Charles

Barb1260-Shocking is putting it nicely....I myself have a few choice adjectives that I use when I need to express my "disappointments". I try to stay positive and in the "light" because the dark places I can go to is nasty and not conducive to where I need to be. My husband is supportive but he, being of the testosterone variety, always try's to find a solution, or a path to work things out. Sometimes there is no path or working out our emotional disappointments, but you and I know, we've ridden this ride before and we're still here, and we can do it again. Get those stretched out big girl panties and put‘em on again.....laugh, cry, and stay in the light of positive healing vibes. You can do this Barb, one minute at a time, one hour at a time, one day at a time. Keep us posted with updates. Sending you ❤️ DFK

Laurel and Tomm:
Thanks Laurel for info on oncology mouth rinse. During my radiation and chemo treatments I had zero issues with my throat or swallowing. I maintained my weight and appetite. But apparently, radiation adverse events can pop up any old time. And my oncologist is surmising that my voice issues may be stemming from acid reflux or nerve damage.....both adverse post events from radiation. So even when you sail thru one treatment, the bogeyman is there to catch you later on.....darn it.
We'll see what pans out when they can visually inspect my vocal chords and esophagus. Then and only then will we have a definitive answer.
In the mean time I love what I have read on Manuka Honey and I will purchase some. The three a's....antibacterial, antiviral and anti inflammatory.....where can you go wrong.
“Manuka honey is a unique type of honey.
Its most notable attribute is its effect on wound management and healing.
Manuka honey also has antibacterial, antiviral and anti-inflammatory properties that may help treat numerous ailments, including irritable bowel syndrome, gastric ulcers, periodontal disease and upper respiratory infections.”
Thanks Tomm for info, for sharing.
Barb1260 -Congrat on #10 and being in the Durvalumab double digits. Are you doing anything special for mouth sensitivity and burning sensation? Can you tell me what they used to unclog your port on your next visit? I thrive on nitty gritty details like that....
Ron H- Sorry to hear of PETSCAN uptake and need for biopsy. Please keep us informed of the biopsy results. Reaching #18 is an accomplishment....job well done. I do believe that all of us here, receiving Durvalumab, are strong fighters and advocates. We are doing what we need to do to prolong our lives, to keep our cancer at bay. Not always an easy journey. Your articulate writings and knowledge base is admirable, just as admirable as you are now, facing this new unknown you've been handed. Thank you for sharing your story. Thyroid saga? Don't keep us hanging too long......
Take Care everyone......DFK
 
 
 
 
 

Ron-
So sorry to learn of your latest update, will be thinking of you as you go through the next steps. You guys in the Durva Club rock and roll.  

Sorry Ron. Of course you can hang out with us here. You made it to 18, big accomplishment. I’m thinking you are going to be NED. 

Ron,
I understand the saga of the long needle! But, I see goodness regardless of biopsy result: stereotactic radiation. I’m a fan and love the idea of frying tumors. 
Stay the course. 
Tom

