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tom30

new to stage 4 lung cancer

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hi, i was recently diagnosed with stage 4 lung cancer which has spread to the brain.  I'm having difficulty processing the prognosis.  I just laid out the reports I have,  net is they did EKGs which seem ok, I was diagnosed with stage 4 lung cancer left lung 2.5 * 2.1 cm, and some tiny ones , 2 growths in the brain.  I feel like crap, can't breath, cough not able to walk.  I'm beimg treated at MSK.  I'm on a lot of meds , predisone, lovenox, morphine, about a dozen others.  I'm hoping for a return to some function, i had multiple radiation treatments to shrink lung masses which are causing breathing difficulties, scheduled for first meeting with chemo doc on Thursday and then scheduled for radiation for next week on my brain,  

questions are ... I'm all in... what ever it takes to get some normalcy   problem is i don't know what that is. follow protocale then clean up diet as i have read or what can anyone else suggest.   any replies will be appreciated...

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Hi Tom,

Welcome! My Mom was diagnosed with NSCLC adenocarcinoma in December of last year.  They originally staged her at around a stage 2-3 based on imaging, however after they did a preliminary brain scan ahead of her starting chemo they found a mass in her brain so she immediately became stage 4.  Her treatment protocol was slightly different than yours.  

She ended up having brain surgery on her mass, followed by 6 chemo treatments (Carboplatin and Alimta) and 35 radiation treatments on her lung (she wasn't a surgical candidate due to lung function) and then also had a Cyberknife radiation treatment on her brain.   In July, she was declared as No Evidence of Disease (NED), however just after Thanksgiving we found out that the cancer is back in her lungs (no other masses) so she just started her second round of chemo with a different drug combination on Monday.  She also has not been taking the same medications as you are. She's currently only taking Percocet, Compazine (For nausea) and was previously on folic acid (for chemo) and was briefly on Keppra to prevent possible seizures just after brain surgery and again when she had a surgery going under anesthesia for her port insertion. 

Each journey is different I think for everyone, but the important thing to know is that there are treatments and it is possible, even at Stage 4 to get to No Evidence of Disease. I'm new too, but since joining I've seen that there are quite a few long term survivors out there.

Keep your head up, remain positive and take in as much information as you can so you can know your options. There are a lot of resources available through Lungevity even (including Lung Cancer 101). There are a lot of other folks on here who can give you even more information than I can as well as I'm still learning to navigate this all as a caregiver in the best way possible. 

Do you know if the plan is to do Whole Brain Radiation (WBRT) or some other type of treatment like radiosurgery?

I'm not going through what you're going through or what other survivors are going through but if you have questions about treatments etc I'm happy to share more with you if you want.  Wishing you all the best in your journey.

Maigan

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Hi Tom,

Welcome here. I'm sorry to hear about your disease and that you're having so many difficulties. I second everything that Maigan said. This forum is an excellent place to find information, support and hope. You'll find others here who have been diagnosed with advanced disease and are doing well.

Hang in there and  please keep us up to date.

Bridget O

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Tom,

Welcome here.  We share both a name and a diagnosis but you did not report the type of lung cancer you have.  Have you had a biopsy to confirm your type?

So you are all in, and that is a good thing.  You'll need to be.  Take some time to look around this forum and hopefully you will conclude there are many with length periods of surviving after diagnosis.  That being the case, you can properly conclude that if we can survive, so can you!

Do I correctly understand you have a tumor in one lung (left) and two small mets in the brain?  What type of radiation are you having now for your lung?  Do you know what type is forecasted for the brain mets?  I know many who've been successfully treated for brain mets by radiation. Do you have complicating medical problems that is effecting your ability to breathe? Is a pulmonologist on your treatment team?  A pulmonologist ought to be able to prescribe inhalers to ease your breathing difficulty.

So, here are my suggestions.  Read this.  Then relax a bit.  Spend some time to learn about lung cancer here so you can be prepared to understand treatment alternatives and ask questions during consultations.  Treatment alternatives, especially those just emerging from trials and research, are type dependent.  For example if you have non small cell adenocarcinoma lung cancer, new targeted therapy treatment may be available.  But this is dependent on your biopsy sample being tested for certain biologic markers.  Moreover, new immunotherapy treatments are available to treat both adenocarcinoma and squamous cell lung cancers but again, your tumor biopsy requires special testing to determine suitability.  

I hope this helps.

Stay the course.

Tom

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I am so sorry to hear what you are going through you will be in my prayers. I know this is a scary road, but try to stay positive.                     Jane

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