Charles

Good Wednesday to everyone
#22 Infusion is history. Blessedly uneventful, All labs remain within normal parameters. I have been fortunate
As I wind down with just 4 more infusions, I'd thought I give a run down of my personal experiences and side effects for the new initiates who may find themselves on Durvalumab and are learning from our forum. I've only included symptoms that were never present prior to my NSCLC and initiation of Durvalumab.
Itchies-Broke out in a rash to my back about 6 months in. The rash quickly resolved but my itchiness to my back remains. I've had good luck in treating it with Hydrocortisone 2.5% cream and an antihistamine as needed.
Pneumonitis- Diagnosed about 4 months in. From radiation therapy. Had to skip/postpone two doses of Durvalumab and was treated with Prednisone. Durvalumab was resumed, pneumonitis resolved and my pulmonary function tests improved and remain normal. I will be getting all 26 doses of Durvalumab.
Generalized Aches and Pains primarily to my back and thoracic area- Very disconcerting as my chest muscles ache, my ribs ache, my lower back aches. Was told this is due to post chemo/radiation and Durvalumab. Tylenol works but if the pain really hobbles me, Motrin is my go to pain relief. Got my medical marijuana card and purchased some THC/CBD tincture......didn't work for me. Maybe I didn't titrate dosing properly but I just got really stoned and loopy and my pain was still present. 
Joint Pain and Joint Muscle stiffness- I've really noticed an "awareness" of finger, toes, ankle and knee pain about 8 months in to my infusions. To be fair, I've had a few tumbles where I have hurt myself but the healing has been delayed and joint pain more pronounced. Again, Motrin seems to help. Had a fall from my bike couple weeks ago. I called it a soft landing since the bike just got out from under me in a mud bog. I've never bruised so extensively. Fortunately, the bruising was the worst of it and my injuries were minor. 
Headaches- I mention this because I rarely suffered from headaches prior to Durvalumab infusions. Currently, it's a rare day if I don't have a headache for an hour or two. I do not treat with medications since it abates by itself. 
Skin changes-  My skin bruises easier and little cuts and wounds take a lot longer to heal. My skin texture seems more fragile and my skin is definitely a lot drier. 
Weight Gain- Been a skinny whinny all my life so a 25lb weight gain is significant. My appetite has increased so I've had to pump up my physical activities which has been challenging since...
Faitgue- Has plagued me from chemo/radiation to today. Unrelenting presence, I do the best I can do by maintaining my physical activities and pacing my responsibilities.
Peripheral Edema to ankles, shins and fingers- After months of watching my ankles swell, I finally obtained some Lasix to use on an as needed basis. I had my wedding ring resized prior to my diagnosis so I am absolutely positive that my fingers were swelling and it was not weight gain. Fortunately, the swelling in my fingers subsided and I haven't had and ankle swelling since I obtained my Lasix Rx. 
I have been fortunate and have dodged the more serious side effects.
Update on voice hoarseness and ENT appointment- Official diagnosis; Left vocal cord paralysis. Most likely caused by lung tumor impinging on my laryngeal nerve. Though, and here's the rub, usually if tumor is on the right, right vocal cord nerve affected and vice versa, if tumor on the left, left vocal cord affected. Well, I had to be different as my tumor was in my right lower lobe but my left vocal cord is paralyzed. I did have subcarinal lymph node involvement and that may explain why my left vocal cord is affected BUT, to be on the safe side, my ENT MD and Oncologist are now in discussions about either a Pet Scan or Cat Scan to rule out any progression in my left lung. 
In the mean time, I am scheduled for surgery next week Thurs to mediate my vocal cord paralysis and hopefully, allow me to get my voice back. 
Abdominal Ultrasound to rule out ascites- Results from yesterday pending. I will see my PCP next Tuesday and all my tests and "to do's" should come together before my surgery. 
What a journey huh.....one day you're skipping along fine and then BAM, you're slammed and get warped into this medical world of tests, procedures, adverse events, side effects and advocating for your own well being, for your LIFE.  My son is a Navy SEAL and he told me I got this, that it was my fortitude and dealing with adversity that allowed him to be the man he is today. Nice words when your world is falling apart, and you sometimes feel overwhelmed, defeated and just plain tired.
So to all my peers on this journey, hang tough, advocate and carry on. We can do this. We are doing this.
Take Care all, DFK

got results from Friday's pet/ct scan and number 16 in the veins today (Tuesday the 5th) and was quite surprised by the scan results, moderate shrinkage continues, uptake down from 6.3 to 4.7, plueral effusion and pericardial effusions have resolved, no hypermetabolic lymph nodes were identified anywhere, and no new pulmonary nodules identified, and no new or enlarging FDG-avid adenopathy throughout exam so improvement continues, and so does the Durva, CBD oil, and Sodium Bicarb breathing treatments and protocol mixtures. As far as side effects, they remain debilitating. Massive inflammation in lungs and back where they fired radiation but no pain or noticeable damage but no doubt quite a bit of scarring. More coughing, fatigue, and exascerbations but to me this is secondary to the real deal, the Cancer is still dying and I am not so onward we go toward number 17 and the complete destruction of the BEAST!   hooorah!