My updates - post latest CT Results: As I noted a week ago, my last CT scan about 2 weeks ago indicated a possible reoccurrence in one spot so I had another CT/PET Scan this week. The PET scan did not indicate any new lymph node involvement and none of the previous lymph nodes now indicate any uptake what-so-ever, so that was the very good news. Also good was that one of two  tumors in my lung also indicated no update and appeared to now to be just scar tissue. Although it was hoped that the one "active" CT indication was due to an infection, unfortunately it did indicate an uptake and some enlargement on the PET scan in that one location. It's yet to be confirmed to be an actual reoccurrence of the cancer there but I now get to go through another CT Guided Lung Needle Biopsy again. I still have "fond memories" of the last time over a year ago of being strapped down and completely immobilized, and then seeing the biggest needle I've ever seen in my life as it was getting ready to be shoved in between my ribs and into my lung. A lasting impression to say the least. Honestly in reality the last time the lung needle biopsy was completely painless both during and after, but just the thought of it causes some physiological discomfort. Plus there is always the risk of the needle collapsing a lung. In any event, my Durvalumab treatments have now been stopped (after 18 infusions) until after the biopsy. Unfortunately the Onc says that even if it this latest ends up being benign, that he likely may not have me restart the immunotherapy as I am was already in month 10 of the 12 month time limit period that he follows. I am trying to push him to resume the infusions if the biopsy indicates it not to be cancerous, but if it is cancer again, I am for sure off the Durvalumab. However since there is only one active indication now, with no apparent active lymph node involvement anywhere else now, and there is no indications it spreading anywhere and my brain MRI was completely clear, he says that I may be a candidate for stereotactic surgery to destroy the one tumor. So within the next week or so, after being off my Plavix and Xarelto in preparation, I will have the biopsy to see where I go from there. 
All in all, it could be worse, a lot worse, but I am disappointed to be off the Durvalumab.
Another long story/saga on the most recent Thyroid testing, but I'll save that for another possible post.
If no one objects, I'll stick around the Durvalumab "club" and follow how everyone is doing.
Thanks for everyone's support …... it's appreciated.
-Ron

DKF-yay on #17.  I had #10 today. No issues except blood work not done until after because my port wouldn’t give blood. They had to put something in it and let it sit for 45 minutes to unclog it. I’ll get the results next week. Nobody is concerned about the mouth issues I had. The PA said if it goes away in a couple days it’s probably not related. My thoughts are-who really knows?  I asked how many patients got through the 26 infusions from her practice. Said 2 or 3 with very minor side effects so that’s a positive. 

DFK, Opal, Barb1260 & Tomm.
Thank you for your thoughts, prayers and well wishes. I have to say, yesterdays news from the CT hit me hard emotionally. However overnight just reading your posts helped a great deal. Today is another day and time to resume the fight. Always have had a stubborn streak, so I don't give up easily.
Tomm - When I was originally diagnosed with 3A NSCLC over a year ago and having did a quick study on the subject, I asked the Onc about this expression testing. His statement to me at that time was that the Standard of Care for what I had was ChemoRadiation, more radiation and then if necessary, Immunotherapy which would be Durvalumab provided there was no progression during the chemo and radiation and that the PDL-1 Expression would not affect the treatment plan if there was no progression. As such, I am not sure if the PDL-1 Expression was ever even determined. I've looked and I do not see it in any of the pathology reports. I will ask him again here in another week after the PET scan.
Thanks again ALL.
Ron
 

Ron-congratulations on the brain being ok. Sorry about the tumor issue, I am keeping my fingers crossed that it’s an infection or some other benign issue. I don’t get cortisol testing but I’m going to discuss this next week. I don’t understand why I’m gaining so much weight when I’m counting every calorie and fat and carb and eating way less than the app I’m using says I should be eating. Keep us posted!  

