My wife NSCLC w/brain mets

Thanks guys, she really is one tough cookie and she has been thru a lot.

Steroids were her salvation during her living hell of "vertigo" and migranes, but after 3 months on them, she is now a diabetic, having to take injections of novalog on a sliding scale and lantis every night.  She keeps forming blood clots; started with 3 in her right arm, so the docs put her on blood thinners including lovanox injections in her belly twice a day for a week or two.  The last CT scan showed they had disappeared, but found 3 more; one in each lung and one in her femoral artery, so it was back to the lovenox again

She is on high powered anti-nausea medicines, one being an anti-psychotic called Compazine, so chemo hasn't made her puke her guts up as we were expecting, but it still leaves her feeling crummy a couple of days later and her legs and feet swell as if they will burst.  The infection from the VAD was bad, but the 4 weeks without chemo was wonderful

She had lost some fine motor skill function on her left side after brain surgery and still hasn't fully regained that yet, hopefully therapy will help, but her neurosurgeon says it may be permanant since they had to damage/remove some healthy brain tissue to get to the tumor.

We can be a pain in the rear to her doctors sometimes, because we ask lots and lots of questions.  We didn't click at all with the radiation oncologist they initially assigned to her in the hospital because after our questions started, he said we shouldn't read so much.  Goodbye doctor Reed   She is an awesome self-advocate and I try to take up the slack when she is feeling too crummy to fight the docs   We try to take nothing for granted and never let docs make decisions for her without thorough discussion.

She says that no matter the outcome, she will not take anymore chemo after this round of 12-14 is over, but I think she will reconsider if they give her a good long break.  She is so tired of doctors and feeling bad and being stuck 1000 times.

We have had so many miracles so far; she could have just switched off before she ever had brain surgery; she could have easily died from staph in her blood; there are too many miracles to name, but suffice to say, We know that we serve an awesome God!  There have been so many people praying for her since this started, so many people that we didn't even know.

Thank you God for my wonderful wife!

CraiginPA said:

adenocarcinoma mutations

Jasper County Native,

It sounds like there might be ALK "copy number gain" (I think this is also called amplification), but that might not be what is driving the cancer.  Normally I wouldn't guess it'd be useful because too many copies of regular ALK would still turn off or on as needed instead of being locked "on" all the time like an ALK fusion mutation might be.  But at 100% of cancer cells with copy number gain sounds unusual.  You or your oncologist might consider asking top ALK expert Dr. Shaw (MGH, Boston) if there's anything useful in that or if suggests what the real driving mutation might be.

If the ALK amp (amplification) is not the issue, we'd still have the question of what is the driving mutation and is it a useful one.  Does she have a history of smoking?  The not-so-useful-yet KRAS mutation is common in smokers.

Never-smokers who don't have KRAS, EGFR, or ALK have a fair chance of having a very rare ROS1 mutation.  Dr. Shaw found my ROS1 mutation back when almost nobody new about ROS1's usefulness, and I've been successfully treated in her clinical trial for that for more than 1-1/3 years so far.  (I'm grateful that the MGH cancer center, a Harvard-affliated one, had the foresight to start testing for a wide range of mutations early and use that as a base for their research.)  Dr. Shaw also is doing promising research on an another very rare one called RET that I hope we'll hear more about soon.

There's some other rare ones in other experimental trials, too -- HER2, MET, BRAF.  Even the difficult to target KRAS has had experimental trials, with only modest success but they are making progress on figuring out how to crack that nut.  Of course there's others that re unknown or unidentifiable or not useful even for trials yet, but if it's a useful one it might be worth knowing.  Most local community oncologists assume patients would not be willing to travel to experimental clinical trials and so only test for things they can treat or which have trials nearby, but that might change if you ask.  It sure made a big difference for me, but I'm a younger-than-average never-smoker with no known risk factors.

Keep in mind that this driving mutation talk isn't about a cure.  If there's a useful mutation it might be inhibited for a number of months with pills with usually managable side effects (and almost none in  my case, so I seem pretty much normal), and maybe for months longer with a 2nd generation drug.  And you'd still have all the other treatment options available to try that aren't specific to a particular driving mutation.

Best hopes,

Craig in PA

 

Thanks for the info Craig, 

Hopefully the Taxol/Carbo are doing their jobs and we won't have to worry about backup plans.

Praise the Lord!  My wife met with her oncologist today to go over her most recent CT scans and to see where we go from here.  Her scans showed everything is shrinking, which we knew since we got report over a week ago.  Her doc thinks that since everything is "stable"/shrinking, that she doesn't need to start another round of chemo, of course he wants her back for scans frequently to keep tabs oh her, but for now; NO CHEMO!!!!