiting GRACE in July, 2008 when my wife Liz was diagnosed with lung cancer, and became a forum moderator in January, 2010. My beloved wife of 30 years passed away Nov. 4, 2011 after battling stage IV lung cancer for 3 years and 4 months</p>

Dr West
Reply To: NSCLC Stage 4 Adenocarcinoma. The journey begins…

I'm sorry to hear of your recent diagnosis, especially as young as you are.

The evidence suggests that there are rather small differences in the efficacy of the various "platinum doublets" of cisplatin or carboplatin with a partner drug like Taxol (paclitaxel) or Alimta (pemetrexed) -- they produce results that are more similar than different, though side effect profiles vary. I don't know that the cisplatin/Alimta combination is clearly less toxic than carbo/Taxol (the Taxol is probably a little harder than the Alimta, but cisplatin's greater challenge than carbo counterbalances), but if I had to name a doublet that is a little more active than others, I'd say cisplatin/Alimta would be the leading one. I don't think the differences are so big that it doesn't all come out in the wash when you're treating patients over hopefully several lines of treatment, but cisplatin/Alimta as good a doublet as any, if not better by a small margin. And if there's any patient in whom we might favor cisplatin and be inclined to accept the risk of side effects, it would be an unusually young patient such as yourself.

Good luck.

-Dr. West

+++++++++++++++++++++++++
Dr. Howard (Jack) West
Medical Oncologist
City of Hope Cancer Center
Duarte, CA

Founder & President
Global Resource for Advancing
Cancer Education

Dr West
Reply To: NSCLC Stage 4 Adenocarcinoma. The journey begins…

And I agree that once you have evidence of advanced NSCLC, the only potential value of additional staging would be to look for brain metastases (generally with a brain MRI, if a patient can do that, or a brain CT if not), and sometimes consideration of a PET/CT just to check for bone involvement, since it could lead us to favor adding a medication just for the bones, such as Zometa (zoledronic acid) or XGEVA (denosumab) to lower the risk of skeletal-related complications from the bone metastases over time. But the big picture is largely already determined once you know the cancer is stage IV.

-Dr. West

+++++++++++++++++++++++++
Dr. Howard (Jack) West
Medical Oncologist
City of Hope Cancer Center
Duarte, CA

Founder & President
Global Resource for Advancing
Cancer Education

dunn77
Reply To: NSCLC Stage 4 Adenocarcinoma. The journey begins…

Thanks so much for your replies.

Its encouraging for me after reading your posts to think that I seem to be on the right track.

I'm certainly intending to stay with my current oncologist. I have to say that I've never found a more committed bunch of people than those I've come across that work in this particular field.

I feel confident that I am in safe and competent hands.

marisa93
Reply To: NSCLC Stage 4 Adenocarcinoma. The journey begins…

I want to say a quick hi and welcome to GRACE!

It's very unfortunate that you had reason to go looking but as you already know this is a wonderful site.

I wish you all the best in your treatment and journey!

Lisa

dunn77
Reply To: NSCLC Stage 4 Adenocarcinoma. The journey begins…

Hello again - Just thought i'd post an update here so as not to clutter up the forums.

I'm now midway through my planned 6 initial cycles of Carboplatin (740mg) /Pemetrexed (1000mg).

EGFR/KRAS/ALK/ROS negative. Testing for BRaf.

I had a CT scan this past Monday and went to see my oncologist this morning.

My oncologist is extremely surprised and happy to report that I seem to have had what he termed a "complete response" to the treatment.

Lymph nodes are no longer visible and he says that my right lung has reinflated. There are some small scattered nodules along the very slightly thickened pleura which the radiologist thinks is related to the pleurodesis I had earlier this year. Nothing seen in liver or glands. Basically NED.

The original CT scan in Feb 2014 never revealed the primary (TX N2 M1a) so I presume he is basing my "complete response" on lack of visible lymph nodes, reinflation of the lung, and position of structures/vessels within my lung.

I will have 3 more cycles to complete the 6. He suggests a PET scan on completion and possible radiotherapy/surgery for any remaining areas that may show up. Then 3-monthly CT scans thereafter.

There was also some talk about re-doing genetic testing as he is quite surprised there has not being any positive results (especially ALK). Apparently ALK patients do very well on Alimta.

I asked him about Alimta maintenance therapy but he didn't think it was necessary considering the response already shown and he now considers me in remission.