Good Day to all,
 
#17 infusion is a done deal this past Tuesday.
Labs remain within normal parameters. YES! 
Got a mean case of generalized itchies within a few hours of infusion, abated with an antihistamine. Only needed that one dose.
Always get mild headaches for a day or two after the infusions. They abate on their own, no analgesics required.
Experienced a bit more fatigue than usual so I laid back for a good 24 hours before I felt "normal" again. 
Voice still lacking volume and pitch at times, waiting on ENT referral. Oncologist suspecting vocal chord nerve damage from radiation treatments x30 back in November to December 2018, since acid reducers x2 months have not alleviated the problem. I dunno, I just go with the flow and my grandkids thinks I'm hilarious talking like Minnie Mouse. Oncologists can guess all he wants but ENT needs to do a visual.
And as an added bonus, Oncologist just threw in a G.I. referral in case I have late stage esophagitis, again a late entry from radiation. He said it's about the right time to experience some late effects of esophageal scarring....Oh...ok! Dazzle me won't you with these added surprises.
Added another pound to my weight. My oncologist is perplexed. I have gained 16lbs in 8 months.....not a whole lot but it's uncanny how I gain a pound with each infusion. No symptoms of fluid retention and I am by no means lacking in physical activity....I do my one hour of biking exercise every other day whether I am feeling the love for it or not. It is my contribution, my Rx, for my continued good health. Appetite pretty much the same. Strange!
Ok, getting some of everything but the kitchen sink thrown at me.....let's get it ruled out. Don't like the feeling of a compromised voice if from esophagus with acid reflux or nerve damage.
On a positive note, I have tolerated these infusions extremely well. And I am living a pretty near perfect functional life. I use to say, hey, when my infusions are done in January, I will _____________. Then I thought, what?, why wait, live it fully now. I feel fortunate to be alive and well one year after initial diagnosis Stg 3B NSCLC and 8 months into immunotherapy.
Just a post script.....last Cat Scan I had was end of May for pneumonitis. MD will not do another scan until end of immunotherapy. Which equals to 8 months. He gave me his rationale and it all falls into place though it is not in line with best practice algorithm recommendations. We went back and forth addressing my concerns and worries. I'm okay (for now) with his response. 
Thank you all for your support.....always helps me to articulate what is occurring by writing it down. 
With Blessings and Gratitude, DFK
 
 
 

Tomm
sorry about them Ducks, they Had em till the very end though, what a nail biter.
DFK,
 them hands try to keep us from crackin' our punkins when we fall, now if we could just keep from crackin our hands huh?
 
Hang in there everybody.

Tomm
glad to hear your tsh coming down and your feeling better, levo working for you and me. My tsh down to 31 now and I have weaned off the prednisone (10 mg) and hopefully won't need it again but have them 'just in case"  Now if this Hurricane coming at us in Florida turns north and goes back out to sea it will be a wonderful weekend!

Tomm
glad to hear your tsh coming down and your feeling better, levo working for you and me. My tsh down to 31 now and I have weaned off the prednisone (10 mg) and hopefully won't need it again but have them 'just in case"  Now if this Hurricane coming at us in Florida turns north and goes back out to sea it will be a wonderful weekend!

Ron
praying for a great pet scan for you where no biopsy will be necessary and #19 will be administered asap. My Onc has said the ones I've been delayed on (4) will also be made up after projected end date . Just got #12 today and feeling a lot better. It seems the guidelines vary where ever you go and are being treated, and what and how severe your symptoms are. Your PCP can also be invaluable for referring or scheduling "things" that are unscheduled that you feel are necessary that your Onc may not be too worried about,  Hang in there man, my prayers are with you. .

Tomm/glad you’re getting less fatigue and you are taking the thyroid med. after last week’s infusion I got really tired on Saturday and that lasted until yesterday. So I guess my side effects are starting. I’m also experiencing mouth sensitivity and a burning sensation. Just like my eyelids did and eventually went away. Another thing to discuss next Thursday. Still not complaining as it’s nothing debilitating and I can deal with it. I can’t wait until we do #13-we ca celebrate the halfway point. Have a good weekend. 

I got infustion #10 yesterday with no new issues and less fatigue. I did discuss getting some prednisone and my onc said I need levothyroxine to replace lost hormons, it is working. 
blood work from 4 weeks ago and yesterday
glucose from 188 to 128
Bun from 25 to 15
creatinine from 1.5 to 1.2
TSH from 139 to 56.59 .. I'll be getting this test every two weeks for awhile
getting ready to watch Pac  12 football, go Ducks...
 
 

Ron
praying for a great pet scan for you where no biopsy will be necessary and #19 will be administered asap. My Onc has said the ones I've been delayed on (4) will also be made up after projected end date . Just got #12 today and feeling a lot better. It seems the guidelines vary where ever you go and are being treated, and what and how severe your symptoms are. Your PCP can also be invaluable for referring or scheduling "things" that are unscheduled that you feel are necessary that your Onc may not be too worried about,  Hang in there man, my prayers are with you. .

