Charles

also a good update here the prednisone seems to be working it's wonders as the side effects are subsiding pretty nicely. Eye thing all but gone , abilities (physical, mental) seem to be improving, endurance improving, energy level coming back and lasting longer, and the overall feeling of "well being" returning with new creative thoughts emerging, this I thank God for. Last night, as my wife and I were having a discussion, I made a funny remark and we just howled and howled, complete with tears at 2 AM in the morning. I, full of energy, being a smoker for 40 yrs plus, and also having COPD, was once again able to laugh uncontrollably, with full breath without a coughing attack, which is something I have not been able to do in over a decade so I realized that, like Tom Galli described it above, This BEAST, and COPD had robbed me of who I was and I became overwhelmingly emotional and my wife and I cried and gave thanks to God and these treatments. I am scheduled for number nine on Tuesday with complete bloodwork and a visit with my Onc but do not know if I will be tapered off the Prednisone enough for the treatment but will be ready for treatment whenever I am, feeling better and soooooo greatful, thank you all......Charles

Jane Lee, Magnificent news !!!!

Hey Kleo I'd try a hit of that Gerflooberglobbin over here but I'm still pixellating on the Prednisone, it sounds a little German to me though, somethin like Der Gooberflobbin is akickin se poopinhockin outen mein poopinhopper, but in all honesty and seriousness am sorry to hear about the pain with the new treatments, seems if it aint one tham dang it's another right?

Well Jane, anytime I can be of any assistance please ask and I will try to help...............Charles

Hello Janie, I fully believe the durva is working for me also as I have jpegs to show tumor shrinkage beyond the range of all the radiation and chemo treatments I underwent up to December of last year, of which I only had inflammation side effects from. I feel and have felt the same way you do about sticking to the Durva no matter what but I'm afraid that I myself don't have much of a choice with being delayed, hopefully temporarily, from the treatments because of the severity level of all the side effects I am having , as there are guidelines laid out in each country for all those depending on what country you are in. All I can do at this point is agree or disagree with it. Sure, I just hated to be witheld from treatments for awhile but I am still scheduled to take another one in 2 weeks depending on blood level counts, severity level of any remaining side effects, and if I get a successful taper down on the prednisone to an acceptable level to get another treatment, I will have to wait and see but I do fully intend to resume treatments asap. Thanks Janie........Charles

Thank you all for your kind words and I will stay the course if the course remains stayable. Right now, as far as I know, the maximum dose of prednisone is 1mg per kg. of body weight per day which I am on, so for me, that amounts to five 20 mg. tablets per day for 3 days, then four 20mg tabs per day for 3 days, then three 20 mg. tabs per day for 6 days, then 2 tabs for seven days, then 1/2 tab daily from then on. I am on day three of the five tabs and so far have a little more energy and a little less fatigue so have been able today to do a little bit more without having to collapse into a 6 hour nap to recharge for a short time, so that is good. Eye and other thangs still going on though so rooting for no permanent damage anywhere, time will tell. As far as the prednisone stopping the Imfinzi from doing what is was "designed" to do, I don't think it can, just slow it down according to dosage and time given the prednisone. will talk more later... thanx again everyone, Charles

hey Barb you're right but it is what it is though right? Time has come for an assessment because toxicity has come into play and we must deal with that before trudging on. I am already a type 2 diabetic and I get dizzy when glucose levels are too low (under 90) or as long as they don't stay too high (over 200) for too long. The Imfinzi did affect levels and the Prednisone really makes them go up so I am monitoring more closely also, but onward we go. Will continue to post and monitor here though. Charles.

hey everybody, poster child for the side effect committee here, had to throw the towel in on imfinzi for about a month or so on tuesday, Onc was going to take me off permanently but I talked him out of it but I do agree I need a "halftime" break in all these s.e.'s. Have gained 30 lbs. since on, have experienced long lasting eye and vision changes with swelling for a couple months , weakness to the point of quick muscular exacerbation with loss of dexterity in hands with difficulty mouthing words correctly , debilitating fatigue, and liver enzyme counts way up threatening liver damage. went in for liver function bloodwork last week and levels came down a little but still up double what they were before. So far have had to have 3 unscheduled appointments and tests, 3 different lower dose prednisone scrips, 1 e.r. visit with abdominal ct scan, and 1 unscheduled full jaw to thigh ct scan by Onc and all this by number 9! Tme for some relief huh? YOU BETCHA! So now am on the max dosage of Prednisone (1mg per kg body weight per day with tapering for several weeks) treatments still scheduled but witheld and a brain M.R.I. scheduled. I asked Onc what the " antidote" for Imfinzi was just in case but got no clear cut answer but the dosage of prednisone I am now on for immunosuppression and some medication that sounded like bamaculahockie. Am hoping the prednisone restores me back to 'normality" rapidly and hope for no long term or permanent damage. This is the old " wrench-in-the-works" in plans for me but when I started this I knew the risks and set goals which I believe, with God's help, the medication was working on the cancer because lungs are better than before but that's all that is. I will walk up to the "final door' on this treatment with what is left of the cancer in tow but I will not knock on it willingly, and yay though I walk through the valley of shadow of death, I will fear NO evil, But I will recognize it! And that about sums it up, yep