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!

Barb
I see your point and totally agree as I have had to take a break myself a time or two off this mess and don't regret it for one moment

Barb, 10-4 0n the break from durva, had to take a few of those myself
Sillycat, you are smart and funny and I am glad you are in good spirits
I've been laying low and pixellating and listening to everybody else, scheming on how to get one or more steps ahead of the beast  I have been on this site since page nine and have noticed  similarities in some of our Durva journeys other than the infusions themselves. Infusions 2 and 8 seem to be recurring as noticeable Durva event occurences. My next one will be 16 (should be 21) and  I am as grateful for  prednisone and levothyroxine as I am Imfinzi FOR SURE!  It seems from reading here that after #12  "things" begin to change or the stakes SEEM go up so to speak. I have noticed that my Onc's asst. gets all stuttery and appprehensive when I mention the numbers 12, and 15-24 but generally all after 12. I have "tested her waters" for deception and/or apprehensiveness to reveal the real deal and she has tested positive for both in an innocent type way, but she has become defensive of durva a time or two and I have had to remind her on a couple of occasions that it is OUR cancer, but it is my lungs, my thyroid, and my LIFE, being as nice as I could along the way. I rarely (after 12TH) get to see my actual onc anymore but he has been forthcoming and honest. Being on schedule doesn't seem to be too important to them until it's time for that money so I consider it in my best interest to let them know that if the durva stops working (to me, when shrinkage stops) at 15 or 16 then I might opt for a plan B before mets occurs if at all possible. I had to actually insist to get my pet/ct scan this friday (several weeks past 90 days on my last one) under the advice of the assistant "your insurance probably won't approve it", but they did, and in I'll go hoping and praying for the best, but goes to show that sometimes you have to advocate for yourself in the heat of some battles and this is a crucial time in my mind needing to know the size, location, and movement of the enemy, and if "our" strategy is still working or not. If the beast continues to shrink then Glory to God and you'll see me at the finish line, but if it doesn't and there are no mets after this scan, then Glory to God for allowing me to pinpoint WHEN would be the most opportune time to find a plan B and come off this crap and start recovering from something that I don't know if I'll ever recover from in the first place, before mets occurs. That is my goal at this point, continue till the last treatment if shrinkage continues then from there we'll go, no more shrinkage, no more Imfinzi, IF I GET THE CHANCE.....Hoping and praying for the best but being ever vigilant for the worse

#15 infusion yesterday, all blood work in normal range  & TSH 3.71.  No side effects, no weight gain, no fatigue, no other health issues no other medications except levothyroxine 150 mcg. 
 I take 12 natural supplement and 1/2 gram CBD (not from hemp). Doctor says I'm boring. I read that no alcohol was allowed with Durva  but this week the Doc says I can have a beer but don't drink enough to have a hangover. He said alcohol will not interfere with Durva,  I'm getting a chocolate beer this week. Anyone else told it's OK to have a beer? 
A big Thank You to those that post here to show us what can happen and how to deal with it. It would be nice if people that read this and are on Durva share their journey with others, it will help others.
enjoy the season
 
 

Sillycat,
I had the same pains around the same time you are and the pain did not go away until I was put on cortico's at 20 mg per day for several days, I believe 3 days and the pain was gone and I stopped taking the roids on my own before 4 days so I didn't have to taper down and still continued treatments. 5mg of cortico's wouldn't have been enough to stop the pain in my side (underarm) or 10 mg for that matter. Chest pains are potentially dangerous side effects to this drug and they should be taking you a little more seriously when you tell them these things other than saying "could be this" or "could be that" or "we don't know". It is THEIR job to find out if it is the Durva that is causing your pain by applying corticosteroids to see if the pain stops. Sounds like you are in a precarious situation with over the counter pain medications since Tylenol and Ibuprophen really helped a lot for me on pain and inflammation. I am surprised your onc didnt delay your treatments for at least a week until they knew more about your pains or at least prescribe a higher dosage of corticos. So sorry you are in pain, I have just recently jumped on the cbd oil wagon, I read it can help with pain too but it can be expensive....