Well #%!@. The results from my latest CT and MRI from last Friday are in. First, the good news: The Brain MRI indicates no spread or concerns there. Now, the not so good news: The CT indicates a “worrisome” possible progression in one tumor in my right lung. No significant changes to the lymph nodes or the other tumor, however the one appears to have enlarged. The ONC and Radiologist says that they cannot be sure as it could be simply an infection there, or it could be just a delayed radiation fibrosis, or in the worst case, progression. Therefore not knowing, my Durvalumab Infusion today (was to be #19) was withheld. I am going to be put on antibiotics for a week and then have a PET Scan. The day afterwards I will then see the ONC again, but will in all probability will then be scheduled for another CT Guided Lung Needle Biopsy for confirmation. He doesn’t want to schedule the biopsy until after the PET Scan, and then due to also being on blood thinners, I have to be off them for a week before the biopsy. The IR’s tend not to allow one to be on blood thinners and anticoagulants due to an possible uncontrollable bleed. Of course, my cardiologist is concerned about me being off them since I am in A-Fib. Last year, the Cardiologist won the argument and I was permitted to at least stay on aspirin while off the Plavix and the Xarelto. I guess another “discussion” between the Radiologists and Cardiologists and the ONC will need to take place.
 A couple of things: Regarding Durvalumab and routine Cortisol testing; my ONC says that they do not normally test Cortisol readings for patients on Durvalumab unless there are adrenal problem symptoms such as the other blood work going out of the normal ranges. My blood work, with the exception of my TSH levels, looks good. In regards to the TSH testing, with the standard protocol my ONC follows he only tests TSH levels once every 6 weeks, so I had that test today and should hear within a few days where I am on that (having been on 75mg Levothyroxine for over 2 months). Additionally, and I am not overly pleased to hear this, but my ONC says that his practice does not make up Durvalumab infusions that are missed during the 12 months of infusions, with the calendar starting on the day of the first infusiuon. It is whatever number of infusions you can get completed within that 12 month (52 week) period, whether it be 18, 19….or up to 26. There are no “make-ups” past the 12 month anniversary and in his judgement getting the 24 or 26 infusions holds no magic and getting all 26 is not necessarily better. I know a number of people here have the understanding that if they are off the Durvalumab temporarily for any reasons, that they will still receive all 26 infusions even if it runs over the 12 month period. Can anyone confirm that? Of course in my case, if progression is confirmed, then I am off the Durvalumab anyway. Can’t say that I have ever hoped for an infection, but I hope the antibiotics helps clear the scans and I can resume the Durvalumab.
While things could be worse, I've sure had better days!

Tomm,
The bottom line, I have found is this : It is what you can stand and or how hard your onc is willing to work on your side effects before sending you to a specialist or pulling you off durva. I am a military veteran so tiredness and fatigue has never been a stranger to me and I have found that everybody's definition of the two vary with the definer's abilities. That being said, The endocrine (Thyroid) side effects and opthalmalogical ones are a little more rare than the fatigue and tiredness ones on durvalumab. At a prolonged tsh level of 59 I experienced muscular failure at minimal effort (chewing food or standing for short periods of time) experienced slurred and slow speech patterns , a weight gain of 30 pounds in one month, light sensitivity and visual blurring and changes in my eyes with swelling of the face and eyes, and felt like I was having a slow stroke, if you will, and was getting weaker and weaker day by day as well as doing a durvalumab "waddle" whenever I walked. I have been on prednisone since my 2nd infusion and have shown very good (I think) tumor shrinkage with no mets in spite of all the prednisone up to this point. I have quite a few bottles of different mg. of prednisone as well as a prednisone pack and a "just in case" 20mg. prescription that stays current as I said, just in case. My oncologist has all but let me write my own prescriptions for everything as he knows I want to kill this cancer and will crawl up to death's door to stay on Imfinzi. My Onc also has a good friend on the Pacific Coast Imfinzi trial team that has told him that they are prescribing ongoing prednisone of 10 mg. while staying on Imfinzi and they are having good results doing it. Truth is, Prednisone has helped me to stay on Durvalumab and I will continue 10mg. per day until no longer necessary  Thanks be to GOD, radiation technology, Chemo, Sodium Bicarb, and prednisone. Results do vary though.....

