Sillycat1957

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

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 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 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 😸

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

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

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 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

 

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!

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

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

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!

Hi Darla,
How frightening it must be for you to be uninformed about your options. I can give you a full detailed report next Tuesday after my ENT pre-op appt. But here is what I can tell you that I learned so far. I will discuss specific options with my surgeon on my Tuesday appt. and share more with you.
You need functioning vocal cords to speak, swallow effectively and cough. I had been reporting my Minnie Mouse voice for months with a loss of volume and pitch to my oncologist. I finally got a referral for ENT after 3 months of symptoms and waited another three months to see the ENT.
I don't know what option I will chose but your paralyzed vocal cord needs to touch and meet your functioning vocal cord to be effective so here are the two options that were briefly explained to me.
1) Bulk filler. In layman’s terms, they will inject my paralyzed vocal cord with a filler to move it closer to my functioning right vocal cord. This is not a permanent fix but can hold up for up to 3 years.....I will get more details later.
2) Implant. Surgically implant a "structure" to move the paralyzed vocal cord closer to the working vocal cord. This can be a permanent fix.
3) Both procedures are done under General anesthesia so you will need pro-op clearance which is all the hoops I am now jumping thru.
I have experienced a burning sore throat sensation on both sides of my throat for months. It may be on my right side then it may be on my left side. I just chalked it up to life in the cancer lane....another pain I just have to live with.....been gargling with salt water and baking soda.....if anything to psychologically feel like I'm doing something worthwhile by decreasing oral bacteria count and soothing my throat.
I've been using Manuka Honey as recommended by one of my fellow Durva's when there was a question with the integrity of my esophagus. Well, my esophagus was just fine but I do find it soothing to take a teaspoon if my throat hurts. 
Also, just a side note, your vocal cords close when you are swallowing your food. When one is paralyzed, there may be an opening and  there may be a problem with aspiration of food/liquid to your lungs. I noticed that I had terrible coughing spasms at times so I purposefully would eat slower and not stuff my mouth with so much food, and swallow slowly.
Also, if you need to cough up phlegm or clear your throat, your cough may not be as effective and you may strain your vocal cords if coughing violently. I say this not to scare you but to know what to report to your healthcare team if your are having problems. We are already up to our eyeballs with treatments and stress and if another side effect or problem can be averted, let’s do it. 
You're wise to reach out and I will give you more information when I get it, and if you have any other questions....ask away.
Take Care, DFK
 
 

Hi Bob,
Glad to see your update on treatment plans. First off I am no Dr. I only share my experience with these drugs we get put on. My first line of treat was an aggressive mix of Cisplatin/Etoposide mix, the Cisplatin is also a cytoxix chemo drug, like Gemcitabine, it knocked the hell out of me as far as being fatigued and nauseous for the first week, I helped that by taking Zofran and eating my meals like 4 to 5 times a day, freakin pain in the butt yep, but at least it stopped the pukie feeling, and if I was tired oh well nite nite lol!  My daughter says Chemo gave me narcoplepsy 🤣 There was a point when my Onc was going to switch me to Carboplatin instead of Cisplatin since it's milder, my ears were starting to be affected but I wanted to stay with my original cocktail. That has since resolved on it's own Yay! Oh, and yeah, I have hand and feet tingling which I have an ongoing debate with my Oncologist is it from Chemotherpy or the Durvalumab, which BTW I have more side effects from than the concurrent chemo/radiation go figure! I wish you the best as you move forward in your new line of treatment, for me every time I sat in my chair getting an infusion of Cisplatin, knowing how powerful it was, I let my mind put it to work for my body "Saying now seek and destroy" I know I'm a  weirdo! but it got me thru, whatever gets us thru our dark places, and every radiation treatment "I sang I'm walking on Sunshine" even tho I was laying on a table lol! So as I said I wish you well, keep fighting the fight 😃
 

