Charles

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

Good to hear from you Charles! and thank you ! I did have a 2 week break from treatment and pretty much all of my pain went away, so yes it is from the Durva 😃 however, a lot of my chest pain is stress related as I am dealing with a lot of personal and financial issues along with this nasty cancer beast =( but I have a pill for that too haha! I just have to pick my battles with care these days.  Actually, today I see my counselor and physically I really feel not bad 😃 so I'm hoping for a good day!
I have heard some good things about the CBD oils, I'm a light weight, everything pretty much knocks me flat out hahaha! My Neurologist has told me NO! to both Medicinal Marijuana and CBD oil on my last visit in June. I have Petit Mal seizures sometimes lasting up to 5 minutes and he said he doesn't want me wandering around high as a kite in a fog looking for a cookie that isn't there lol!   So for now I think I will try more meditation to help with the stress, keep close to the members of my family that are positive and relax and breathe 😃

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. Seems this pain is common. Onc is calling it Pneumonitis and not pleuritis and sending me to the pulmonologist to make sure we get it gone. I’m missing one dose and then back on schedule. At first I was miffed that she’s making me go see the pulmonologist and not just giving me the roids so I can stay on schedule. Her thought was to get it right so it doesn’t get worse and get the pulmonary function tests too. Nervous to take a break but better than more lung damage. 

RonH.
Very sorry about your results and the sadness and ineptitude you have seen in your journey , thoughts and prayers to you and please keep us posted if you can because you are still a durva trailblazer.
 
Finally received #13 tuesday and found out why they didn't have the Imfinzi last tuesday when I went. Seems the Fedex person delivering that days shipment of medications delivered it to the wrong place and the medications sat somewhere unrefrigerated for too long and had to be destroyed. Nothing new to report otherwise

RonH.
Very sorry about your results and the sadness and ineptitude you have seen in your journey , thoughts and prayers to you and please keep us posted if you can because you are still a durva trailblazer.
 
Finally received #13 tuesday and found out why they didn't have the Imfinzi last tuesday when I went. Seems the Fedex person delivering that days shipment of medications delivered it to the wrong place and the medications sat somewhere unrefrigerated for too long and had to be destroyed. Nothing new to report otherwise

Ron H
sorry to hear your results but it sounds like you have a team looking out for you, I vote for  stereotactic treatments, it worked for me twice. When you get your Bio-test back they may have another targeting drug for you if you need it. Keep blazing the trail with us.

Ron. Sorry about the results. One door closes and another opens. I’m sure your team will get it under control and you will get NED in the future. Fight on and keep us  posted. Once a Durva always welcome!!