I'm not sure if he is just being overly optimistic about the remission part (tbqh im not quite sure what to think at the moment), but i'm hopeful that I get to stay in "remission" for as long as possible.

JimC
Reply To: NSCLC Stage 4 Adenocarcinoma. The journey begins…

Hi dunn77,

Congratulations on the great response to chemo!!

Although it is true that there is evidence that patients with an ALK rearrangement tend to respond well to Alimta, it is not true that a good response to Alimta makes it likely that you are ALK positive. As Dr. West has said:

"I actually didn’t say that if a cancer responds to Alimta (pemetrexed) that it is likely to be ALK+. There is a very limited amount of suggestive evidence that patients with an ALK+ NSCLC seem to often respond well to Alimta, but the response rate to a platinum/Alimta combination is about 25-35%, and only about 4-5% of NSCLC patients in North America and many other places have an ALK rearrangement, so I would not presume that someone who responded to a platinum/Alimta combination must therefore have an ALK rearrangement." - http://cancergrace.org/topic/mucinous-bac-options#post-1263972

Although some oncologists favor using maintenance in some situations, it remains unclear just how much benefit it provides. In your case, if you are essentially NED after your first-line chemo and your scans remain so over time, it will be difficult to know if it is the maintenance chemo controlling the cancer or if you have truly had a complete response and there is nothing left to treat. As Dr. West has stated:

"[T]here’s no evidence to answer such a question. My approach is to ask what is the least treatment needed to control the disease. This could include any of the following options:

1) taking a break from all treatment and jumping back in at some point when progression is seen.

2) dropping either agent and continuing with just one. I would say that there is more evidence of the value of ongoing Alimta (pemetrexed) than Avastin.

3) Continuing treatment on a less frequent schedule, such as every few weeks.

[continued in the next post]

JimC
Forum moderator

<p>I began visiting GRACE in July, 2008 when my wife Liz was diagnosed with lung cancer, and became a forum moderator in January, 2010. My beloved wife of 30 years passed away Nov. 4, 2011 after battling stage IV lung cancer for 3 years and 4 months</p>

JimC
Reply To: NSCLC Stage 4 Adenocarcinoma. The journey begins…

[continued from the previous post]

"While there is no evidence to support any one of these ideas over another, there is reason to be wary about longitudinal side effects of years of these treatments, as very few patients on maintenance therapy trials have been followed this far out, and there could be side effect issues that emerge from years of ongoing therapy. Without any actual evidence to favor any choice over another, it’s not possible to make a clear recommendation — I individualize it to the patient and their own preferences and issues." - http://cancergrace.org/topic/ned-when-do-you-stop-treatment#post-1256807

JimC
Forum moderator

<p>I began visiting GRACE in July, 2008 when my wife Liz was diagnosed with lung cancer, and became a forum moderator in January, 2010. My beloved wife of 30 years passed away Nov. 4, 2011 after battling stage IV lung cancer for 3 years and 4 months</p>

catdander
Reply To: NSCLC Stage 4 Adenocarcinoma. The journey begins…

Congratulations on NED dunn77! I hope you move forward with minimal treatment and lots of living life!

Janine

Dr West
Reply To: NSCLC Stage 4 Adenocarcinoma. The journey begins…

Congratulations! Jim already summarized my key points. As he noted in my extracted comments, I would not work backwards from someone responding to chemo with Alimta to presuming that someone has an ALK rearrangement. Most don't.

And I think that someone responding very well, and especially with no evidence of disease, would be a fine candidate for taking a break from treatment and just being monitored attentively over time.

Good luck.

-Dr. West

+++++++++++++++++++++++++
Dr. Howard (Jack) West
Medical Oncologist
City of Hope Cancer Center
Duarte, CA

Founder & President
Global Resource for Advancing
Cancer Education

luke
Reply To: NSCLC Stage 4 Adenocarcinoma. The journey begins…

Hi Dunn77, I just wanted to congratulate you on the superb response.

dunn77
Reply To: NSCLC Stage 4 Adenocarcinoma. The journey begins…

Hello again.

Thanks for all the replies regarding my good response to my induction chemotherapy. Happy to report that i've finished my first round of chemotherapy for the moment.

Somewhat less enthused that my oncologist (and now me), seems to be somewhat... confused at the latest results and what to do next.

