Charles

Barb,
be ever vigilant to all inflammation problems at first, coughing and fatigue for me worsens then subsides, worsens then subsides etc. but always seem to be there and get worse for me during stress, and activities especially on bad lung days or days I believe to be my side effect hit days after infusions. Also, if someone is around you who will do it and you can trust, give them instructions on what to do if a side effect hits that completely debilitates you (GOD FORBID!) 911, driving you to the E.R. or assistance with things like dizziness, light headeness and preparing meals with plenty of vegetables and fruits, but very much get well aquainted with all the known side effects, inflammation that debilitates you is not minor, if you are in pain for more than a couple days go get checked out . If you have a computer or phone filing system, start a file and entitle it something like "Durvalumab stuff" then  google Durvalumab side effects and download information, pdf's and all the information you may find that is helpful to make you feel better about the knowledge you gain about this drug and yourself. Get to know this drug and it's possible side effects because it will get to know you if it works, And most of all  PRAY, then take a deep breath and bask in the well being of knowing and believing that you are doing all you can do to help the drug find it's target and do it's job. This is basically how I do it and it has worked for me, a prepared and well armed soldier wins more battles, Hope I haven't insulted your intelligence or anything but these are the things I wish my Onc. and Primary care provider would have told me after my first infusion. Congrats on #1 and keep your chin up fellow Durvy........Charles

As a coda to this forthright and meaningful discussion of Durvalumab treatment and side effects, I am reminded of Dr. Phillip Berman's characterization of how life changes from normal person to a cancer person upon diagnosis: "When diagnosed with lung cancer, one goes from a participant in life to a frightened observer with no control and little hope."
Any form of lung cancer and all treatment methods are indeed frightening. Looking back on my 3+ years of active treatment or my "un lived life", I now realize I was severely depressed. The medical system of that time did not test or assess for depression. I'm not sure today's system has improved. Bring the topic up at your next medical consultation. If normal life is too short for doom and gloom, what is life with lung cancer?
Stay the course.
Tom

Charles......I like what you said, I like how you said it. You don't mince words and you're keeping it real. I am so totally in favor of expressing every bit of what's going on with our lives, with our bodies with brute honesty. Kate7617's honesty and absolute despondency over her challenges and disappointments are to be commended too. Thank you Kate for expressing what challenges our entire being; physically, emotionally, and spiritually. For it's with our honesty and digging deep that we find out who we are and what will resonate with us and work for us and take us to our goal, whatever that may be. It's a very personal process for sure. 
Two extremely personal stories from Charles and Kate7617.......thanks to the both of you so much for sharing. I have no doubt you have reached others and provoked insight.....I know you have for me.
Take Care all, DFK