Well the biopsy results are in. I am officially off the Durvalumab Immunotherapy after 18 infusions. All the previous tumors and lymph nodes were clear except for one lousy spot. They are not sure if it is residual cancer that the chemo/radiation/more chemo/Durvalumab didn't quite get rid of and it started growing again, or its a recurrence in the same spot, but it's there and the Onc says it's time to move on to other potential treatments. He does not believe continuing with the Durvalumab to be beneficial for me. (He says I'm welcome to get a second opinion if I wish but I don't see much need to). 
The next step is unknown but the biopsy specimens from Monday along with blood samples taken today are being sent off for biomarker testing (by Tempus). Unfortunately it takes 3 to 4 weeks to get the results back. In the meanwhile, the Med Onc will be referring me back to the Radiation Onc that I used for my initial radiation treatments. He believes that they may be able to do stereotactic treatments on the one remaining active tumor but he isn't sure. I'm just waiting for the Rad Onc to call me back with available appointment days/times. If given the option and the Rad Onc thinks that she has a reasonable chance of getting it, I will elect to have that done next. At least the actively growing tumor in the right upper lobe is not near any other organs or critical spots that I know of. He didn't believe that actual surgical removal was a viable option after all the chemo and radiation that I've already had. Sounded like the Med Onc was thinking in the lines of targeted therapy dependent on the biomarker results if the stereotactic radiation is not an option or doesn't work.. 
Some days you just want to go to bed and pull the blankets over your head and forget about everything. But tomorrow is another day to resume the journey in fighting the cancer again. Wishing all the Durvalumab club members success!! I'll stick around and keep everyone posted.
Oh I forgot to write about the thyroid testing saga last month (which seems minor now, but irritated me greatly at the time): Although I had saw on the doctors orders that I was supposed to have all the normal blood tests but in addition a thyroid panel with TSH had been requested. I personally looked at the orders myself as the infusion nurse was accessing my port to draw the blood samples and confirmed that. Then when I saw the Onc later that day and he also confirmed to me the Thyroid panel test had been ordered. When no results came by Friday morning I emailed their office to inquire. That's when the finger pointing started. They first blamed the lab, who then blamed the infusion nurses, who then blamed the doctor, who then blamed the lab, and around and around it went but in the end, no one had sent the blood off to have the thyroid panel tests done. Needless to say, they then had one very upset patient on the phone. Initially they said that I needed to come back in to have more blood drawn but as it was Friday afternoon, it was too late. They then called me back a little while later and said that they still had a vial from Monday that they could use. I said okay and they rushed it off to the lab. When I was back in to see the Onc the following week, before arriving I saw the test results. The T3, T4 and the FTI results were there, but no TSH reading. Furthermore the results were virtually identical to the ones that I had received two tests before that. So when I saw the Onc I noted that the results were for all intents were identical to a previous one several months ago, he immediately caught on that I was implying that they had used a much older blood sample than what they said. He assured me that they only hold samples 1 week and what was tested was from the most recent blood draws. He had no explanation why there was no TSH reading, but with the T3/T4/FTI being the same as several months before, he expected that the TSH would be as well and went ahead and increased my thyroid med dosage. I think I kind of pissed him off with my implied accusation, but they are now very aware that I am checking everything they do and say, and will question anything that does not seem quite right. Oversights do happen and I understand that but I "suggested" that they needed better quality control to assure that what was ordered by the Onc was actually getting correctly done.
Well since I'm on my soapbox now, I might as well say that the worse part of the biopsy Monday was in Recovery. Apparently my biopsy was the least serious procedure in the recovery area that I was in. Across the isle, there was an frail elderly lady that was in a lot of pain and was convinced she was dying and was crying for her family. Her vitals were swinging everywhere and her body temperature was dropping. They even brought in a potable heater that had a hose to blow warm air under her blankets. The nurses were running around trying to help and get the doctor there stat. However by the time I was released, she was doing better and her son was there. I hope she made it. Then in the next room over there was an elderly man in his 70's that apparently had a heart attack and was being informed that that he needed a quadruple heart bypass and that it had been tentatively scheduled for tomorrow (Thursday). The doctor explained the procedure to him and his wife and what would happen and that the surgeon would be in the next morning to discuss further. Of course as soon as the MD left in comes the "financial people". Apparently he is on Medicare and it will only pay for 80% of the expected costs and the hospital wanted to know when they could expect payment of the balance and that they "request" payment upfront. (I've had that debate with them before on the "we request" vs "we require" upfront payment. Normally they request it, but don't actually require it, they just imply they do. I've heard that the financial people get a bonus if they obtain payment in advance and some are quite aggressive about it. Once I even got out of the chair and started for the door before they called me back and told me that they could wait to bill me for the balance after they received the insurance payment.) Anyway I then had to listen to his wife and family assure him that they would find the money somehow, but he didn't want to wipe out their savings so he was being reluctant to even agree to the bypass. It was a sad story and I hope and pray that it works out for them. The recovery area sort of made my miserable day on Monday seem very trivial in comparison.
Until later...……….
-Ron

