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Newly diagnosed


NGW

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Hi, I was recently diagnosed with Stage 4 NSCLC. Tests ruled out the most common genetic mutations but the biopsy didn’t have enough tissue to make sure about some of the rarer mutations. I don’t know why the biopsy failed. One doctor thinks I should have another biopsy done the other doesn't. What makes a biopsy fail?. Thoughts anyone? 

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I'm so sorry you have conflicting information from doctors.  It's tough enough to make decisions.  I wonder if both doctors agree on a treatment plan.  Sending soft hugs and prayers.

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They weren't sure if I had enough tissue either from my bronchoscopy, (they did) but told me I would just have to have another  biopsy if that was the case.  In my case they were not even looking for cancer. 

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NGW,

Welcome here.

What subtype of NSCLC was diagnosed: adenocarcinoma, squamous cell or large cell?  If the subtype is identified from the biopsy,  I'd press for designing a treatment plan and performing a second biopsy. Then I'd start treatment while the second biopsy is scheduled.

Did he have a needle biopsy? If so, sometimes this type does not obtain enough material for both a visual examination and laboratory testing. 

Stay the course.

Tom 

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Hi, 

Thanks for the response. It is adenocarcinoma. I had a broncosophy where they put a tube down my throat. I did start treatment while I decide. They are treating me with Pembrolizuman (Keytruda), Pemetrexed, and Carboplatin. I still have to look all this up. It seems that people get really familiar with the vocabulary. 

 

Thanks again 

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Hello there and Welcome!

You're absolutely right, this is learning a whole new language, unfortunately we are thrown into the deep end of the pool upon diagnosis. 

Your proposed treatment plan is sometimes referred to as the triple combo with two chemo agents (Carbo and Altima) and a immunotherapy- Keytrudra.  It’s the NCCN standard of care when there isn’t a targetable mutation. As Tom points out, finding out if there is a “driver mutation” is really critical to the effectiveness of the treatment plan.  It may be worth considering a needle biopsy (if this can be done).  Targeted therapies for driver mutations are pills taken every day. 

Most people start the triple combo right away to alleviate symptoms until the biomarker testing comes back in about three weeks.  

Let us know what questions you have and we’ll do our best. 

Michelle

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I had chemo with Carbo and Altima last year.  Altima went in fast and it helped to suck on ginger candy while that was happening.  Drink lots of water during chemo treatment. I took prescription med for nausea as soon as I felt a twinge of nausea....usually second or third day after chemo.  I had pneumonia after first treatment which hung on for 5 weeks.  I made sure I was well enough for next treatment.  Sending soft hugs and prayers.

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Wow! Pneumonia on top of this would be tough. Soft hugs to you. 

I decided to do the second biopsy sooner rather than later so that I’ll have more resilience to get through it. I hope I’m making the right decision. 

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NGW,

Glad to hear that a treatment plan is in place and you are pursuing another biopsy.  With all of the new biomarker and mutation testing, it will benefit you to have a full work-up.  

I think everyone here have questioned their decisions during their diagnosis and treatment as you are.  So much information is thrown at you and many times is sounds like a foreign language.  As you ease into your treatment plan, things will settle down, at least it did for my mom.  She received the same treatment for her lung cancer recurrence that you are currently planned for.  She had great success with it, like many others.  She took a total of 6 Keytruda + chemo infusions and then went on to Keytruda only for about 1 year.  She has had no evidence of active cancer for over 1 year (it might be close to 2 years, I need to check my math!).  My mom ultimately went off of Keytruda due to side effects, but many people are able to stay on the drug for quite a long time, with minimal side effects.  If this is indeed the treatment you will continue with, you are receiving the standard of care. 

Here's the basics of your treatment plan: basically, Keytruda will ramp up your immune system to kill cancer cells and the chemo will move throughout the bloodstream cleaning up any straggling cancer cells hanging out (that is how it was described to us anyway!).  If you have a high PD-L1 score, this means that the cancer cells are really good at hiding, Keytruda specifically removes the cancer's ability to hide so your immune system can find it and kill it.  Should your lung cancer be a good fit for this treatment, you are in good hands with it (that's my opinion anyway!).

Please keep us posted throughout your journey and please know we are here to help any way we can! 

Take Care,

Steff

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