Kate7617.
One thing about this Durvalumab is it aint for everybody. We all have our realities on it and this can be attested to throughout the pages of this forum. Being on Durvalumab has put me in closer touch with 3 realities: Reality, Stark Reality, and Surreality. The first two ,"Reality" and "Stark Reality" are also evident on this forum and are used by some as the "drive" or "fight" to endure this side effect filled, perilous journey of Durvalumab because it does REEK, and that is putting it nicely. "Surreality" is what I use for my " Drive" to fight harder in this battle and I will illustrate here (with pictures) what I mean. In my past posts I have been known to use phrases like the beast, slay the beast, slay the dragon, and others with a seemingly militaristic fanaticism that could appear to be based in fantasy, insanity, or general kookism but I'd like to tell you this story because it did help me. Right about the time of infusion #5, I was feeling the exact same as you UGH! At around #7 or #8 I got a CT scan that showed remarkable shrinkage and progress so I posted the pictures on page 15 The top picture is of my tumor before treatment and the bottom one is of the tumor at the time of the cat. the before picture put me in closer touch with reality and stark reality but the bottom picture put me all up in surreality no matter how good the news really was. I taught myself how to read a ct/pet scan early because I seemingly like to see and measure PROGRESS and photograph for documentation the differences. Here's where the beast and dragon come in. I snapshot 3 angles - frontal, side, and from bottom up on my scans to determine the actual mass of my tumor  and I use these three angles at their largest measurements to do this. The one on page 15 is the frontal at it's largest with measurements superimposed.  The progress is evident by comparison but in the bottom image there is a ghastly image present. My tumor was a demonic face looking back at me from a side view, complete with pointed nose, eye, elongated head and a sinister toothy grin. Normally I wouldn't have been so shocked by this but the other two views I snap shotted , at their largest,  also revealed non human images complete with said features all evil but different, and all aware of my presence and the fact I know they still exist. One's features "looks" surprised or startled, another looks jovial and aloof, and the one on page 15, well. go see for yourself.  This propelled me into a "world" of Surreality which I have never known, knowing that my tumor could also be an evil 3 headed beast whose symbiotic nature and intent it is to end me. This is when I escalated the hatred for the "beast' mind body and soul and vowed that I would crawl up to death's door fighting and killing it .but by no means would walk through that door without the best fight I could possibly give. I am proud to say that the most recent PET/CT scans reveal what the Durvalumab and GOD is doing to these "beasts". The shapes somewhat remain but smaller but are mostly inflammation and scar tissue. The faces and the "smirks' gone. The beast is dying a horrible death and I am still being inundated with side effects at , which next infusion will be #18 and I will do the Durvalumab shuffle all the way into that infusion room and throw my stubborn veined hand up for a nurse to dig around in my flesh until blood registers and begin my next "Dragonslayer" if you will. If I get the opportunity to pinpoint "if it stops working" well that's another beast. I do hope I don't get executed for heresy by some secret or non secret society because of this post, or get comitted to my nearest state asylum. One of my favorite songs is by an 80's group named Triumph and they are from Canada, just their name invokes victory and so does their song "Fight the good fight" and here are some of the words      Fight the good fight every moment, every minute everyday,  Fight the good fight every moment, make it worth the price you pay. Every moment of your lifetime, every minute everyday,  fight the good fight every moment, in your lovely way. AND DEATH TO THE BEAST!

Kate7617.
One thing about this Durvalumab is it aint for everybody. We all have our realities on it and this can be attested to throughout the pages of this forum. Being on Durvalumab has put me in closer touch with 3 realities: Reality, Stark Reality, and Surreality. The first two ,"Reality" and "Stark Reality" are also evident on this forum and are used by some as the "drive" or "fight" to endure this side effect filled, perilous journey of Durvalumab because it does REEK, and that is putting it nicely. "Surreality" is what I use for my " Drive" to fight harder in this battle and I will illustrate here (with pictures) what I mean. In my past posts I have been known to use phrases like the beast, slay the beast, slay the dragon, and others with a seemingly militaristic fanaticism that could appear to be based in fantasy, insanity, or general kookism but I'd like to tell you this story because it did help me. Right about the time of infusion #5, I was feeling the exact same as you UGH! At around #7 or #8 I got a CT scan that showed remarkable shrinkage and progress so I posted the pictures on page 15 The top picture is of my tumor before treatment and the bottom one is of the tumor at the time of the cat. the before picture put me in closer touch with reality and stark reality but the bottom picture put me all up in surreality no matter how good the news really was. I taught myself how to read a ct/pet scan early because I seemingly like to see and measure PROGRESS and photograph for documentation the differences. Here's where the beast and dragon come in. I snapshot 3 angles - frontal, side, and from bottom up on my scans to determine the actual mass of my tumor  and I use these three angles at their largest measurements to do this. The one on page 15 is the frontal at it's largest with measurements superimposed.  The progress is evident by comparison but in the bottom image there is a ghastly image present. My tumor was a demonic face looking back at me from a side view, complete with pointed nose, eye, elongated head and a sinister toothy grin. Normally I wouldn't have been so shocked by this but the other two views I snap shotted , at their largest,  also revealed non human images complete with said features all evil but different, and all aware of my presence and the fact I know they still exist. One's features "looks" surprised or startled, another looks jovial and aloof, and the one on page 15, well. go see for yourself.  This propelled me into a "world" of Surreality which I have never known, knowing that my tumor could also be an evil 3 headed beast whose symbiotic nature and intent it is to end me. This is when I escalated the hatred for the "beast' mind body and soul and vowed that I would crawl up to death's door fighting and killing it .but by no means would walk through that door without the best fight I could possibly give. I am proud to say that the most recent PET/CT scans reveal what the Durvalumab and GOD is doing to these "beasts". The shapes somewhat remain but smaller but are mostly inflammation and scar tissue. The faces and the "smirks' gone. The beast is dying a horrible death and I am still being inundated with side effects at , which next infusion will be #18 and I will do the Durvalumab shuffle all the way into that infusion room and throw my stubborn veined hand up for a nurse to dig around in my flesh until blood registers and begin my next "Dragonslayer" if you will. If I get the opportunity to pinpoint "if it stops working" well that's another beast. I do hope I don't get executed for heresy by some secret or non secret society because of this post, or get comitted to my nearest state asylum. One of my favorite songs is by an 80's group named Triumph and they are from Canada, just their name invokes victory and so does their song "Fight the good fight" and here are some of the words      Fight the good fight every moment, every minute everyday,  Fight the good fight every moment, make it worth the price you pay. Every moment of your lifetime, every minute everyday,  fight the good fight every moment, in your lovely way. AND DEATH TO THE BEAST!

