Seeking advice from experience

[Close Friend]

I have a friend, 60 yrs old, excellent performance status, nonsmoker, no other chronic illness, with few weeks of dry cough, led to new diagnosis of Stage 4 Lung AdenoCA, metastatic to brain, negative molecular markers, low PD L-1; received true beam XRT to brain lesions; has been offered treatment with Pembrolizumab and chemo with carboplatin+paclitaxel. She is worried that chemo will only make her feel way worse than she does now, and not add meaningful time to her life - so much so, that she is considering foregoing chemo. Can anyone in a similar situation, please share their experience. And if anyone knows of any clinical trials that explore adding surgical/ radiation therapy options to chemo in hopes of improving survival.

[LouT]

I’m sorry to hear about your friend’s situation.  To accept treatment or not is a tough decision that only the patient can make for themselves.  Perhaps your friend can speak with her doctor and discuss potential outcomes to the treatment considering her present status, overall condition, tolerance to the treatment, and prognosis.  My treatment was surgical so I can’t share any experience regarding chemotherapy, but there are others here who may share their stories with you.  Also take a look at “Treatment Options for Lung Cancer”, some of the information may help your friend better understand her treatment options.

Lou

[RJN]

Close Friend - good on you for checking in for your friend. As a fellow stage 4 adonema NSCLC, I understand the concern. I was lucky enough to have high PDL, so didn’t have to worry about chemo, but only had pembro monotherapy. But the majority of people in my various immuno group had the combo. My understanding from them are that it really isn’t nearly as rough as one would expect. And many, many of them are now NED and living years as cancer free. Modern chemo have far fewer and far milder side effects than we have been conditioned to see on TV etc. (The rough ones are still being used e.g. for lymphoma, but rarely for first-line LC). With stage 4, systemic treatment is very important, as it surgical/radio cannot weed out stray cancer cells the same way. I would encourage her to join some of the immunotherapy groups on Facebook and hear people’s experiences before she makes a decision. 

[tgif i guess]

1 hour ago, RJN said:

My understanding from them are that it really isn’t nearly as rough as one would expect.

carboplatin, alimta and keytruda for about 6 months

alimta and keytruda since then - about a year

i have been amazed at how effective it has been - and shocked at how well i have tolerated the treatments

it might be the same for your friend - i tell people, you can always quit chemo

[edivebuddy]

Absolutely everyone responds to therapies differently.  I've seen so many people that have no side effects whatsoever from chemotherapy.  I had plenty of them. It definitely was no walk in the park but I do it every year if that's what it took.

I was end stage papillary Adenocarcinoma of the lung before I even started treatments.  I had a 0% 2 year prognosis with an expectancy of 3 to 6 months.   I had to be checked into the ICU for an emergency Craniotomy  plus emergency chemotherapy.    

That chemotherapy was Carboplatin and taxol (paclitaxel)  my lung cancer did respond to that signal emergency infusion.  It stopped or slowed down the crazy growth on my neck.  It shrank the tumor in my lung and fully resolved the tumor on my liver. Liver was tiny at 8 mm and the lung went from 3 x 3 cm in July to 2.9 x 2.1 cm  only 9 days after that treatment.  

My next treatment was changed to Keytruda  Carboplatin and Alimta because of my PD-L1 status.  Mine was extremely high.    But a full response may be seen in low PD-L1 status patients. I continued to have a remarkable response.  And like my radiation oncologist points out I can not differentiate which drug worked. I firmly attribute that to keytruda (pembrolizumab)

 

 

 

[TJM]

I was diagnosed in 2020. No mutations that were treatable at the time. Had my Right Lower Lobe (RLL) removed, 5 rounds of a similar Chemo and 55 rounds of radiation. It was a rough 6 months but here I am over 4 years later. Life is different now but it was worth every minute of discomfort from treatment. I have tried my best to pack life experiences into those 4 years and that has been a blessing.

It's possible I may have or go into remission. I will fight that just as well. The science behind treatment has already advanced a lot in just those 4 years. And the medications fir side effects have improved (as has dosage control l IMO).

Bottom line is treatment can always be ceased if it is to difficult. Not getting treatment becomes permanent sooner than many know. And the spread of the untreated cancer can cause horrible effects on the body. The choice isn't between feeling better or worse. It is between living and dying. The dying part isn't always peaceful. FWIW I am a similar age (63).

Best wishes whatever decision is made.

Tom

[Livin Life]

Just sending support...  I'm being monitored for adeno though not diagnosed at this time.  My two sisters had lung cancer though small cell so very different situation.  I'm assuming my dad's was adeno tho that was 1975 so not germane to now....  I agree with your friend having a frank discussion with docs, asking them to be very honest (b/c not all are) about pros and cons as your friend expresses their concerns about treatment.  Maybe that leads to treatment and maybe that confirms your friend's concerns.  I'm a firm believer in people having as much info as possible so they can make decisions they are most comfortable with regarding treatment, type(s) of treatment or no treatment....

[Close Friend]

Thank you so much! This is very helpful indeed!