Robert Macaulay

Yes, every treatment I saw the PA or the oncologist.  I told them both about the continued issue with shortness of breath at each meeting.   They wanted to give the treatment time to work and were waiting for the time when the next CT was allowed by insurance.  The CT is what they go by to see how things are working or not.   A chest xray will show the Pleural effusion.   I got a CT after the chest xray in the ER.

I found that coffee was a problem for me until I started the Tagrisso.  It gave me dry mouth and irritated my throat.  I believe my issue was the radiation treatement that focused on my lymph nodes next to my trachea.  I was a major robust coffee drinker before the chemo and radiation.   It seems like I am finally healing from the radiation and can drink my favorite coffees again.
I had 7 treatments of Durvalumab(Imfinzy) before I had to stop.  It is no fun to have to do the infusion every two weeks and the blood work that goes with it.  For me, I noticed shortness of breath getting worse as the treatment progressed.  Stairs were particularly a problem.  It got so bad I had to start using the elevator to go up 1 floor.  Finally during my 7th treatment visit I asked what I could do for relief. Inhaler, oxygen concentrator etc....   that is when I was told the onc would have to defer to the pulmonologists if I wanted those things.  I went to the pulmonologist, he told me I had ~gallon of fluid and sent me to the ER for a Thoracentisis.  That started to road to Tagrisso.

Kleo-
drink a lot of water to counter the side effects.  I found that drinking plenty of water every day made a big difference in side effects.  It worked for the Platinum based chemo and the Durvalumab.  In my cased the side effects of the Durvalumab were a cough, fatigue and the unfortunate build up of fluid. (Pleural effusion). Hopefully, you won’t experience the Pleural Effusion.

I'm drinking water! Ok and coffee too but that is just flavored water in my book. LOL I've only had the one infusion so I guess there hasn't been time enough yet for side effects to show up. Hopefully none will! 🤞
 

Robert-  
My original diagnosis was Metastatic Adenocarcinoma lung primary and I was Stage 3b at the time.   I was told that the staging is based on where all the cancer is found.  I had a spot on my lung detected from a CT at a physical.  When a biopsy was scheduled via navigational bronchoscopy one of my lymph nodes on the opposite side was found to have issues and was biopsied.  Tumor is stage 1, stage 2 is detection nearby but still contained on the same side in the same organ.  Stage 3 was outside that organ but within close proximity like a lymph node.  3b since the lymph node was on the opposite side.   I became stage 4 when the cancer had spread to the fluid in the pleural effusion.  At least that is how I remember the staging being explained to me.   I was also told that staging is the way the physician determines the approach for treatment.  From what I have read my initial treatment was textbook for my diagnosis.  Chemo and radiation.  Once complete it was typical to go to immunoyherapy for “maintenance” or prevention treatment.  Unforunately, the immunotherapy did not work as expected for me.  You are correct,  not every drug works for every individual.  That is why it is critical to seek as much expert advise as you can get.
Looking back,  knowing what I know now, I would demand biomarker testing before any initial treatment.  Of course hind sight is always 20/20.   Who knows what would have happened since Tagrisso wasn’t approved by the FDA until I had already had a couple of months of treatment.

It is like any other drug works for some and not for others , Doctor ever asked if you were allergic to Penicillin .

Eagle...I'm glad they got you sorted out! 
I asked my onc if they did any genetic testing on my samples. She said no...that's only done if it's metatastic. wha? But....it spread to my lymphnode so isn't that still metatastic? Locally metatastic maybe? I dunno.
I think right now they give the durvamulab regardless of PDL1 levels. 
Anyway I'm happy to hear the tagrisso is working so well for you!
 

Welcome aboard yes you are correct the side effects that can occur must be closely monitored and my oncologist has assigned me a local doctor at the hospital for visit every two weeks prior to my infusion and blood work. I have to agree on the Fatique as soon as I feel it coming on I go and lay down no longer than hour and no less than twenty minutes and that works real well for me. I never try and fight it waste time other than that I feel good and the test will come with the CT scan on the 29th of this month. Que sera  sera.
 