Kate7617.
One thing about this Durvalumab is it aint for everybody. We all have our realities on it and this can be attested to throughout the pages of this forum. Being on Durvalumab has put me in closer touch with 3 realities: Reality, Stark Reality, and Surreality. The first two ,"Reality" and "Stark Reality" are also evident on this forum and are used by some as the "drive" or "fight" to endure this side effect filled, perilous journey of Durvalumab because it does REEK, and that is putting it nicely. "Surreality" is what I use for my " Drive" to fight harder in this battle and I will illustrate here (with pictures) what I mean. In my past posts I have been known to use phrases like the beast, slay the beast, slay the dragon, and others with a seemingly militaristic fanaticism that could appear to be based in fantasy, insanity, or general kookism but I'd like to tell you this story because it did help me. Right about the time of infusion #5, I was feeling the exact same as you UGH! At around #7 or #8 I got a CT scan that showed remarkable shrinkage and progress so I posted the pictures on page 15 The top picture is of my tumor before treatment and the bottom one is of the tumor at the time of the cat. the before picture put me in closer touch with reality and stark reality but the bottom picture put me all up in surreality no matter how good the news really was. I taught myself how to read a ct/pet scan early because I seemingly like to see and measure PROGRESS and photograph for documentation the differences. Here's where the beast and dragon come in. I snapshot 3 angles - frontal, side, and from bottom up on my scans to determine the actual mass of my tumor  and I use these three angles at their largest measurements to do this. The one on page 15 is the frontal at it's largest with measurements superimposed.  The progress is evident by comparison but in the bottom image there is a ghastly image present. My tumor was a demonic face looking back at me from a side view, complete with pointed nose, eye, elongated head and a sinister toothy grin. Normally I wouldn't have been so shocked by this but the other two views I snap shotted , at their largest,  also revealed non human images complete with said features all evil but different, and all aware of my presence and the fact I know they still exist. One's features "looks" surprised or startled, another looks jovial and aloof, and the one on page 15, well. go see for yourself.  This propelled me into a "world" of Surreality which I have never known, knowing that my tumor could also be an evil 3 headed beast whose symbiotic nature and intent it is to end me. This is when I escalated the hatred for the "beast' mind body and soul and vowed that I would crawl up to death's door fighting and killing it .but by no means would walk through that door without the best fight I could possibly give. I am proud to say that the most recent PET/CT scans reveal what the Durvalumab and GOD is doing to these "beasts". The shapes somewhat remain but smaller but are mostly inflammation and scar tissue. The faces and the "smirks' gone. The beast is dying a horrible death and I am still being inundated with side effects at , which next infusion will be #18 and I will do the Durvalumab shuffle all the way into that infusion room and throw my stubborn veined hand up for a nurse to dig around in my flesh until blood registers and begin my next "Dragonslayer" if you will. If I get the opportunity to pinpoint "if it stops working" well that's another beast. I do hope I don't get executed for heresy by some secret or non secret society because of this post, or get comitted to my nearest state asylum. One of my favorite songs is by an 80's group named Triumph and they are from Canada, just their name invokes victory and so does their song "Fight the good fight" and here are some of the words      Fight the good fight every moment, every minute everyday,  Fight the good fight every moment, make it worth the price you pay. Every moment of your lifetime, every minute everyday,  fight the good fight every moment, in your lovely way. AND DEATH TO THE BEAST!

