How long can someone remain NED with Stage IV NSCLC? - 1257131

justme
Posts:2

As a young female never smoker, I had a complicated path to diagnosis of squamous cell lung cancer in January 10 which resulted in a upper left lobectomy and a Stage 1B diagnosis. My symptoms returned just one month later and by April 10 I had seven tumours in my left lung lining and was downgraded to Stage IV (as I had recurrence within 1 year of original diagnosis, as I understand it). I was told the cancer was agressive and I had just months to live prior to treatment.

I was treated with Gemcitabine and Cisplation IV infusion for 5 cycles (I couldn't tolerate a 6th). In August 10 a scan confirmed I had a complete response to the treatment. I have had no maintenance since and my last CT scan, in Jan 13, was still clear.

I know I am in a position many reading this must wish for but I can't help wondering how long can my NED status last? Is there any documentation on this? The longer this goes on the more I think my family & friends think I am 'cured' but I feel like I am constantly waiting for the inevitable. In a strange way, if I had some idea of a timeframe I think I could cope easier.

Thanks to anyone for any advice they can offer (and yes, I know I should (and I do) enjoy my rather enviable status so please don't think I am complaining... I am truly grateful for my extra time with my young child).

Thanks for reading.

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Reply # - June 9, 2013, 10:41 AM

catdander
Posts:

Justme, please don't apologize for being in this position. I understand though why you feel the need. My husband is in a very similar situation. As you can read from my signature he's been NED for almost a year without treatment. Too I know it doesn't bring an end to the trauma you must feel "waiting for the other shoe to drop".

The unfortunate answer to your question is there isn't an answer. There arent enough people to reach that place to say anything specific You may be cured (the hope I use to move through my days) or the cancer is very indolent and responded well to treatment. Either way you're/we are in a good position relatively speaking because it will most likely repond well to future treatment.

As far as future treatment have you been tested for EGFR mutation? Not a usual mutation found in squamous but we do have a member with squamous cell and EGFR positive...she too is a never smoker and in her 40s when dx.

I'm sorry there is no answer but hope you are able to move into a more living your life with your children.

All best
Janine
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Reply # - June 9, 2013, 02:15 PM

Dr West
Posts: 4735

Of course, you know it's an uncommon (though enviable) situation, which is why there is really no way to give an answer about what would be expected. I'll say that I favor more frequent scans than every 4-6 months for someone with known advanced NSCLC, even if it has responded well, so it's a long interval to go this far from January without a repeat scan. That said, the longer you go doing well, the longer you're likely to continue to do well...but before anyone could do much prognosticating, it's really important to know if anything has changed since your last scan 5 months ago.

Good luck.

-Dr. West

Reply # - June 9, 2013, 02:17 PM

Dr West
Posts: 4735

I also agree that while the guidelines for molecular marker testing focus on this being a standard for patients with non-squamous NSCLC, I think most experts put an asterisk next to the squamous designation if the patient is a never or minimal prior smoker, favoring molecular marker testing for EGFR mutation, ALK rearrangement, etc. in this unusual situation.

-Dr. West

Reply # - June 9, 2013, 02:38 PM

justme
Posts: 2

Many thanks for the understanding and helpful replies.

I had a 'clear' xray last month and am due a further CT scan in August. My oncologist moved me to six monthly scans because, I am told, of the level of exposure to radiation that would come with more frequent scans so I alternate CTs with contrast and xrays during my quarterly check ups.

I have tested negative for ALK, EGFR and K-Ras. I have no family history of lung cancer and was raised in a never-smoking household too.

I was diagnosed aged 31.

I suppose I am an anomoly of sorts. However, as I understand it when the cancer returns my second line treatment options would be limited because I do not have an as-yet-discovered genetic mutation with targeted therapy - is this correct?

Thanks once again for your help.

Reply # - June 9, 2013, 02:44 PM

certain spring
Posts: 762

Actually I think there's good reason to believe that by the time your cancer eventually returns - I hope a long way off - progress will have been made in identifying "druggable" targets in squamous cell cancer. I am sure Dr West will confirm that there is quite a lot of research activity in this area. Best of luck.

Reply # - June 9, 2013, 09:13 PM

Dr West
Posts: 4735

I'd say that there's far, far more enthusiasm for future options in squamous NSCLC than ever before. There are a lot of new research angles that may translate to new treatment options for patients with squamous NSCLC in coming years.

-Dr. West

Reply # - June 10, 2013, 07:39 AM

luke
Posts: 101

Justme, I am truly sorry to hear of your diagnosis but I am also grateful to hear that you have a complete response to your first line. This, as I am sure you are already aware, is a remarkable and very enviable outcome for which many of us can only hope.

An adage I have frequently come across on the forums is 'responders respond'. What are you if not a responder? If others with observable but stable disease can go on to live lives without any meaningful 'cut-off' dates, why not you?

The road ahead will not always be easy, but it will be one we walk together.

Reply # - June 12, 2013, 10:59 PM

bh
Posts: 66

Justme, glad you are NED and hope you remain NED for a long, long time.

Strange, but I came on the forum after a very long time for the very same reason. Mom has been without any treatment since April of 2012 and was at first having scans every 3 months, her doctor moved the scans to six month intervals this January. Her next onc appointment is in July but her CT is scheduled a little early this Friday and I am beginning to grow anxious. She has been without any symptoms all this time except this past month, she coughs ever so slightly, ever so infrequently at night and keeps clearing her throat as if it to get rid of phlegm and I am scared that maybe the cancer is rearing its head again. She says she has slight irritation in her throat when she lies down.

Reply # - June 13, 2013, 05:26 AM

lindy
Posts: 24

Hi justme,
As everyone has eluded, sadly, there are not many people in the same situation as you...BUT who says it is even going to come back...It just might never come back...or IF it does, it will be soooo far off, that there will be something else to throw at it and keep it at bay...

I am hoping that my Mum will be in the same situation as you soon too...

I hope it NEVER comes back and that you watch and enjoy your children grow.

Lindy

Reply # - June 13, 2013, 01:06 PM

marisa93
Posts: 215

justme,

While I'm sorry to hear of your diagnosis at such a young age, I am very happy to hear of the wonderful response you had to treatment! I hope you continue to enjoy a NED life with your child for a very long time to come!!!!!

Best of wishes,
Lisa

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