Good Wednesday to all,
Barb-Thanks for update on plan for mystery nodule.
RonH-Result day....prayers and thoughts with you
Had #18 infusion yesterday. Blessedly uneventful. All my labs remain within normal parameters
Ongoing side effects since initiation:
Localized itching to my back area remains constant-Steroid cream works
Mild headaches for a day or two after infusions, never requiring analgesics
Generalized aches and pains to thoracic chest area and back.....more irritating than painful. Sometimes I take Motrin 800mg just to be done with it. Have used Klonopin in the past couple weeks and was surprised how nicely it abated my chest/back pain. Klonopin is prescribed for M.S. neuropathy pain too. Klonopin was originally prescribed for my anxiety when I was diagnosed.
Hoarseness persists, pending ENT and GI consultation. EGD scheduled for Oct 1st ( Upper GI scope). Oncologist suspects post radiation esophagitis though I have never had any difficulty swallowing, any heartburn or acid reflux (that I am aware of.)
Unrelenting fatigue. I continue to pace my tasks and stick with my exercise program every other day.
Weight gain 18lbs since start of Durvalumab. Puzzling as my intake has not increased and my exercise  program has been expanded.
Tomm-I have been unable to find Manuka Honey 15 UMF or higher here locally so I want to order online. Any recommendations on brand. When researching brands I did read that some companies were fined for diluting or overstating their UMF. I’d appreciate any ordering leads. 
With Blessings and Gratitude to all
DFK
 
 

DFK-When I spoke to the PA about the 5mm mystery nodule, she said we will watch it for now. Because I usually see the Oncologist to go over scans, I moved up that appointment to Thursday before the infusion. The scan was 2 weeks early so the follow up wasn’t until October 3rd. Not that I don’t trust the PA, but this is my life, I now have a few questions that I need her to answer. 

Barb,
Ct scans always depress me because other than the beast there are other things I am reminded, that are not going away in my case. and, words and phrases the radiologist uses to describe some things such as "noted changes'  "new" anythings,  "degenerative" this or thats anything 'plueral" "possible ongoing inflammation" Annuerisms and masses,  I kindof know what LLoyd bridges charachter in the old funny movie Airplane meant by ' guess I picked the wrong day to quit sniffing glue", or drinking, or smoking pot and this is quite possibly the way I deal mentally with depressing situations as opposed to taking the ever increasingly popular "easy' way out,  and I am going to be like Forrest Gump on that one and say " that's all I'll say about that"
Trying my best to think about comedic or hilarious thoughts occupies my mind so depression doesn't set in too deeply because I know the beast wants me to be scared, it wants  me to worry so my body will secrete the enzymes and hormones or whatever it is necessary for it to grow and live while using my heart, brain, liver, kidneys, colon or whatever else as footstools while it kicks back and depletes and deceives my bodily resources into believing it is "one of the boys' AND I SAY NO WAY! wITH GOD'S  help we are going to turn the tables on the beast around here and we are going to use all the what-ifs, kitchen sinks, plans b.c. and d or all the way to z to throw at it and using it's own decept against it if at all possible while on this ominous journey .

Hey Charles. I know it’s easy to fall down that black depression hole.  I tend to dwell on the bad parts of the results and not the good. I should be happy the right side tumor is stable and not one lymph node was mentioned. I also don’t understand why they do CTs then PETS if they find something. Makes more sense to me to get all the information the first time. But I’m not a doc and I’m sure it’s insurance related because I had to fight for the last PET. 