Kate7617.
One thing about this Durvalumab is it aint for everybody. We all have our realities on it and this can be attested to throughout the pages of this forum. Being on Durvalumab has put me in closer touch with 3 realities: Reality, Stark Reality, and Surreality. The first two ,"Reality" and "Stark Reality" are also evident on this forum and are used by some as the "drive" or "fight" to endure this side effect filled, perilous journey of Durvalumab because it does REEK, and that is putting it nicely. "Surreality" is what I use for my " Drive" to fight harder in this battle and I will illustrate here (with pictures) what I mean. In my past posts I have been known to use phrases like the beast, slay the beast, slay the dragon, and others with a seemingly militaristic fanaticism that could appear to be based in fantasy, insanity, or general kookism but I'd like to tell you this story because it did help me. Right about the time of infusion #5, I was feeling the exact same as you UGH! At around #7 or #8 I got a CT scan that showed remarkable shrinkage and progress so I posted the pictures on page 15 The top picture is of my tumor before treatment and the bottom one is of the tumor at the time of the cat. the before picture put me in closer touch with reality and stark reality but the bottom picture put me all up in surreality no matter how good the news really was. I taught myself how to read a ct/pet scan early because I seemingly like to see and measure PROGRESS and photograph for documentation the differences. Here's where the beast and dragon come in. I snapshot 3 angles - frontal, side, and from bottom up on my scans to determine the actual mass of my tumor  and I use these three angles at their largest measurements to do this. The one on page 15 is the frontal at it's largest with measurements superimposed.  The progress is evident by comparison but in the bottom image there is a ghastly image present. My tumor was a demonic face looking back at me from a side view, complete with pointed nose, eye, elongated head and a sinister toothy grin. Normally I wouldn't have been so shocked by this but the other two views I snap shotted , at their largest,  also revealed non human images complete with said features all evil but different, and all aware of my presence and the fact I know they still exist. One's features "looks" surprised or startled, another looks jovial and aloof, and the one on page 15, well. go see for yourself.  This propelled me into a "world" of Surreality which I have never known, knowing that my tumor could also be an evil 3 headed beast whose symbiotic nature and intent it is to end me. This is when I escalated the hatred for the "beast' mind body and soul and vowed that I would crawl up to death's door fighting and killing it .but by no means would walk through that door without the best fight I could possibly give. I am proud to say that the most recent PET/CT scans reveal what the Durvalumab and GOD is doing to these "beasts". The shapes somewhat remain but smaller but are mostly inflammation and scar tissue. The faces and the "smirks' gone. The beast is dying a horrible death and I am still being inundated with side effects at , which next infusion will be #18 and I will do the Durvalumab shuffle all the way into that infusion room and throw my stubborn veined hand up for a nurse to dig around in my flesh until blood registers and begin my next "Dragonslayer" if you will. If I get the opportunity to pinpoint "if it stops working" well that's another beast. I do hope I don't get executed for heresy by some secret or non secret society because of this post, or get comitted to my nearest state asylum. One of my favorite songs is by an 80's group named Triumph and they are from Canada, just their name invokes victory and so does their song "Fight the good fight" and here are some of the words      Fight the good fight every moment, every minute everyday,  Fight the good fight every moment, make it worth the price you pay. Every moment of your lifetime, every minute everyday,  fight the good fight every moment, in your lovely way. AND DEATH TO THE BEAST!

Way to go Sillycat, and right here around Thanksgiving what a blessing.

Way to go Sillycat, and right here around Thanksgiving what a blessing.