Hi Bob,
Glad to see your update on treatment plans. First off I am no Dr. I only share my experience with these drugs we get put on. My first line of treat was an aggressive mix of Cisplatin/Etoposide mix, the Cisplatin is also a cytoxix chemo drug, like Gemcitabine, it knocked the hell out of me as far as being fatigued and nauseous for the first week, I helped that by taking Zofran and eating my meals like 4 to 5 times a day, freakin pain in the butt yep, but at least it stopped the pukie feeling, and if I was tired oh well nite nite lol!  My daughter says Chemo gave me narcoplepsy 🤣 There was a point when my Onc was going to switch me to Carboplatin instead of Cisplatin since it's milder, my ears were starting to be affected but I wanted to stay with my original cocktail. That has since resolved on it's own Yay! Oh, and yeah, I have hand and feet tingling which I have an ongoing debate with my Oncologist is it from Chemotherpy or the Durvalumab, which BTW I have more side effects from than the concurrent chemo/radiation go figure! I wish you the best as you move forward in your new line of treatment, for me every time I sat in my chair getting an infusion of Cisplatin, knowing how powerful it was, I let my mind put it to work for my body "Saying now seek and destroy" I know I'm a  weirdo! but it got me thru, whatever gets us thru our dark places, and every radiation treatment "I sang I'm walking on Sunshine" even tho I was laying on a table lol! So as I said I wish you well, keep fighting the fight 😃
 

Whoo Hoo! Way to go! BC Joe 😃 
 
 

Hi all! both those beers sound gross! Sorry, I haven't drank in over 21 years, I can't, 1 is too many and 1,000 is not enough! Lol! I have another disease 😫 oh well, but y'all go ahead and enjoy. Even if I was a drinker I'd have to say no to flavored beer ugh!
I had infusion #6 this week, blood work ok, nothing new in the aches and pains department. So all's good here 👍. Oncologist fixin me up for a PET scan waiting for radiology to call with appointment. Also I have my appointment on Monday with my PCP he keeps a close eye on my overall health. Any concerns I have he gets them looked at. Neurologist end of month also.
Enjoy the weekend, keep fighting the fight 

Hi Bob,
Glad to see your update on treatment plans. First off I am no Dr. I only share my experience with these drugs we get put on. My first line of treat was an aggressive mix of Cisplatin/Etoposide mix, the Cisplatin is also a cytoxix chemo drug, like Gemcitabine, it knocked the hell out of me as far as being fatigued and nauseous for the first week, I helped that by taking Zofran and eating my meals like 4 to 5 times a day, freakin pain in the butt yep, but at least it stopped the pukie feeling, and if I was tired oh well nite nite lol!  My daughter says Chemo gave me narcoplepsy 🤣 There was a point when my Onc was going to switch me to Carboplatin instead of Cisplatin since it's milder, my ears were starting to be affected but I wanted to stay with my original cocktail. That has since resolved on it's own Yay! Oh, and yeah, I have hand and feet tingling which I have an ongoing debate with my Oncologist is it from Chemotherpy or the Durvalumab, which BTW I have more side effects from than the concurrent chemo/radiation go figure! I wish you the best as you move forward in your new line of treatment, for me every time I sat in my chair getting an infusion of Cisplatin, knowing how powerful it was, I let my mind put it to work for my body "Saying now seek and destroy" I know I'm a  weirdo! but it got me thru, whatever gets us thru our dark places, and every radiation treatment "I sang I'm walking on Sunshine" even tho I was laying on a table lol! So as I said I wish you well, keep fighting the fight 😃
 

20 years here. ODAAT. 

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 Everyone
Just quick update met with both docs yesterday and this afternoon and from my CT last week radiation is off the table as he said it would do more damage than it would do good as i have had two previous doses.There is still progression from the last scan in August to the one last week.So the new treatment starting later this month will Carboplatin and Gemcitabine on separate daysevery three week for four cycles, Then as usual the Ct scan.Glad to be back (OUCH) In the treatment cycle although she did give me some strong warnings on the Gemcitabine side effects  as  blood transfusion is possible  if Anemia gets bad. 
Treatment #3 here i come😎
Bob

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

Barb,
I've never gotten a flu shot, ever, they always scared the bejesus outta me! Hope you continue to feel better 😀

Michelle,
Thank you for attending  and being a "lurker" lol Bringing back that info to share with us Durva people is awesome news. I hope you had chance to let the Dr see your positive light 😃
I can't wait to read the outcome of the study! I read an article that was sent to me back in August, before I started Durvalumab about immunotherapy and the gut microbiome and over the counter probiotics. Your right about the good being bad some things just don't make sense sometimes I reckon.
Thanks again for the update, have a good night 😃

Hi Ron. I remember Elizabeth well lol! I hope the side effects are just your body adjusting to the new medicine. But there are other drugs for ALK+ people too, that may be better for you right? Good luck and God Bless!
Keep kickin' cancers *ss 😃 and have a nice weekend