Bob

Welcome aboard yes you are correct the side effects that can occur must be closely monitored and my oncologist has assigned me a local doctor at the hospital for visit every two weeks prior to my infusion and blood work. I have to agree on the Fatique as soon as I feel it coming on I go and lay down no longer than hour and no less than twenty minutes and that works real well for me. I never try and fight it waste time other than that I feel good and the test will come with the CT scan on the 29th of this month. Que sera  sera.
 
Bob

I didn't lose my hair- but I didn't get the taxol! I'll be glad when your hubby gets the chemo over and done with too and y'all can join the Pacman party!.😀 

This stuff is nothing to play with... Have been on it quite a while now, had it today and am VERY tired,  exhausted,  one might say... It's great after Chemo ( with the Platinum Drugs) and Radiation , but the side effects will need to be monitored... I'm glad to have found this site,  because I have NSCLC,  Pancreas and Bladder Cancer,  and I was basically at my Wit's End... Truly...

I can't wait to join y'all in here once hubby starts on Durvalumab aka Pacman!  Once he gets to feeling better, he might join the forum anyway.  Right now, he is just resting and healing, bracing for the full chemo sessions.  Hope y'all have a blessed day. ❤️ 

This is very intresting recent article on this drug.
https://www.astrazeneca.com/media-centre/press-releases/2018/imfinzi-receives-positive-eu-chmp-opinion-for-locally-advanced-unresectable-non-small-cell-lung-cancer-27072018.html

This is very intresting recent article on this drug.
https://www.astrazeneca.com/media-centre/press-releases/2018/imfinzi-receives-positive-eu-chmp-opinion-for-locally-advanced-unresectable-non-small-cell-lung-cancer-27072018.html

This is very intresting recent article on this drug.
https://www.astrazeneca.com/media-centre/press-releases/2018/imfinzi-receives-positive-eu-chmp-opinion-for-locally-advanced-unresectable-non-small-cell-lung-cancer-27072018.html

Same routine but the doc thinks we should go monthly with the checkup but still bloodwork every two weeks.

No nothing much really yet. I was a bum yesterday. I just couch potatoed all day....but that's probably not the durva...that's more likely just me being lazy!😁   Today I've been out walking in the hood and went out for pizza with my son. Doing ok so far!  
Hoping it stays that way!
Doc has me coming back just for a checkup & bloodwork Wednesday.

That is good news funny I go for my fourth on October-10 and not in the least nervous. It takes them longer to prepare the drug as they have to weigh you prior to mixing the concoction not many nurses are sure yet of the process.
Bob

I have officially been infused. LOL I was pretty nervous. I ate a bag of cheesy poofs during the infusion....nervous snacking I guess. I got the orange cheesy powder all over everything. On the blanket and the chair....the nurse. It was even in my hair.🤣  Picture Pigpen from Charlie Brown..only orange. LOL
Infusion was an hour, prep was an hour...so not too bad. Kinda nice to only get ONE bag-o-drugs after all the bags of stuff they had to give with chemo before!
They didn't weigh me prior though. But I'd been weighed the week before. Recommended dosage of this stuff is 10 mg per kg.... I got 475 mg so that sounds about right I guess!
So far so good...🤞
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Nope. I think it COULD be...but seems like the nurses that aren't working in the infusion center aren't comfortable accessing them. They will use it for my pre-infusion blood tests though.

Haahaa!!...if I didn't have a port- I totally think that would happen. 😜

Soooo...Bob, not only are we on the same treatment schedule, we are actually getting our infusions on the same days now!?🤣
 

That is good news funny I go for my fourth on October-10 and not in the least nervous. It takes them longer to prepare the drug as they have to weigh you prior to mixing the concoction not many nurses are sure yet of the process.
Bob

That is good news funny I go for my fourth on October-10 and not in the least nervous. It takes them longer to prepare the drug as they have to weigh you prior to mixing the concoction not many nurses are sure yet of the process.
Bob

Got my start date finally! This Wed October 10. Eeep! Excited but nervous. LOL