I had a full body PET CT Scan 2 weeks after the last infusion which found a 13x9x8mm nodule that seemed to be active (FDG-avid SUV 13.2) on the horizontal fissure of my right lung, surrounded by other inactive nodules. Also, other small nodules in the costophrenic recesses with SUV's ranging from 5.5-6.2.

No intrapulmonary nodules, no pleural fluid, no enlarged or hypermetabolic hilar or mediastinal lymph nodes. All other regions of me including brain seem to be "normal".

I think the issue for him was the presence of "pleural nodular disease" but the lack of lung/nodal/distant disease. I'm still not sure why this would confuse him? maybe it was expected to have active nodules in my lung and not on the pleura? I'm sure I did ask at the review but I cannot recall his reply, although I guess if it was straight forward neither of us would be confused ....

The question of radiotherapy arose but unsure whether to irradiate just one or several sites. And he thought surgery might be questionable due to my earlier pleurodesis....

As it stands he wishes to confer with colleagues overseas before he advises what the next best steps would be.

JimC
Reply To: NSCLC Stage 4 Adenocarcinoma. The journey begins…

Hi dunn77,

Perhaps your doctor is surprised to find apparent progression only in the pleura and not anywhere else, but as Dr. West often states, lung cancer can do pretty much anything, especially after cancer cells have entered the bloodstream. Though your earlier CT showed a complete response, that scan could not detect the possible presence of micro-metastases, too small to appear on any scan. Why those micro-metastases will form nodules in particular places in the body is a process which is still poorly understood.

The idea of local therapy such as radiation or surgery is usually not a viable option with metastatic lung cancer, as described in this GRACE FAQ: http://cancergrace.org/cancer-101/2011/01/01/cancer-101-faq-i-have-metas...

JimC
Forum moderator

<p>I began visiting GRACE in July, 2008 when my wife Liz was diagnosed with lung cancer, and became a forum moderator in January, 2010. My beloved wife of 30 years passed away Nov. 4, 2011 after battling stage IV lung cancer for 3 years and 4 months</p>

Dr West
Reply To: NSCLC Stage 4 Adenocarcinoma. The journey begins…

The presence of active cancer in the pleural lining isn't especially rare, and this represents advanced disease if it's truly cancer. That's typically what new PET-avid nodules represent. However, after a pleurodesis, sometimes the new pleural-based findings may represent inflammatory changes.

This could be clarified by either trying to directly biopsying the nodule(s) in question to see whether you find cancer or inflammation, or following things over time to see whether you see the nodules remain stable or shrink (a welcome result suggetive of inflammation), or you see the nodules enlarge over time (consistent with cancer).

Good luck.

-Dr. West

+++++++++++++++++++++++++
Dr. Howard (Jack) West
Medical Oncologist
City of Hope Cancer Center
Duarte, CA

Founder & President
Global Resource for Advancing
Cancer Education

craig
craig's picture
Reply To: NSCLC Stage 4 Adenocarcinoma. The journey begins…

dunn77,

FYI -- There are other rare mutations that might be somewhat useful at least via experimental clinical trials. Increasingly oncologists are sending for testing to labs that can test for many things (e.g., a couple of hundred known mutations/rearrangements, few of which are known to be likely or potentially useful), for example at Foundation Medicine although labs are research-oriented cancer centers have been increasingly adding similar capabilities. Sometimes (but not usually) these gene sequencing tests will identify a driving mutation that individual mutation testing wasn't able to, or vice versa, so this approach to testing might be useful if you're considering using up biopsy sample for more testing. However, this approach usually isn't covered by insurance, so if $'s are an issue for you be sure to ask the lab if a discount could be available.

In particular, RET, HER2, MET, and NTRK1 come to mind at this point in time. Potentially-useful driving mutations tend to be more common in never-smokers (e.g., EGFR, ALK, ROS1, RET too I think) and some mutations are more common in smokers (KRAS, NRAS, maybe BRAF somewhat I think), but that's not a rule just odds.

If a useful "driving mutation" cannot be found, there's also the possibility at some point in your treatment roadmap of trying an experimental immunotherapy drug. As I understand it, the odds of response usually aren't as high as one's initial chemo combo, but at some later point the odds might favor an anti-PD-1/anti-PD-L1 immunotherapy drug or combo instead. The odds of response from anti-PD-L1/anti-PD1 drugs are better for those with a smoking history (as are the odds of having cancer which tests "positive" for high expression of PD-L1 which might suggest better odds instead of low odds). . . . Just something extra to discuss with your oncologist.

