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NikkiCJ

My mom is newly diagnosed with Stage IV NSCLC, looking for advice

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Hi all, I'm new to the forum.  On December 12th, my mom was diagnosed with Stage IV NSCLC.  Tumor pathology: non-squamous adenocarcinoma, PD-L1 less than 1%, and negative for all targetable mutations.  

She has 2 spots on her lung, with 1 tumor on a nearby  lymph node, 1 tumor on her left adrenal gland, and at least 10, but potentially 12, brain mets.  The brain mets are scattered throughout her brain - several in the frontal lobe, at least one in her left parietal, and at least one right on top of her cerebellum. My father took her to the ER on 12/6 with major neurological symptoms (she insisted she was fine, despite the fact that her right hand wouldn't function), which was the beginning of this entire whirlwind.  Mom has handled the news exceedingly well - partly because she's tough and no-nonsense and partly because the tumors in her frontal lobe help her out in this respect (hence, her thinking she was fine even while knowing her right hand wouldn't work).  She spent 1 weeks in the hospital on intense steroids to reduce swelling, and then a week in inpatient rehab to help her regain right hand function and improve her balance, etc.  While still in rehab, she began whole brain radiation.  She came home on 12/22 and just finished treatment on 1/3.  She tolerated radiation well and is doing better every day.

We are now weighing next steps.  Quality of life is my mom's priority.  She has amazingly and fortunately experienced no pain so far.  She is not interested in clinical trials.  (I'm a scientist and a former researcher, so I am very pro clinical trials as a general philosophy but I 100% support my mom in her choice, so I'm not even going there).   To quote her, “I’m in no pain, I’m not nauseous, I don’t feel sick, and I intend to keep it that way.”

Her doc is recommending 4 to 6 cycles of Carboplatin, Pemetrexed (Alimta), and Pembrolizumab (Keytruda).  She’s debating it.  Does anyone out there have an experience with this treatment regimen that you are willing to share with me? 

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Welcome Nikki,

Sorry to learn of your mother's diagnosis.  But, glad to know she's finished whole brain radiation without adverse impact.  That indeed is good news.

I don't have actual experience with conventional chemotherapy and immunotherapy.  While it has now become a first-line standard of care, I was diagnosed in 2004 and in those days Taxol and Carboplatin was about the only treatment for my NSCLC, squamous cell.  My reading suggests that Keytruda with combination conventional chemotherapy can be very effective.  I'm sure forum members who've received this treatment will chime in with their actual experience.

Have you discussed precision radiation with the radiation oncologist who administered her whole brain radiation? Seminars I've attended report radiation oncologists are getting very aggressive treating widely spread small tumors with precision radiation. In fact, several forum members have had this treatment.  As I understand it, precision radiation could be administered before, during or after chemotherapy. Here is more information about precision radiation. (read the right arrow "What are the different types of  external beam radiation therapies" and note IGRT, SBRT and IMRT).

I note you live in Pennsylvania.  If your mom lives nearby, you may be interested in the National Cancer Institute Intramural Cancer Treatment Program.  Here is information you may find useful.

As concerns your mothers desire to not feel sick, there are very effective remedies for most chemo-induced side effects.  I'm sure forum members who've had this combination will report information on their side-effect experience.  

Again welcome here.  A cancer diagnosis is not good news but many of us a long tenured survivors with stage IV disease.

Stay the course.

Tom

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Nikki,

I am so very sorry to hear about your mom's diagnosis.  I too am a daughter of a mom with advanced stage lung cancer.  My mom is non small cell adenocarcinoma, she is currently dealing with her 1st recurrence of it.  For this bout, my mom received carbo+alimta+ keytruda.  Her PD-L1 is over 90%.  She received 6 cycles of the chemo + Keytruda, then went on to about 1 year of Keytruda only.  She is currently on a treatment break due to side effects.  You can check out the first year of my mom's treatment here. [/url}

My mom handled platinum-based chemo very well during her first bout of treatment, in 2016.  The worst side effect she had from it was severe acid reflux.  Other than that, she did great.  This time though, my mom didn't do as well.  She had flu like symptoms for about 10 days after the 2nd infusion.  So she felt crappy for about 50 days out of the 6 months of combination treatment.  The most important thing is that there has been no evidence of disease for nearly 1 year.  -I say this with hesitation because she will receive the results of her 3 month CT scan tomorrow and I'm always scared I might jinx her good news!

If you have more questions about my mom's journey, I'm happy to share.

Take care,

Steff

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