Tomm,
The bottom line, I have found is this : It is what you can stand and or how hard your onc is willing to work on your side effects before sending you to a specialist or pulling you off durva. I am a military veteran so tiredness and fatigue has never been a stranger to me and I have found that everybody's definition of the two vary with the definer's abilities. That being said, The endocrine (Thyroid) side effects and opthalmalogical ones are a little more rare than the fatigue and tiredness ones on durvalumab. At a prolonged tsh level of 59 I experienced muscular failure at minimal effort (chewing food or standing for short periods of time) experienced slurred and slow speech patterns , a weight gain of 30 pounds in one month, light sensitivity and visual blurring and changes in my eyes with swelling of the face and eyes, and felt like I was having a slow stroke, if you will, and was getting weaker and weaker day by day as well as doing a durvalumab "waddle" whenever I walked. I have been on prednisone since my 2nd infusion and have shown very good (I think) tumor shrinkage with no mets in spite of all the prednisone up to this point. I have quite a few bottles of different mg. of prednisone as well as a prednisone pack and a "just in case" 20mg. prescription that stays current as I said, just in case. My oncologist has all but let me write my own prescriptions for everything as he knows I want to kill this cancer and will crawl up to death's door to stay on Imfinzi. My Onc also has a good friend on the Pacific Coast Imfinzi trial team that has told him that they are prescribing ongoing prednisone of 10 mg. while staying on Imfinzi and they are having good results doing it. Truth is, Prednisone has helped me to stay on Durvalumab and I will continue 10mg. per day until no longer necessary  Thanks be to GOD, radiation technology, Chemo, Sodium Bicarb, and prednisone. Results do vary though.....

Prednisone and Immunotherapy
I found this interesting.....and how far down the rabbit hole would you want to go?  Prednisone usage is still being studied and tweaked to get that nice balance. I truly believe that we are the Trail Blazers that will help with the maximum efficacy of immunotherapy for future Durvalumab users while minimizing and addressing adverse events. 
https://www.ascopost.com/issues/november-10-2018/corticosteroids-and-immunotherapy/
Thank you everyone for providing conversation and open dialogue.
With Gratitude and Blessings, DFK
 

Tomm,
The bottom line, I have found is this : It is what you can stand and or how hard your onc is willing to work on your side effects before sending you to a specialist or pulling you off durva. I am a military veteran so tiredness and fatigue has never been a stranger to me and I have found that everybody's definition of the two vary with the definer's abilities. That being said, The endocrine (Thyroid) side effects and opthalmalogical ones are a little more rare than the fatigue and tiredness ones on durvalumab. At a prolonged tsh level of 59 I experienced muscular failure at minimal effort (chewing food or standing for short periods of time) experienced slurred and slow speech patterns , a weight gain of 30 pounds in one month, light sensitivity and visual blurring and changes in my eyes with swelling of the face and eyes, and felt like I was having a slow stroke, if you will, and was getting weaker and weaker day by day as well as doing a durvalumab "waddle" whenever I walked. I have been on prednisone since my 2nd infusion and have shown very good (I think) tumor shrinkage with no mets in spite of all the prednisone up to this point. I have quite a few bottles of different mg. of prednisone as well as a prednisone pack and a "just in case" 20mg. prescription that stays current as I said, just in case. My oncologist has all but let me write my own prescriptions for everything as he knows I want to kill this cancer and will crawl up to death's door to stay on Imfinzi. My Onc also has a good friend on the Pacific Coast Imfinzi trial team that has told him that they are prescribing ongoing prednisone of 10 mg. while staying on Imfinzi and they are having good results doing it. Truth is, Prednisone has helped me to stay on Durvalumab and I will continue 10mg. per day until no longer necessary  Thanks be to GOD, radiation technology, Chemo, Sodium Bicarb, and prednisone. Results do vary though.....