Hey Charles that’s great!  

Death to the beast!  Onward.  Side effects suck. So sorry about that, keep fighting! 

Charles,
Face Durva to the enemy and kill!
Stay the course.
Tom

Charles-Love reading "no new" at the beginning of your sentences. Hard earned positive outcomes are music to my ears. Thank you for sharing your wonderful news. Forward and onward, I am following in your footsteps. Take care, DFK

got results from Friday's pet/ct scan and number 16 in the veins today (Tuesday the 5th) and was quite surprised by the scan results, moderate shrinkage continues, uptake down from 6.3 to 4.7, plueral effusion and pericardial effusions have resolved, no hypermetabolic lymph nodes were identified anywhere, and no new pulmonary nodules identified, and no new or enlarging FDG-avid adenopathy throughout exam so improvement continues, and so does the Durva, CBD oil, and Sodium Bicarb breathing treatments and protocol mixtures. As far as side effects, they remain debilitating. Massive inflammation in lungs and back where they fired radiation but no pain or noticeable damage but no doubt quite a bit of scarring. More coughing, fatigue, and exascerbations but to me this is secondary to the real deal, the Cancer is still dying and I am not so onward we go toward number 17 and the complete destruction of the BEAST!   hooorah!

got results from Friday's pet/ct scan and number 16 in the veins today (Tuesday the 5th) and was quite surprised by the scan results, moderate shrinkage continues, uptake down from 6.3 to 4.7, plueral effusion and pericardial effusions have resolved, no hypermetabolic lymph nodes were identified anywhere, and no new pulmonary nodules identified, and no new or enlarging FDG-avid adenopathy throughout exam so improvement continues, and so does the Durva, CBD oil, and Sodium Bicarb breathing treatments and protocol mixtures. As far as side effects, they remain debilitating. Massive inflammation in lungs and back where they fired radiation but no pain or noticeable damage but no doubt quite a bit of scarring. More coughing, fatigue, and exascerbations but to me this is secondary to the real deal, the Cancer is still dying and I am not so onward we go toward number 17 and the complete destruction of the BEAST!   hooorah!

got results from Friday's pet/ct scan and number 16 in the veins today (Tuesday the 5th) and was quite surprised by the scan results, moderate shrinkage continues, uptake down from 6.3 to 4.7, plueral effusion and pericardial effusions have resolved, no hypermetabolic lymph nodes were identified anywhere, and no new pulmonary nodules identified, and no new or enlarging FDG-avid adenopathy throughout exam so improvement continues, and so does the Durva, CBD oil, and Sodium Bicarb breathing treatments and protocol mixtures. As far as side effects, they remain debilitating. Massive inflammation in lungs and back where they fired radiation but no pain or noticeable damage but no doubt quite a bit of scarring. More coughing, fatigue, and exascerbations but to me this is secondary to the real deal, the Cancer is still dying and I am not so onward we go toward number 17 and the complete destruction of the BEAST!   hooorah!

got results from Friday's pet/ct scan and number 16 in the veins today (Tuesday the 5th) and was quite surprised by the scan results, moderate shrinkage continues, uptake down from 6.3 to 4.7, plueral effusion and pericardial effusions have resolved, no hypermetabolic lymph nodes were identified anywhere, and no new pulmonary nodules identified, and no new or enlarging FDG-avid adenopathy throughout exam so improvement continues, and so does the Durva, CBD oil, and Sodium Bicarb breathing treatments and protocol mixtures. As far as side effects, they remain debilitating. Massive inflammation in lungs and back where they fired radiation but no pain or noticeable damage but no doubt quite a bit of scarring. More coughing, fatigue, and exascerbations but to me this is secondary to the real deal, the Cancer is still dying and I am not so onward we go toward number 17 and the complete destruction of the BEAST!   hooorah!

