Non small cell lung cancer with brain lesions

dennycee said:

Welcome to the lung cancer boards.
The life expectancy you read about is based on the experiences of hundreds of thousands of patients and their outcomes charted on a bell curve. There is no way to tell where your mom will come out on that curve. As you explore check out the inspire.com website. While there search for entries by stage4survivor. He no longer participates there but his entries remain. His stage 4 adenocarcinoma was discovered because he was having cognitive issues. It turned out he had several brain mets with the lung primary. That was 17 years ago and he's still kicking.
In the past year there have been 6 new treatments approved for lung cancer. A couple of them cross the blood brain barrier and can prevent mets from developing or getting larger. The key to treatment is based on the testing of the cancer to learn where the DNA got screwed up.

Have they gotten back the results of the mutation testing yet?

Dennycee-I'm so sorry. I accidentally just flagged your post. I thought I was just saving it as an archive so I could read it again later (my mom just started radiation treatment for Stage IV SCLC with brain and spine mets and they will be doing genetic testing next. So I wanted to go back to re read your post again at some point. )  Good luck to you and again, my apologies!

dstaton said:

Maybe not so grim after all.

Hi Lisa -

I was diagnosed with StageIV with brain mets last May, and the prognosis for your mom maybe be better than you think.  If she only has tumors in her lung and brain, this is a fairly rare situation called "Oligometastastasis".  That's a fancy term for having only one metastasis.  Since mine was also in the brain, the oncologist wanted to go after that one first, as it was affecting my speech, balance, and other motor functions.  We discussed whole brain radiation, brain surgery, and radiotactic surgery (in my case the brand name was Gamma Knife.)  Since the downside of whole brain radiation didn't appeal to me, and cutting my head open was, well, cutting my head open, we opted for the Gamma Knife.  After the gamma rays cooked the tumor, we began platinum based chemo (Carboplatin and Pemetrexed).  The lung tumor shrunk to the point that it was ready for surgery.  

Again, we discussed options.  The surgeon initially suggested a wedge resection, which would cut out a part of my lung around the tumor.  However, I personally thought if you're going that far, she might as well take out the whole lobe to make sure it was all gone.  Plus, to a non-doctor like myself, it seemed simpler for her to cut along the lobe rather than cut out a wedge.  She agreed, so that's what we did.

Before and after surgery, my wife and I hounded both my general oncologist and the surgeon to do genomic testing on the tumor, as last year, nivolumab had just been fast-tracked by the FDA for approval.  Not that we didn't expect the treatments to work, but I always feel better if I have a next step in mind, and hope I don't need it.  After a couple of months of reminding them, they finally sent out a sample for testing.

Then more mets started popping up, but still only in my brain.  Did two more rounds of Gamma Knife to get rid of them, and my oncologist wanted to "wait and see" what happened over the next few months.  Well, since the brain mets were coming weeks apart, we said our goodbyes followed our radiology oncologist to another facility.

We went to the general oncologist, armed with a box of files, including the hard fought genomic testing results.  The first question she asked was, "why aren't you on Opdivo" (Bristol-Myers Squbb brand name for nivolumab).  Turns out I was in another rare case, where 20% of NSCLC patients have the PDL-1 protein marker that allows Opdivo to do its work.  The PDL-1 "hides" the tumors so the immune system ignores them.  Opdivo removes the protein hiding the tumors, and kicks up your immune system.

Now while the day to day side effects of my twice monthly Opdivo infusions are a piece of cake compared to the traditional chemo I had before, it is not without risks, so don't think I'm touting it as a miracle.  Each of us is different, and what cures one person might well kill another.  But in my case, it is working.  Right before I started, I noticed a new tumor ouside my lung.  The oncologist wanted to leave it alone to see if the Opdivo did anything.  It got bitter right after starting Opdivo, then disappeared completely in about two weeks.

So back to the main point:  Oligometastasis is a good thing.  Offers a remote chance of a cure, and a better chance of survival.  Just google it and your head will be swimming with medical jargon before you know it.

If your mom's oncologist hasn't heard of it, maybe it's time to shop around for another one.  In the meantime, I'm going on a limb and suggest strongly that you get the primary tumor in her lung genomically tested.  She may not have the PDL-1 or PD1 protein, but there are some mutations it may have that will widen her treatment options.

I have no idea what the future holds.  The first oncologist that saw me in the ER when I was diagnosed, told us not to make plans for Christmas last year.  Today I am currently in NED, and doing my best to stay that way.

Best to you and your mom,
Dale

dstaton, Great reading So Happy for you, Just diagnosed end of January with this cancer! Thanks so much for the great information. Keep Up the Good Work !