Tomm,
The bottom line, I have found is this : It is what you can stand and or how hard your onc is willing to work on your side effects before sending you to a specialist or pulling you off durva. I am a military veteran so tiredness and fatigue has never been a stranger to me and I have found that everybody's definition of the two vary with the definer's abilities. That being said, The endocrine (Thyroid) side effects and opthalmalogical ones are a little more rare than the fatigue and tiredness ones on durvalumab. At a prolonged tsh level of 59 I experienced muscular failure at minimal effort (chewing food or standing for short periods of time) experienced slurred and slow speech patterns , a weight gain of 30 pounds in one month, light sensitivity and visual blurring and changes in my eyes with swelling of the face and eyes, and felt like I was having a slow stroke, if you will, and was getting weaker and weaker day by day as well as doing a durvalumab "waddle" whenever I walked. I have been on prednisone since my 2nd infusion and have shown very good (I think) tumor shrinkage with no mets in spite of all the prednisone up to this point. I have quite a few bottles of different mg. of prednisone as well as a prednisone pack and a "just in case" 20mg. prescription that stays current as I said, just in case. My oncologist has all but let me write my own prescriptions for everything as he knows I want to kill this cancer and will crawl up to death's door to stay on Imfinzi. My Onc also has a good friend on the Pacific Coast Imfinzi trial team that has told him that they are prescribing ongoing prednisone of 10 mg. while staying on Imfinzi and they are having good results doing it. Truth is, Prednisone has helped me to stay on Durvalumab and I will continue 10mg. per day until no longer necessary  Thanks be to GOD, radiation technology, Chemo, Sodium Bicarb, and prednisone. Results do vary though.....

Tomm,
The bottom line, I have found is this : It is what you can stand and or how hard your onc is willing to work on your side effects before sending you to a specialist or pulling you off durva. I am a military veteran so tiredness and fatigue has never been a stranger to me and I have found that everybody's definition of the two vary with the definer's abilities. That being said, The endocrine (Thyroid) side effects and opthalmalogical ones are a little more rare than the fatigue and tiredness ones on durvalumab. At a prolonged tsh level of 59 I experienced muscular failure at minimal effort (chewing food or standing for short periods of time) experienced slurred and slow speech patterns , a weight gain of 30 pounds in one month, light sensitivity and visual blurring and changes in my eyes with swelling of the face and eyes, and felt like I was having a slow stroke, if you will, and was getting weaker and weaker day by day as well as doing a durvalumab "waddle" whenever I walked. I have been on prednisone since my 2nd infusion and have shown very good (I think) tumor shrinkage with no mets in spite of all the prednisone up to this point. I have quite a few bottles of different mg. of prednisone as well as a prednisone pack and a "just in case" 20mg. prescription that stays current as I said, just in case. My oncologist has all but let me write my own prescriptions for everything as he knows I want to kill this cancer and will crawl up to death's door to stay on Imfinzi. My Onc also has a good friend on the Pacific Coast Imfinzi trial team that has told him that they are prescribing ongoing prednisone of 10 mg. while staying on Imfinzi and they are having good results doing it. Truth is, Prednisone has helped me to stay on Durvalumab and I will continue 10mg. per day until no longer necessary  Thanks be to GOD, radiation technology, Chemo, Sodium Bicarb, and prednisone. Results do vary though.....

Tomm-I forget who posted it a while back, maybe a constant low dose of prednisone will help?  Low enough to stay on the Durvalumab. I think it’s 5-10mgs. Worth asking about.