Thanks @Curt  Ok, we're under a winter storm watch here in KC (REALLY??).  Don't like to go outside when it's under forty! Snow tomorrow. YUCK. 
Anyway, I tracked downed the research summary from one of Saturday's presenters, Dr Zhang, from the University of Iowa (not the Dr. Wall of Shame Dude).  Here is the outcome on the AE and IO published in October, 2019.  
https://www.cancertherapyadvisor.com/home/news/conference-coverage/iaslc-north-america/iaslc-north-america-2019/gut-microbiome-lung-cancer-risk-immunotherapy-treatment/
Here is the link about this from MD Anderson that was also discussed: 
https://www.cancertodaymag.org/Pages/cancer-talk/October-11-The-Week-in-Cancer-News.aspx
I was taking one of those OTC pre and probiotics and the first thing my Integrative Medicine Doctor at the University of Iowa did was tell me to discontinue, even though I take take targeted therapy. 
I tried the DIY keifer it was just too gross for me so I buy mine to make chia pudding.  Here's the recipe: 
1 Cup Keifer 
1/4 cup chia seeds
1 tsp of cinnamon
1 tsp of maple syrup 
You can add things like a table spoon of oats, barley, rye or blueberries 
Place in a jar, shake it up and viola two to three hours later you've got "pudding".  
Chow! 
 

First I’d like to say that this topic and everyone on it is inspiring.  850+ posts and still going.  You are all amazing!
 
I read this article in the Times today.  Seems relevant to @Rower Michelle post.https://www.nytimes.com/2019/10/24/well/eat/fiber-and-yogurt-tied-to-lower-lung-cancer-risk.html
I dug a little deeper and found this article as well.  https://www.medpagetoday.com/hematologyoncology/lungcancer/82933

I was briefly in to making my own Kefir.  I may get back into it.  It’s an amazing source of natural probiotics.  

Hello to The Durva Club-
I wanted to pass this information along to you-
On Saturday I was invited to speak to a group of medical professionals as part of a Continuing Education/Lung Cancer Awareness event.  I crashed the CEU program in search of new information. As a side note it’s amazing what the keynote speaker (from one of the big famous comprehensive cancer centers) had to say in the opening remarks.  “Lung Cancer is bad, really bad “ Obviously he didn’t know there was a patient lurking around in the audience.  He wasn’t a positive see the bright side of life type of Doctor. Shame on him!!
Anyway, a Durva study is about to be published about the efficacy of this IO and a direct correlation was discovered between the health and diversity of the gut microbiome and adverse events (any of the itis’s).   It was reported that many well advertised over the counter pre and probiotics had an adverse impact on the gut microbiome.  Too much of “good thing” is bad for you. 
 
those patients with a healthy diverse gut microbiome (measured in stool samples) had a very low incidence of adverse events, greater efficacy and ability to tolerate the full course of Durva.  

In my opening remarks I did call out this doctor and told him there are many brave survivors who have learned to live with lung cancer beating the odds every day. 
 
You guys inspire me! 
Michelle
 

Hi Ron. Lol, I’m sorry to say I remember that show. Sorry to read about your side effects. Hopefully they are temporary and/or controllable. It certainly is crazy how some people have no side effects or very little and others get more. Hang in there-we are all fighters and we are all going to win!!

Hi Ron-
Yep, all of those side effects!  The only thing I can say is that it’s a worthwhile trade off  For some reason Alectinib is dosed at the highest “tolerable” in a one size fits all category.  Approximately 3/4 of patients get stepped down to a lower dose which decreases most adverse effects.  
Hang in there through the “fine tuning process” with all those upcoming labs! 
Michelle

Barb   ..sorry to hear you need to skip an infusion, I hope the time off gets you back on track.
Sillycat  .. you may find this interesting  https://www.ncbi.nlm.nih.gov/pmc/articles/PMC5767492/
 
I got #14 today, blood work all good ,most  fatigue is gone. No side effects. No other medications except 1/2 gram cbd oil in a cap most nights
CT says I'm still NED!!
enjoy the season
 

Well the pulmonologist visit went better than expected. Took another X-ray (starting to worry about all this radiation) and showed nothing,no fluid, no Pneumonitis so the consensus is pleuritis for sure. No prednisone-both the onc and the pulmonologist agreed that at this stage it’s better to let it run its course and just take over the counter anti inflammatory drugs and patches. Said the prednisone will stop the Imfinzi in it’s tracks. I had a bunch of PFTs and said the results are the best they have ever been. Said if I wasn’t doing so well he would consider steroids but he ain’t screwing around with it.  Got to go back 4 days after the next infusion to see if it made my symptoms worse. Hopefully with skipping a dose it will all calm down. Did learn that there are no nerves in your lungs, they are all in the Pleura. One good thing, might have to cancel the gross GI tests at the end of November. No anaesthesia with pleurisy-oh darn I was looking forward to cameras in all my orifices 😬

Barb
I see your point and totally agree as I have had to take a break myself a time or two off this mess and don't regret it for one moment

Barb
I see your point and totally agree as I have had to take a break myself a time or two off this mess and don't regret it for one moment