Barb - The way it was explained to me by my Radiation Onc was that because the PET scan is a significantly higher cost than a CT, the Insurance Companies refuse to pay for it unless a "medical necessity" is proven first, which a CT helps provide. I was once also told that Insurance companies (and Medicare) limit PET scan coverage to 3 per life time, but I am not sure about that as based on what I have  read, it is just based on medical necessity being proven. Perhaps the level of proof increases after the third, IDK.
All the best! -Ron

Barb,
Ct scans always depress me because other than the beast there are other things I am reminded, that are not going away in my case. and, words and phrases the radiologist uses to describe some things such as "noted changes'  "new" anythings,  "degenerative" this or thats anything 'plueral" "possible ongoing inflammation" Annuerisms and masses,  I kindof know what LLoyd bridges charachter in the old funny movie Airplane meant by ' guess I picked the wrong day to quit sniffing glue", or drinking, or smoking pot and this is quite possibly the way I deal mentally with depressing situations as opposed to taking the ever increasingly popular "easy' way out,  and I am going to be like Forrest Gump on that one and say " that's all I'll say about that"
Trying my best to think about comedic or hilarious thoughts occupies my mind so depression doesn't set in too deeply because I know the beast wants me to be scared, it wants  me to worry so my body will secrete the enzymes and hormones or whatever it is necessary for it to grow and live while using my heart, brain, liver, kidneys, colon or whatever else as footstools while it kicks back and depletes and deceives my bodily resources into believing it is "one of the boys' AND I SAY NO WAY! wITH GOD'S  help we are going to turn the tables on the beast around here and we are going to use all the what-ifs, kitchen sinks, plans b.c. and d or all the way to z to throw at it and using it's own decept against it if at all possible while on this ominous journey .

Thanks Charles. It’s scary that it wasn’t there July 2nd and is there now. Guess moving up the CT date because of chest pain was a good thing. 

BC JOE
That was just about the last thing I thought I would hear that day "yes we have no bananas (Imfinzi), we have no bananas (Imfinzi) today" reminded me of the gas wars we had here in the 80's. congrats on #8 (Ohhh that number 8)
 
Barb,
here is a link to nodules
https://oregon.providence.org › Files › Nodules Brochure 2014 FINAL
As far as the question "does this mean the imfinzi isn't working" I believe a good answer would be not necessarily. Nodules 5 mm in size are quite common and  95% are non malignant. A stable original tumor doesn't mean the drug isn't working. It is stable and not growing which is really on the positive side so keep your head up but they will need to know the uptake (if any) it could also be inflammation or an infection so hang in there.

Hang in there Barb I'm rooting for you and all of us while we are on this crazy rollercoaster ride filled with prednisone, levothyroxine, antibiotics, and quite needfully, SEDATIVES . I am not a drinking man or doper but I can almost certainly garonmotee that I am just about ready to have me a few double shotters or a six pack of longnecks (ice cold) to ward off some of this anxiety and paranoid feelings of impending doom I know I subconciencely get from all this. Just went today for number 13 and was not able to receive the infusion because they didn't have any Durva due to some problem with Astra Zeneca so will take #13 next tuesday. That sure is a new one on me though. Praying for us all....