Best hopes,

Craig in PA

_________________________________
Stage 4 ROS1+ [mucinous BAC] adenocarcinoma NSCLC since 2011
Xalkori (crizotinib) 5 yrs
Alimta (pemetrexed) + carboplatin (mere months)
TPX-0005 (repotrectinib) TBD (1+ years as of Fall 2018)

dunn77
Reply To: NSCLC Stage 4 Adenocarcinoma. The journey begins…

Thankyou for your informative replies :)

Its given me more to think about and more questions to ask my oncologist next time I see him.

I read through the FAQ that JimC thoughtfully linked regarding the limited use of local therapies in metastatic disease due to risk vs benefit. A tricky business, and unproven/unstudied even with targeted treatments such as focal radiation.

Dr West - regarding inflammation vs disease - how much inflammatory process generally speaking, is likely after pluerodesis roughly 5-6 months post op? I still have subacute discomfort in this area that im putting down to chronic pain.

Craig - Thanks for the information regarding gene sequencing tests. Something else to discuss, hopefully there is a lab in this part of the world we may be able to send the remaining (or new) sample to. Also its interesting you mention immunotherapy as I recall the doc talking about that option too - A trial of Immuno vs Docetaxel. Im not sure how keen he was on the Docetaxel part...

We are still waiting for a reply from colleagues overseas although, since it has been several weeks, I wonder if they are somewhat reticent about giving an opinion on someone they've never seen first hand.

Thanks once again. My "To ask the doc" list is getting bigger :)

craig
craig's picture
Reply To: NSCLC Stage 4 Adenocarcinoma. The journey begins…

dunn77,

Which part of the world is your part of the world? I don't think you've mentioned where although the treatment options you refer to seem up-to-date.

Best hopes,

Craig in PA

_________________________________
Stage 4 ROS1+ [mucinous BAC] adenocarcinoma NSCLC since 2011
Xalkori (crizotinib) 5 yrs
Alimta (pemetrexed) + carboplatin (mere months)
TPX-0005 (repotrectinib) TBD (1+ years as of Fall 2018)

Dr West
Reply To: NSCLC Stage 4 Adenocarcinoma. The journey begins…

dunn77,

I really don't see enough patients today who have had pleurodeses to say what's within the realm of normal. I would say that some degree of chronic pain after a pleurodesis (including months later, or longer) is very possible.

Good luck.

-Dr. West

+++++++++++++++++++++++++
Dr. Howard (Jack) West
Medical Oncologist
City of Hope Cancer Center
Duarte, CA

Founder & President
Global Resource for Advancing
Cancer Education

dunn77
Craig :

Craig :

New Zealand - Oceania/Pacific Region. The lab where I am tests for ROS/KRas/BRaf/ROS/ALK/EGFR that I know of. The specialists here I would say are fairly up to date with current trends. Only issue here is there don't seem to be many trials in this country, which doesn't surprise me, and by some reports, we still lag behind Australia in access to certain medications.

Overseas labs ie: Australia, either to retest or test for other rearrangements.

craig
craig's picture
dunn,

dunn,

Your local lab should also be able to test for RET and HER2 -- they are common in thyroid and breast cancer, respectively, and might often be tested in connection with using drugs for those driving mutations in those cancers.

For trials in your region of the world, there'll be some in Korea or Japan, but Ben Solomon at Peter Mac in East Melbourne, Australia is perhaps the best English-language expert I'm aware of in that part of the world:

http://www.petermac.org/search/expert?search=solomon

http://www.petermac.org/research/conducting-research/cancer-therapeutics...

Each test uses up biopsy material, so I think most people expect the gene sequencing approach (which can profile hundreds of mutations at once) to be the most common screening method in a few years, although that type of test can take a while so some oncologists might be starting to use a cheap-fast less-reliable immunohistochemistry test but often usable alternative while waiting for results. The gold standard test for some of these today, though, is often an individual test, e.g., FISH break-apart test, but any test has some risk of false-negative or false-positive.

Best hopes,

Craig in PA

_________________________________
Stage 4 ROS1+ [mucinous BAC] adenocarcinoma NSCLC since 2011
Xalkori (crizotinib) 5 yrs
Alimta (pemetrexed) + carboplatin (mere months)
TPX-0005 (repotrectinib) TBD (1+ years as of Fall 2018)