Hey Roseann
That is very good news indeed!  Funny I named my tumor Bill- after the Kill Bill movies.  Death to the monster!  You are doing this!  Whoo hoo!
Michelle

Sillycat,
You did indeed word "that correctly". Your description screams good news and we love good news even if we are unsure as to cause.
Stay the course (and celebrate a bit!)
Tom

Good morning all,
I had infusion #7 yesterday all went well there, my stupid port was clogged again! They had to inject that clot buster stuff in it again! But before the nurse does that we do some  calisthenics: lit my hands over my head wave them around, stand up, turn my head side to side, sit down, lie down, arms over my head! Ugh!!! Nope Nada! In goes the buster then I have to wait an hour for it to work, then they can start the infusion. Good news my WBC is finally up to levels it should be.
PET scan results are great: CT scan from 7/26/19 tumor(George is his name) was 1.2cm now 9mm Yee Haw!!! (My SUVmax from my orig scan on 3/5/19 was 15.1 tumor then was 2.1cm with right hilar node lit up) Which brought my staging to 3a after unrectable surgery. My SUVmax is now 2.2 shows no uptake nowhere other than the 9mm in the original tumor spot.
So, I hope I worded that correctly. Moving forward, that adjusted my bad attutude, to an attitude of GRATITUDE! Is it the Durva working it? Or is the Radiation still at work? Heck I guess I really shouldn't care right, I just want the Durvalumab to stop making me feel like crap all the time! And my port to behave! I guess I want to be well and not tired and achy and whiney 😃
DFK that injection sounds promising, wish you the best outcome with that, you'll be Christmas caroling in no time right?
Barb, I guess you just gots to lots of walking and more walking, maybe some mall walking where it's warmer! 
I will keep fighting the fight, one day at a time
Roseann 😸

Good Saturday to all,
Just had to chime in to the banter......
Charles and SillyCat on your take of Durvalumab annoyances:
For me it's been one of those weeks. I try really really hard to put a positive spin on being grateful for "all that is before me" but sometimes, nothing I say to myself takes away the misery of my aches and pains and how detoured my life has become. I had to giggle SillyCat on you needing an attitude adjustment......nice way of putting how fatigued you are with all that you are going thru.....it's ain't no picnic no matter what rose colored glasses we put on. So thanks Charles and SillyCat for keeping it real....it made me laugh and that is always a very good thing.
Barb
Darn, can’t you catch a decent break....great that you’re back on the infusions but a sinus infection? Take care of yourself and wishing you a speedy recovery.
Take Care all, DFK

DFK,
Well, I sure wish you well with your ENT visit, and get to fixin your vocal cords Minnie can get to be a little irritating lol! (Sorry) my sometimes Minnie voice is still lingering from radiation I'm told hardly there at all anymore, thank goodness, big fan of cinnamon drops.
DarlaK,
Welcome to the Durva club, and hope you get to feeling better 😃
Barb,
Welcome back to the Durva infusion train! 
Charles,
Like you and Barb said,  yes I am grateful to be alive but I so, so, hate this drug and what it does to me! I need a serious attitude adjustment here 😣 takes 6-8 days to recover and feel somewhat normal after my infusion. fatigue is the worse along with back and shoulder pain.
I had my Pet/CT scan yesterday, my results are still not available online yet. Ugh! Scanxiety setting in, my infusion and oncology appt is Monday. Time to busy my mind with some Netflix and Yoga, meditation and snacks etc....
Have a great weekend!

Barb,
You're right about how durva makes one feel , makes me feel like crap in a bucket, seems like I'm either slowly floating toward the top or sinking rapidly to the bottom but it's like you said "I didn’t think I would see thanksgiving but here I am." and that about sums it up. Congrats on 14

Barb,
You're right about how durva makes one feel , makes me feel like crap in a bucket, seems like I'm either slowly floating toward the top or sinking rapidly to the bottom but it's like you said "I didn’t think I would see thanksgiving but here I am." and that about sums it up. Congrats on 14

Barb,
You're right about how durva makes one feel , makes me feel like crap in a bucket, seems like I'm either slowly floating toward the top or sinking rapidly to the bottom but it's like you said "I didn’t think I would see thanksgiving but here I am." and that about sums it up. Congrats on 14

Hi fellow Durvas. I’m back on track with #14 yesterday after my little break. Forgot how crappy this stuff made me feel. Still have the aches and pains like pleuritis but not as bad. Back to the pulmonologist on Monday. Oncologist said keep going the way it is.  Me and the PA both think some of this is radiation damage to muscles and nerves-now have a numb spot under my arm that was in the line of fire. Only 12 more to go so I’m now descending the mountain. Hey a year ago come 12/7 I didn’t think I would see thanksgiving but here I am. 

