Durvalumab

[Barb1260]

Well as I expect every November, sinus infection on top of all else. At least it’s not strep. 

[DFK]

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

[RonH]

On 11/13/2019 at 6:52 AM, DFK said:

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.

DFK,

I meant to send this earlier....please tell your son that we all say thank you for his service to this country as a Navy SEAL. 

Ron

[DFK]

Sure thing 🇺🇸

[DarlaK]

Hi DFK, 

Yes please keep updating me on this part of your journey - I did get a CT of the throat and it had showed a slightly displaced arytenoid that my ENT surgically tried to put back into place two weeks prior to the start of my 1st chemo - not sure if that even helped but I do talk a bit better.  I also have Minnie Mouse voice but when I talk low and quite it seems to help with the pain. I think my ENT DR and mostly the Oncologist are just trying to keep me focused on getting through the 3 more chemo infusions and don't really understand the whole aspiration of food/liquid to your lungs.  I do experience daily aspirations with water and sometimes food and is quite painful and unnerving.  I also during the day if I use my voice a lot that I get a swallowing a marble feeling.  Please let me know what you can when you can.  Thanks! 

Good luck to you with the Tuesday ENT pre-op appt.

Darla

[Barb1260]

Follow up with the pulmonologist today. Said the pleuritis will probably come and go until I’m off the Imfinzi. Double up on the Aleve and keep moving, breath heavy and cough a lot to keep from getting pneumonia. No sitting around being a couch potato this winter.  Told me I was boring, I said better boring than dead. 

[Tomm]

Bard ..  Boring is Good!!

[DFK]

Good Tuesday Everyone

Just wondering andtying up loose ends

Sillycat-Been praying for good results on your scan results and MD appt.I know it was on Monday.

Barb-I guess you got some Marching orders to keep pleuritis at bay or minimalized at best. Hang tight, stay inspired and know we are all on the same train traveling to the same goal.....Woot, woot!

Darla- I have decided to do the injection as my ENT surgeon felt this would best address my paralysis. It is minimally invasive and hopefully will allow me to get volume to my voice and resolve my throat pain/irritation. This is the procedure I am having in a nutshell.

Laryngoscopy and vocal cord injection is performed to address a paralyzed vocal cord. This procedure "plumps up" the paralyzed and atrophied vocal cord to allow the opposite vocal cord to come in contact with the paralyzed vocal cord during speech, coughing and swallowing. This generally will improve the voice and prevent secretions and swallowed liquids from going into the trachea (wind pipe). This will allow the patient to more effectively clear secretions from the airway and help prevent aspiration pneumonia. Under general anesthesia, a scope is gently inserted into the throat through the mouth. A telescope or microscope and long, fine instruments are used to reach the vocal cord. Vocal cord injection is generally performed on an outpatient basis. If you have medical conditions such as sleep apnea or bleeding disorders your surgeon may insist that you spend one night in the hospital for observation. Hospital admission may be required if excess bleeding or swelling are encountered during the procedure .

Your pain and repeated aspirations are troublesome and I sense you do not have a good sense of why your physicians are "waiting" to address your issues. Is there anyone else you can confide in to alleviate your concerns and give you a clearer picture of what exactly your problem is and what can be done to mediate your discomfort?...your PCP perhaps? 

Take Care all....Blessings and Gratitude, DFK

 

[Sillycat1957]

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 😸

[Tom Galli]

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

[Rower Michelle]

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

[Sillycat1957]

Michelle,

Thank you, that's so funny Kill Bill! Yes, slay the monsters!

Roseann

[DFK]

Yeah, exceptional great news Sillycat...I'll help you sing it from the mountaintops....oops, maybe after my vocal cord surgery! For now, heartfelt hugs of relief for awesome results. We're all bathing in your glorious attitude adjustment to gratitude.

 

Take Care, DFK

[Charles]

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

[Kate7617]

On 9/23/2018 at 2:13 PM, Lisa R said:

How is everyone tolerating durvalumab? what are your thoughts about it?

I realize your posting is from 9/23/18 however I was diagnosed 1/29/19 had chemo/radiation/ platinum based, and then the Durvalumab nightmare started. I had 5 treatments and I can not tolerate the side effects and now have basal cell skin cancer on my back, so I asked the Doc if there be an alternative to Durval and was told this is the only option, and we will CT scan every 3 months to see if the cancer has progressed. Wow, this really stinks. If there be an alternative and there is anyone that can attest to it, please inform me. thank you.

[DFK]

Kate7617

I am sorry you have had such a tenuous journey with Durvalumab, and now having to contend with basal cell skin cancer.

I am still learning about options and resources but we have some very smart heavy hitters that may be able to chime in and give you some direction. 

Rower Michelle has drilled in me the importance of biomarkers, have you had that done? She also is a proponent for utilizing resources like the Go2 Foundation for assistance when you have questions.

Tom Galli has been around the block and back and is a wealth of information and support.

I can offer you my prayers that you find the support and answers you need.

Take care, DFK

 

[BridgetO]

Hi Kate, 

I'm sorry to hear you're having such a hard time with the Durvalumab. Have you looked for a second opinion about whether you have any other options? If not, you might consider it.

[RonH]

3 hours ago, DFK said:

Rower Michelle has drilled in me the importance of biomarkers, have you had that done? She also is a proponent for utilizing resources like the Go2 Foundation for assistance when you have questions.

Kate7617 - If you haven't had a biomarker test done, insist on it. I spent 10 months on Durvalumab (18 infusions) only to find out afterwards that I was PDL-1 Negative and EML-4 ALK+, so according to studies and all reports I've read, Durvalumab had little or no hope of working. I have since moved on to a Targeted Therapy, which by the way is no picnic either and in many ways, I am having more side effects with it than I did with Durvalumab. The only nice thing about that 10 month experience is that I became acquainted with some very nice and knowledgeable people here.

[DarlaK]

Hi DFK,  I thanks for all this info.  The ENT Dr is not the most forcoming with info and there is no way to actually talk to him.  It really does ease my mind and believe the reason they are waiting is to get me through the next 3 chemo infusions first.  I have not been sleeping during all of this so any tips for sleep and staying so positive during this?  

Hi Sillycat, that IS great news!  I am not taking Durvalumab - chemo for now but I read DFK on vocal cords so just looking for support in this whole treatment journey. 

I am trying to be positive but it is so hard. The anxiety of this cancer crap disease is overwhelming.

So I say hooray to all of you! 

Darla

[Rower Michelle]

Hi Kate-

Gosh, I’m so sorry to hear about the unrelenting Durva side effects.  To piggy back on the others perhaps there is a clinical trial available?  That’s where the GO2FOUNDATION can help find a match or Bridget’s recommendation for a second opinion might come in.  It’s worth pushing this issue over the just wait & see.  Keep us posted!  Hang in there.

Michelle

[Charles]

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!

[DFK]

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

[Tom Galli]

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

[LUNGevityKristin]

On 11/20/2019 at 8:08 PM, Rower Michelle said:

Hi Kate-

Gosh, I’m so sorry to hear about the unrelenting Durva side effects.  To piggy back on the others perhaps there is a clinical trial available?  That’s where the GO2FOUNDATION can help find a match or Bridget’s recommendation for a second opinion might come in.  It’s worth pushing this issue over the just wait & see.  Keep us posted!  Hang in there.

Michelle

LUNGevity has a Clinical Trial Finder and can also match you with a Clinical Trial Navigator.  All of the information is HERE if you would like to go that route.

[Charles]

reality sir, REALITY.....