Stage IV Superhero Success Stories Needed

[DrBee]

Hi friends! Apologies for the length of this post and for pasting a couple of paras from an earlir post. 

As I've written elsewhere, my superman hubby (49, I'm 45, both lifelong runners and nonsmokers) was diagnosed with NSCLC last week after several weeks of coughing which lead to scans and biopsy.  Yesterday we had PET and first meeting with oncologist. 

Good news: brain MRI clear, PET clear in terms of spread to other organs, but due to spread to 1 supraclavicular and several axillary lymph node we're classed as stage IV. (lymph node involvement outside the chest wall is considered metastases). It seems to be a pretty aggressive cancer so chemo starts next week. We are excited to get underway!

In the meantime, I would love to hear from longterm survivors  diagnosed at IV, and also if they have ever been declared NED. (Thanks to Roz and Tom for the quick replies elsewhere!) I know Susan was.   I am sure some others of you have told me you were diagnosed at this stage and I am just having swiss cheese brain today).

Good news: Starting so soon! Our oncologist, who I really liked, suggested we will basically be in treatment til it stops working, then try something else. (Sounds like this is the common approach to Stage IV? My bestie who had breast cancer two years ago thought that stage IV was in part defined by always basically being in treatment, as well as by spread of disease).  Starting with chemo (carbo and alimta) plus keytruda every three weeks.  After 4 treatments we lose the carbo and go to stick with just the pemetrexed instead.  But he basically didn't give an end date  - said we will be doing this until it stops working. 

Good news: Apparently DH's PDL1 test score was 99%+ so excellent chance of responding to Keytruda.

Less awesome news: (On the other hand, apparently Veristrat indicated he had only a 10% chance of responding to the chemos for which it tests sensitivity...I am confused and a little freaked out that this means most chemos (?) won't work for him...not sure if am interpreting the test right, but I should probably start a different thread for that. 

Other less awesome news: I was a bit troubled that doc said he didn't see radiation or surgery as potentially "curative" in our situation,  and might be considered for palliative reasons only. I was so surprised because so many folks seem to have had success with cyberknife, traditional radiation, and surgeries here.  I don't know if having lymph nodes somewhat widely distributed was reason for this, and if we're likely to be able to get him to reconsider later. I know some of you have pushed for surgery, and would appreciate input on that at some point.

 Am I kidding myself that there's a good chance I'll get to keep this guy around for at least a couple of years, and perhaps significantly longer?  That he may start feeling better, lose the current cough and be able to return to some kind of exercise? I realise each of these questions needs to be researched here....I'm sure answers are already here somewhere. 

Much love to this whole community. 

[LexieCat]

No, I don't think you're kidding yourself to have hope for that.  The problem really is that even with all the available tests, research, and treatments, nobody can predict with certainty how each person's cancer will respond.  Sometimes things that absolutely "should" work don't, and long shots sometimes pay off beautifully.  Everybody's going on statistical probabilities, which don't account for the tons of people outside the main statistical groupings--sort of what the Gould thing is talking about.  And why it's impossible to predict what course of treatment might lie ahead.  Keep someone alive and reasonably well for a couple of years and there's a good chance there will be new advances to try.  

Believe me, I appreciate how difficult your situation must be.  I never cease to be thankful that my own experience has been so relatively simple and uneventful.  I need to keep in mind that that COULD change in the future.  Even people like me, Stage I with apparently curative treatment, sometimes experience recurrences down the road, or even new cancers.  I was a heavy smoker for decades, so I'll remain at risk for the rest of my life.  All I can do is to keep an eye on things and hope for the best.  Still, it's much different when you're facing the immediacy of an advanced cancer.  I can't pretend I know what it's like to be in your husband's shoes, but he's lucky to have an advocate like you on his team.   

Keep making those lists of questions and, as Tom suggested, don't be afraid to get second opinions.  The more brains and experience we can bring to bear on this disease, the better.

[DrBee]

37 minutes ago, LexieCat said:

No, I don't think you're kidding yourself to have hope for that.  The problem really is that even with all the available tests, research, and treatments, nobody can predict with certainty how each person's cancer will respond.  Sometimes things that absolutely "should" work don't, and long shots sometimes pay off beautifully.  Everybody's going on statistical probabilities, which don't account for the tons of people outside the main statistical groupings--sort of what the Gould thing is talking about.  And why it's impossible to predict what course of treatment might lie ahead.  Keep someone alive and reasonably well for a couple of years and there's a good chance there will be new advances to try.  

Believe me, I appreciate how difficult your situation must be.  I never cease to be thankful that my own experience has been so relatively simple and uneventful.  I need to keep in mind that that COULD change in the future.  Even people like me, Stage I with apparently curative treatment, sometimes experience recurrences down the road, or even new cancers.  I was a heavy smoker for decades, so I'll remain at risk for the rest of my life.  All I can do is to keep an eye on things and hope for the best.  Still, it's much different when you're facing the immediacy of an advanced cancer.  I can't pretend I know what it's like to be in your husband's shoes, but he's lucky to have an advocate like you on his team.   

Keep making those lists of questions and, as Tom suggested, don't be afraid to get second opinions.  The more brains and experience we can bring to bear on this disease, the better.

Will reply further soon, but in the meantime HAPPY BIRTHDAY! Enjoy Hamilton, lucky duck! 

[Susan Cornett]

I think most oncologists prefer to shrink a tumor through chemo/radiation before trying to remove it surgically.  The smaller it is to remove, I have to think the easier it is.  ut I'm not a doctor and this is just my guess.  Had my team known that my mass was cancer, I don't believe they would have performed surgery before chemo.  It was a large mass (think racquetball) and was a little challenging to remove.  But I consider myself fortunate that I had the surgery because it removed so much of the cancer.  Unfortunately some of those sneaky cancer cells had relocated to lymph nodes and my thyroid.  Super Doc told me that he doesn't have stats for my situation because it has been unique with surgery to remove the primary tumor, surgery to remove the metastatic tumor, and good results with other treatment. 

As you start down this chemo path, check out www.chemocare.com.  That site is hosted by Cleveland Clinic and provides information by chemo drug for anticipated side effects and suggested remedies.  Also, tell hubby that he should not be shy about asking his team for meds to get through the chemo.  My first round caused nausea, but because Super Doc prescribed two different meds, I was able to alternate the meds and didn't get the full brunt of the nausea.  With my second round of chemo, I had significant bone pain and I wasted NO time in requesting pain meds when choking down 4 Advil just wouldn't cut it. 

Your husband will likely experience chemo brain and it is a very real and very frustrating side effect.  I've never been forgetful in my life, never been disorganized, never been at a loss for words but goodness chemo brain changed all of that.  He just needs patience - it will pass.

 

[Tom Galli]

Bethany,

Right. Chemobrain.  That is a thing. He should forget working Maxwell’s Equations for a while during and for some period after conventional chemotherapy (Carboplatin and Altima). 

Stay the course. 

Tom

[DrBee]

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