Tomm,
Thank you for your encouragement and if I may I would like to convey here what my Onc has told me today right before I got #7
He told me that he just got back from a big Oncologists pow wow and has a friend/colleague on the Pacific Coast trials teamand  that he was able to discuss a few "things" with, concerning Durvalumab, and actually Durvalumab was the subject of the convention talks. Now, The Pacific coast trials is the testing they done to gain FDA approval in Feb. of 2018 for Imfinzi, and it is still ongoing. The reason it is still ongoing is because patients are benifitting far greater and longer than stage one and two of the testing had originally suggested. Side effects are still prevalent but managing them while staying on the Durva for the whole year is KEY. The way the drug is working in my case has been that the Durva seems to "choose" one side effect at a time to really clamp down on while doing it's job on the dIseased tissue it is targeting, sort of a "side dish" if you will. The first side dish it chose was not exceptable for me because it caused a lot of pain so we backed off and took Prednisone for a week and that side dish went away and hasn't returned, thank God and knock on wood too.. Then we got back on the regimen quickly and the antibodies have chosen another "side dish" to enjoy while it has it's main meal of the tumor. For me that is the post fight Rocky Balboa look that includes a little swelling in the facial region, stuffy head and yes weight gain all the while still having staggering fatigue. I had been going through this for a month and a half and needed relief so we started Prednisone again for 4 days to see if it would help and it did. Then again back on the treaments a week later. So my theory was, since I can live with this particular side effect as long as there is no pain, no apparent permanent damage, and I can get relief at some point in time, then quickly get right back on the Durva, COOL WITH ME!   THEN my Onc said that his friend ( The one on the Pacific coast trial team) told him that he was actually prescribing Prednisone in lower dosages 5, 10 mg once a day for longer periods of time to deal with the side effects that were more "tolerable and not serious" in an ongoing manner ,and this seems to actually confirm my theory and provides a way to keep the durva "side dishing" on this particular side effect as opposed to a different , new found, and more serious one while doing it's thang on the tumor. So now I am on 10 mg. prednisone once daily until further notice all the while staying on the treatments. Whats more is there is evidence that the Prednisone does not stop the effectiveness of the Durvalumab in my case and others. so we will  see. Just stay on the Durva for the whole year that seemed to be the most important thing my Onc told me and manage the tolerable side effects with your Onc. When my Onc sent me to the infusion room after our discussion, he sat down in the treatment room and started typing profusely about our plan and discussion and I felt like a TRUE PIONEER because what we came up with just may also help someone else and he was typing like he thought so too, how cool is that? This gives me hope beyond description, WHAT A RUSH!......... Charles out...

BC JOE
That was just about the last thing I thought I would hear that day "yes we have no bananas (Imfinzi), we have no bananas (Imfinzi) today" reminded me of the gas wars we had here in the 80's. congrats on #8 (Ohhh that number 8)
 
Barb,
here is a link to nodules
https://oregon.providence.org › Files › Nodules Brochure 2014 FINAL
As far as the question "does this mean the imfinzi isn't working" I believe a good answer would be not necessarily. Nodules 5 mm in size are quite common and  95% are non malignant. A stable original tumor doesn't mean the drug isn't working. It is stable and not growing which is really on the positive side so keep your head up but they will need to know the uptake (if any) it could also be inflammation or an infection so hang in there.

Hey Tomm. I take CBD in capsules, liquid meds of any kind make me gag. They have helped my joint pain tremendously. Sleep and anxiety, not so much but I’ve always been a terrible sleeper. 
Charles-I would love a long neck or maybe 6 right now. 

Charles, I ALMOST didn't get mine yesterday. Astra Zeneca is changing the way they distribute the drug at least in my area of Canada. Spent two hours on the phone Monday and someone from the pharmacy that is no longer distributing the drug went and got one from their commercial side and took it home with him kept it in his fridge and hand delivered it to the infusion clinic. Unbelievable how helpful some people in the field are!!!!!!!!!!!!!!!!!! I will be writing a letter to his supervisor about it. Infusion #8 yesterday. Side effects are less but the shortness of breath is a concern to onco, she thinks it's from radiation. Will write about my journey when lawyer gives me the go ahead.  Thank you all for posting, it has help a lot. 

Thanks Charles. I’m rooting for you too. I sometimes feel like throwing in the towel, cash it all out, stop all the chemicals being put in me and just take to the road until I can go no more. But alas, I come back to reality, put the gloves back on and come out swinging once again.  Somebody needs to do a better inventory of their Durva stock. That seems a little unprofessional. Have a good night!

Hang in there Barb I'm rooting for you and all of us while we are on this crazy rollercoaster ride filled with prednisone, levothyroxine, antibiotics, and quite needfully, SEDATIVES . I am not a drinking man or doper but I can almost certainly garonmotee that I am just about ready to have me a few double shotters or a six pack of longnecks (ice cold) to ward off some of this anxiety and paranoid feelings of impending doom I know I subconciencely get from all this. Just went today for number 13 and was not able to receive the infusion because they didn't have any Durva due to some problem with Astra Zeneca so will take #13 next tuesday. That sure is a new one on me though. Praying for us all....

And she is a funny gal too😘