Michelle,
Thank you for your kind thoughts and motivational words......we all can use a little cuddling. My scheduled surgery for vocal chord “plasty” should be a simple same day procedure. My doc said I'll be singing Christmas Carols for my community performances this Holiday season. Now that’s a goal I can live with. No Ave Maria for me but I can do a mean Winter Wonderland.
Take Care all, DFK
 

Hi Tomm,
I’ve been off of Durva for about 16 months. I still have MRI and PET scans every 3 months while taking a Tagrisso pill everyday.  There are side effects from the Tagrisso but, I am managing them. I’m pretty much able to do things I could do before being diagnosed in Jan 2018.  I pray that the Tagrisso will keep working for a long time.
Thanks for asking!
Take care,
🦅

Tomm-HA, HA, HA, HA, HA.....Love the "future's so bright, you gotta wear shades". We all need some belly laughs. Charles, go get dem dere sunglasses.
Barb, keep the faith, and I too hold good wishes that your next half will be uneventful and boring like Tomm has reported.
As a side note, got Lasix to use on an as needed basis for feet swelling......well, well, what do you know? The minute I got the script in hand....2 weeks now......no occurrence of swelling to lower extremities, no need for Lasix. Which is so bewildering as I had been experiencing weight gain and swelling for a couple of months before I requested the Lasix......just another anecdote. 
Lovely weekend to all.....take care everyone. DFK

Eagle 13, DKF, Sillycat  ... thanks for the feedback on having a beer
Eagle ... hope things are going well for you ... I'd like to read an update on your progress after getting off the Durva journey
DKF  .. I hope you get some positive results and a treatment plan from your many upcoming tests.
Sillycat .. I'm what I call a dry alcoholic and have not had a drink for 5 years, but I want one. My ONC said go for it and I follow doctors orders. I hope you get good results on your Pet
Charles ..It sounds like good news to me,  keep up the positive attitude and get some sunglasses, your future looks bright.
Barb.. I hope your time off has been healing for mind and body

DFK and Tomm,
already got me a couple pairs of dem dere sunglassees Arnie wore in Terminator 1 and it brings to mind two phrases, "I'll be bock" and "com wit me ip you want to lib". You guys are right, boring is good at this time but Tomm, boring you're not. You have busted off more legs in the big C's behind than a daddy long legs flying through a wood chipper,  you take enough natural supplements to become "one" with the universe, seem to have your own "Guru" and drink chocolate beer. Boring? not to me. Eccentric? maybe,  different? probably, outside-the-box? totally ,and you spare no expense in your endeavors, sounds like a good ally to have in a battle against a beast who attacks us on our own battlefields and has a cosmic degree in biology, but I must say that a plain ole, ICE COLD , SIX PACK of LONGNECKS would be ethereal about now, SLAY THE DRAGON!

DFK and Tomm,
already got me a couple pairs of dem dere sunglassees Arnie wore in Terminator 1 and it brings to mind two phrases, "I'll be bock" and "com wit me ip you want to lib". You guys are right, boring is good at this time but Tomm, boring you're not. You have busted off more legs in the big C's behind than a daddy long legs flying through a wood chipper,  you take enough natural supplements to become "one" with the universe, seem to have your own "Guru" and drink chocolate beer. Boring? not to me. Eccentric? maybe,  different? probably, outside-the-box? totally ,and you spare no expense in your endeavors, sounds like a good ally to have in a battle against a beast who attacks us on our own battlefields and has a cosmic degree in biology, but I must say that a plain ole, ICE COLD , SIX PACK of LONGNECKS would be ethereal about now, SLAY THE DRAGON!

Our prayers are with you next week as you head into surgery. You know in all those years in healthcare I saw a lot of posts on LinkedIn (most of them pointless) however one of them seems to stand out: the road to success is never a straight line. It’s fraught with unexpected twists, turns, ups, downs and just plain curve balls that can throw anyone off course.  The difference to achieving the goal is perseverance in the face of uncertainty & adversity.  That sounds pretty much what we’re all doing here every day.   Unlike our working lives, lung cancer doesn’t get to go on vacation, so we have to keep going forward.   
I hope you have a speedy recovery.  
Michelle