My mom also has non small cell lung cancer stage 4 with a brain mass, near basal ganglia. She finished her whole brain radiation in November and is due to have another MRI to see the overall progress since then. Her speech hasn't been affected much, but she is tired often (sleeps a good portion of the day), does not have the energy to walk anymore, is on medications for seizures. I'm not sure if she's getting better or worse, or if it's the medication that has her super lethargic. But I try to focus on the positive, that at least she is still here with me. Hang in there and know that you are not alone. 

dstaton said:

Maybe not so grim after all.

Hi Lisa -

I was diagnosed with StageIV with brain mets last May, and the prognosis for your mom maybe be better than you think.  If she only has tumors in her lung and brain, this is a fairly rare situation called "Oligometastastasis".  That's a fancy term for having only one metastasis.  Since mine was also in the brain, the oncologist wanted to go after that one first, as it was affecting my speech, balance, and other motor functions.  We discussed whole brain radiation, brain surgery, and radiotactic surgery (in my case the brand name was Gamma Knife.)  Since the downside of whole brain radiation didn't appeal to me, and cutting my head open was, well, cutting my head open, we opted for the Gamma Knife.  After the gamma rays cooked the tumor, we began platinum based chemo (Carboplatin and Pemetrexed).  The lung tumor shrunk to the point that it was ready for surgery.  

Again, we discussed options.  The surgeon initially suggested a wedge resection, which would cut out a part of my lung around the tumor.  However, I personally thought if you're going that far, she might as well take out the whole lobe to make sure it was all gone.  Plus, to a non-doctor like myself, it seemed simpler for her to cut along the lobe rather than cut out a wedge.  She agreed, so that's what we did.

Before and after surgery, my wife and I hounded both my general oncologist and the surgeon to do genomic testing on the tumor, as last year, nivolumab had just been fast-tracked by the FDA for approval.  Not that we didn't expect the treatments to work, but I always feel better if I have a next step in mind, and hope I don't need it.  After a couple of months of reminding them, they finally sent out a sample for testing.

Then more mets started popping up, but still only in my brain.  Did two more rounds of Gamma Knife to get rid of them, and my oncologist wanted to "wait and see" what happened over the next few months.  Well, since the brain mets were coming weeks apart, we said our goodbyes followed our radiology oncologist to another facility.

We went to the general oncologist, armed with a box of files, including the hard fought genomic testing results.  The first question she asked was, "why aren't you on Opdivo" (Bristol-Myers Squbb brand name for nivolumab).  Turns out I was in another rare case, where 20% of NSCLC patients have the PDL-1 protein marker that allows Opdivo to do its work.  The PDL-1 "hides" the tumors so the immune system ignores them.  Opdivo removes the protein hiding the tumors, and kicks up your immune system.

Now while the day to day side effects of my twice monthly Opdivo infusions are a piece of cake compared to the traditional chemo I had before, it is not without risks, so don't think I'm touting it as a miracle.  Each of us is different, and what cures one person might well kill another.  But in my case, it is working.  Right before I started, I noticed a new tumor ouside my lung.  The oncologist wanted to leave it alone to see if the Opdivo did anything.  It got bitter right after starting Opdivo, then disappeared completely in about two weeks.

So back to the main point:  Oligometastasis is a good thing.  Offers a remote chance of a cure, and a better chance of survival.  Just google it and your head will be swimming with medical jargon before you know it.

If your mom's oncologist hasn't heard of it, maybe it's time to shop around for another one.  In the meantime, I'm going on a limb and suggest strongly that you get the primary tumor in her lung genomically tested.  She may not have the PDL-1 or PD1 protein, but there are some mutations it may have that will widen her treatment options.

I have no idea what the future holds.  The first oncologist that saw me in the ER when I was diagnosed, told us not to make plans for Christmas last year.  Today I am currently in NED, and doing my best to stay that way.

Best to you and your mom,
Dale

Dale and Lisa,

I was also diagnosed with Stage 4 last October.  After testing for no PD-L1 in my blood, we started chemo.  Cancer spread quickly to my other lung and then to my brain.  Did gamma knife on brain tumor and doctor finally stopped the chemo that wasn't working.  He decided to give me immunotherapy even without the marker protein.  They found another tumor in my head 2 weeks after I started immunotherapy and this one was not growing like the first one.  Further, after 4 months of immunotherapy treatement, my cancer in my lungs is now 80% gone!  I am having no meaningful side affects besides some fatigue as the battle rages in my chest.  

They may need to rethink who is candidate for this drug without PD-L1 as it is not understood how it is working on me.  There are some very bad complications with this drug so not for everyone, but since easier than chemo, might want to think more on it being first treatment of choice.  Brain is now cancer free as my cancer is now in remission.

Good luck!

Gary