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Hi...Husband recently diagnosed NSCLC stage 4


JustMe

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Treatment starts 6/23.  Haven't told youngest daughter yet...she's only 11.

I'm blowing myself away with how tough I've been so far, but it's one of those days where I'm constantly on the verge of tears.

It's all obvious to you folks isn't it...as far as what I'm feeling.  There's no point in typing it all out. 

My husband is 44.  Tall and strong and gorgeous.

8.5cm tumor wrapped around center airways, mets to kidneys.

Treatment is keytruda/carboplatin/pemetrexed...combo just recently approved by FDA apparently?  I'm nervous about side effects. 

Meh.

Loads of love to all of you.

 

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Welcome, JustMe. You're in a hard situation. I wish you and your husband well. My cancer was found early. There are others on this forum who are,or who have partners who are Stage 4 who will be in a better position than I am to give you advice and information. I'm sure you'll hear from some of them soon. Hang in there and take care of yourself as well as your husband and daughter.

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JustMe,

Right we know how you are feeling. Stage IV is not a good place. Just two points to capture a moment of your rightly divided attention. If I can live, so can your husband, and I've read great things about Krytruda and combination conventional chemo. So hang in there. Go to LUNGEVITY.org and search on Keytruda and read the remarkable results. 

Stay the course. 

Tom

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JustMe,

Good morning.  I'm sorry about your husband's diagnosis.  Lung cancer stinks.  I was diagnosed in February 2016 following removal of my left upper lobe.  I'm currently in treatment for a recurrence.  I tell you this because, although I'm an amateur compared to others, it is possible to move forward.  I spent a good deal of time last summer in tears and mentally giving away my belongings.  I couldn't imagine that things would get better, but they did.  There are so many 10+ year late stage (III or IV) cancer survivors on this site.  There is hope.  We have more treatment options today than just three years ago.  I truly believe this diagnosis is as hard on the loved ones as it is on the patient.  

Please know that we're all here for you, your husband, and your family.  Ask us anything.  

 

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Thanks very much Bridget and Tom for your replies...

I'm feeling better today, the tougher, positive me. 

I'm encouraged from this place and seeing so many long term stage 4 survivors...

I've already read about Keytruda, but looked up more info last night.  Assuming insurance agrees to pay for the treatment, it seems like the way to go.  We are happy with the doctors here in NH and they are also affiliated with Dana-Farber in Boston so he can't receive much better care than that...2nd opinion direct from Dana-Farber is pending.

Some days, like yesterday, his cancer is all I can think about...it's overwhelming.  He's overall doing really well mentally.  The only day he really struggled was after informing his sister of his disease, she completely fell apart, wanted to know his funeral plans, talked about those fu**ing statistics we all are aware of...she scared him.  So going forward, I am going to be telling people what's going on without him being present.  It isn't worth the effect their reactions have on his nerves.

Some more details...NSCLC poorly differentiated, but likely adeno, 8.5cm tumor wrapped around center airways, mets to kidneys, inoperable, still waiting on genetic testing results, but onc thinks keytruda/carboplatin/pemetrexed is the way to go regardless of mutations...apparently certain mutations are rare in former smokers/men...?  Treatment is planned for once every 3 weeks with a CT scan after 6 weeks.

He's currently on 20mg of prednisone and an inhaler to control the cough and help his breathing, he's working still.  His cough and breathing have gotten worse the past couple days so I'm keeping an eye on him...concerned a bit...

We go camping annually the weekend after the 4th.  He is scheduled for chemo 6/23.  I'm concerned about if he'll feel well enough to camp (for my daughters sake)...it will be 2 weeks after infusion. I know only time will tell how it will affect him, but I'm anxious to hear from anyone else who has had the same cocktail...

 

 

 

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