NSCLC Stage 4 Diagnosis, NED & Staing

Portal Forums Lung/Thoracic Cancer General Lung/Thoracic Cancer NSCLC Stage 4 Diagnosis, NED & Staing

This topic contains 4 replies, has 3 voices, and was last updated by catdander forum moderator catdander forum moderator 4 weeks ago.

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June 19, 2018 at 8:59 pm  #1294639    

phineas629

My father was diagnosed with stage 4 NSCLC in August.
He tested for EGFR and was given the TKI Afatininb to go on.
In January, the scans weren’t showing anything and he was told to celebrate.
Everywhere I read, it’s more than likely that Afatinib will stop working.

We will do whatever to increase his odds of staying NED.
We’re thinking of using Vaxira or something else in conjunction with Afatinib.
If TKI and immunotherapy function differently, then wouldn’t it make sense to use together.
Are there any studies that show taking a more aggressive approach can stop the cancer from coming back?

  • This topic was modified 4 weeks, 1 day ago by  phineas629.
  • This topic was modified 4 weeks, 1 day ago by  phineas629.
June 20, 2018 at 6:26 am  #1294641    
JimC Forum Moderator
JimC Forum Moderator

Hi phineas629,

It’s great to hear that your father’s scans show NED; that’s certainly something to celebrate. While it’s true that statistically most patients eventually progress on Afatinib, a small subset remain NED for an extended period of years. Your father’s NED status makes him a candidate for that result.

Well-tolerated targeted agents tend to be continued until there is significant progression, or until a patient desires a treatment break. With NED status, a treatment break is the only way to determine whether the targeted agent remains necessary to keep the cancer under control.

Adding another agent to a currently effective treatment regimen raises several questions. First, you add potential toxicity. Also, if a patient remains NED under the combination therapy, there’s no way to know if the second agent is helping, or if the result would have been identical if the first agent was continued. In addition, we tend to prefer to maximize the benefit from each agent before changing therapy. As Dr. West is fond of saying, treating stage IV lung cancer should be a marathon, not a sprint.

Although there are a number of trials studying combinations of immunotherapy with other agents, we don’t have complete data on the efficacy of such combinations. It’s something that could be tried, but as discussed above may make such a choice less attractive. In particular, the date on the efficacy of racotumimab (Vaxira) is not mature, as it only has shown positive results in an early-phase trial as compared to best supportive care. A larger, phase III trial is underway.

[continued]


Jul 2008 Wife Liz (51/never smoker) Dx Stage IV NSCLC EGFR exon 19
4 cycles Carbo/alimta, 65% shrinkage
Tarceva maintenance
Mar 2010 progression, added Alimta, stable
Sep 2010 multiple brain mets, WBR
Oct 2010 large pericardial effusion, tamponade
Jan 2011 progression, start abraxane
Jun 2011-New liver, brain mets, add Tarceva
Oct 2011-Dx Leptomeningeal carcinomatosis; pulsed Tarceva
At rest Nov 4 2011
Since then: http://cancergrace.org/blog/jim-and-lisa

June 20, 2018 at 6:29 am  #1294642    
JimC Forum Moderator
JimC Forum Moderator

[continued]

As Dr. Creelan stated a few years ago:

Here is what I understand about VAXIRA:
– Even though VAXIRA is technically a monoclonal antibody, its mechanism of action is fairly comparable to a peptide-based vaccine. Peptide-based vaccines have largely been a disappointment in lung cancer.
– VAXIRA has been approved by regulatory authorities in Cuba and Argentina, which is where the product is manufactured. Drug approvals can have political importance. There is no high level double-blinded evidence to support its use yet.
– I personally have also not heard of any dramatic confirmed tumor shrinkage with this drug.

JimC
Forum moderator


Jul 2008 Wife Liz (51/never smoker) Dx Stage IV NSCLC EGFR exon 19
4 cycles Carbo/alimta, 65% shrinkage
Tarceva maintenance
Mar 2010 progression, added Alimta, stable
Sep 2010 multiple brain mets, WBR
Oct 2010 large pericardial effusion, tamponade
Jan 2011 progression, start abraxane
Jun 2011-New liver, brain mets, add Tarceva
Oct 2011-Dx Leptomeningeal carcinomatosis; pulsed Tarceva
At rest Nov 4 2011
Since then: http://cancergrace.org/blog/jim-and-lisa

June 20, 2018 at 5:25 pm  #1294645    

phineas629

Thanks for the wealth of info JimC. It is hard to take the wait and see approach with all new amazing research coming out. We are also looking at disulfirum and copper in combination with afatinib because our fears are
that the cancer will metastasis to different parts of his body.
The cancer may never be cured but it would be great to keep it in control long term and disulfirum is a low cost medication.

Maybe it’s a little bit too much to ask with abysmal statistics in cancer.

June 21, 2018 at 11:38 am  #1294648    
catdander forum moderator
catdander forum moderator

Phineas629,

I understand the wish that your father be cured. Reality is your father is doing extremely well, as good as it gets under his circumstances. Everyone wants to see NED. Another little known reality about stage IV lung cancer is as long as the cancer isn’t causing symptoms it doesn’t really matter how big the tumors are.
He is taking a pill that keeps his cancer in check and only has to go to the cancer center for check ups. The trip to the cancer center in itself is stressful and even nausea inducing for many patients.

The addition of a drug that hasn’t been tested adds no real advantage. You have no idea if it would cause more harm than good. I noticed in my search that the trial testing the safely of disulfirum plus gemcitibine for people with unresectable solid tumors (a lung cancer fit) was suspended. I didn’t see a statement from the trial about why this was but there’s usually only two reasons. My guess is if it were suspended because all the patients did so well that everyone should be using it I would have seen that somewhere in my search. Leaving me with the suspicion that it was too toxic ending the trial early. I understand that afatinib and gemzar are 2 very different drugs but it’s a good example of phase I clinical trials where the theories and chemistry behind the idea are good enough to go to clinical trial just to end up an orphan drug (or combo in this case). Even phase III trials end with negative results. I don’t know that any oncologist would add a total unknown to a treatment that is exceeding expectations.

I hope your father does well for a long long time. As you said research is moving at a quick pace giving your father hope for further options in the future.

All best,
Janine

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