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How slow growing is NSCLC?


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My husband was diagnosed in October of this year with NSCLC, stage 3b.  He ended in the intensive care and was intubated for 17 hours because he bled during the 4th pass of the bronchoscopy.  He had thoracentesis in mid-November where 576 ml of fluid was drained from his right pleura.  The fluid tested positive for cancer which means he has advanced to stage 4.

Does anyone have a similar experience where your cancer advanced to the next stage in just a month?  I am beginning to wonder if that bleeding during the bronchoscopy was what did it.  If you have the same experience, I would like to ask what treatment you are doing, supplements you are taking, and whatever else you think has contributed to prolonging your life.

I feel so angry, weak, and powerless.  I am so lost and my world is crumbling down fast.  Our medical oncologist told us that there is no more cure.  So, no radiation, only chemotherapy using carboplatin and alimta and immunotherapy using Keytruda.

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I'm so sorry to hear that your husband progressed so quickly.  LUNGevity has a few services that can help support you both.  The HELPLine is staffed with oncologist social workers and can help you manage your emotional, financial, and support challenges.  LifeLine is a peer-to-peer mentoring program that will match patients and/or caregivers with someone who is the same age, gender and going through similar treatment.  It's one on on so you can communicate via email or phone, however you are the most comfortable.

There are also clinical trial finders and clinical trial ambassadors if that is something your husband is considering.  Information about clinical trials can be found here: https://lungevity.org/for-patients-caregivers/lung-cancer-101/treatment-options/clinical-trials

Did they do biomarker testing?

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Liveurlife,

I understand the shock. My mom went from Stage 1 before surgery to a 3a during surgery (they found more cancer during surgery).  It was a punch to the gut.  But with today's advancements in treatment, a late stage diagnosis does not carry the death sentence it once did a few years ago.  My mom is 4 years out of her original diagnosis.  Yes it came back, and yes she had to have more treatment, but she is out of treatment and is NED (no evidence of disease).  

I can't venture to guess what the cause of your husband's pleural effusion was, my mom had a few bouts with pleural effusions although none were found to have cancers cells in them.  

I totally get your anger and feeling of powerlessness.  I think we all feel it whether we are the one with cancer or the caregiver.  It's a normal part of the process of being diagnosed with a serious condition.  But as I said before, there has been great advancements in treatment which gives us all HOPE.  The good news is that your husband will benefit from these treatment advances.  It sounds like your husband will receive the current standard of care for late stage diagnoses. It was just 3 years ago when my mom was told her best bet for treating her lung cancer recurrence was Keytruda + carbo + alimta (it has just been "approved" 1 month prior to her diagnosis).  Many, many people have benefited from this treatment combo, including my mom.  She responded so well that she only had to receive 6 doses of keytruda + chemo before she went to keytruda only.  Her treatment was not a walk in the park, but she regularly says that when her lung cancer comes back, she would definitely do it all again.  I kept track of my mom's story here on the forums. You can read it  here.

I came here looking for HOPE and I found it.  I hope you are able to do the same.  

Take Care,

Steff

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Liveurlife,

A long while ago, my medical oncologist told me their practice would no longer use the word "cure" for any stage or type of lung cancer. Part of what makes our disease so dangerous is its propensity to recur.  I had four and each was a kick in the teeth. Therefore, I get your anger and powerlessness but ask you to think a while about weakness.  Your husband is going to look to you for strength. He'll need to lean on you and gain courage to sustain the treatment battle. While you may not have power or control over his cancer, treatments or outcome, you absolutely are in charge of your attitude.  I say: stand up, put your battle rattle on, lock and load, and proceed to decisively engage his lung cancer! You must have faith his treatment will work and once you have faith, you'll find hope.

Stay the course.

Tom

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If you haven't done so with your oncologist, it might be worth getting your husband to do a genomic test (e.g. Next Generation Sequencing). This might uncover mutations and relevant treatment options. 

If NGS is not an option, then maybe just test for the more well-known mutations such as ALK and EGFR. If he tests positive for either of these, then targetted therapy becomes another treatment option for him.

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