Barb, I reported the eye thing to my primary care dr. and my onc. Primary gave me some Zyrtec (otc) to see if it was allergies but that didn't help, I've never had allergies before. after several weeks of having the swollen eyelid thing Onc said he thinks it is Durva related for me so he put me on 10 mg. Prednisone daily without witholding treatments. I set an eye appointment to be looked at for signs of abnormalities or problems inside the eye and am waiting to go to that. I would make an appt. with an eye doctor to see if there are underlying problems though because eye problems are said to be rare with Durva but can be serious.

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...

Barb, Pet/ct scans I guess every 90 days also, last one was in march so I believe next month is the next one of those. Tuesday was a lower radiation ct with contrast and I don't really know how often these are scheduled unless they just give those as they think they are necessesary or what. I have never seen anyone offer any actual positive results (not saying they haven't or don't) about durvalumab per se, only all these crazy side effects to include the ones I am having to the point of I don't know which ones are me and which ones are the durva. I have proof positive in JPEG images that it is actually working from March to May which would be the durva working but this is Robert McCauley's thread and I din't want to hijack it by "comparing colonoscopies" (so to speak) by posting a bunch of pictures of my innards, seeings how this is a durvalumab blog though, I did feel it critically imperative for someone to say or show some kind of positive evidence that the drug is really working for someone to shrink the tumors, and I am happy to be able to be the one to do that, because up until today, hope is all I had in a river of side effects and questions. Now on to the next battle in this war we are fighting! I will offer hope to anyone I can when possible.....

Michelle I get to see him for #7 tomorrow but up to this point he says I'm doing well and keep doing what I'm doing, when I do get to see him. No changes to the plan as of yet but I am going to discuss some "things" with him or his assistant tomorrow. hopefully it doesn't take much more treatment for this tumor to lose all it's shape altogether, the May 17th image above is the absolute largest that is left of it from any angle or series of angles. I do want it gone though so will probably have to wait and see what next month's pet scan has to show, so until then my eyelids and knuckles will continue to drag the ground and I will keep doing the Durvalumab shuffle wherever I go, thanx Michelle......Charles

I have the results from my CT scan on friday, The radiologist said COMPARISON: PET/CT 03/04/2019. FINDINGS: Chest: The large area of masslike consolidation involving the right middle lobe and the base of the right upper lobe, which on prior study measured about 8.2 x 6.5 cm overall, currently measures about 8.0 x 3.8 cm. There is very minimal trace right pleural effusion, which has diminished in volume since the prior study. A small pericardial effusion is seen, new. The pretracheal lymph node, which on prior study measured 1.0 x 1.2 cm, currently measures about 0.8 x 0.9 cm. There is no new pathologic lymphadenopathy. The included upper abdomen is unremarkable. Bone windows show moderate degenerative changes. The radiologist doesn't seem too overly gracious with his measurements but I assure you that looking and comparing the scans from friday and the pet/ct I had in March, the differences are dramatic and almost unbelieveable, hooray! as can be seen, there is a negative, but compared to all the amazing positives (Imfinzi shrinkage) I am thanking the Lord above, I will definately take it fore sure. The attachments I have included is what I had in August of 2018 and what I have now, and positive signs the Durvaumab is working

Thanx Barb and Tomm, will post again when I read the report and get #7, later

Just got my chest CT Scan and disk and popped the disk in the old PC and it does appear that we do have pretty good shrinkage, just how much I don't know exactly but it is definately smaller in volume and shape. will know more when I get the report from the radiologist as to the particulars but the thing is ragged and tattered looking and smaller .This to me makes taking the Durvalumab with side effects worth it at this time. Now I just hope no new mets or anything or plueral effusions but won't know for sure until after the reports but lungs actually feel better than they have in a couple years. So hallejuhah for now

Tomm nothing out of the ordinary as far as chemoradiation side efects, thanx Tomm.....

was going to post this yesterday but forgot, went for #7 on tuesday and infusion was postponed for a week, the post fight Rocky Balboa look with the echoey head thing been happening for a month and a half and Onc and I agreed to try prednisone 20's (2nd time on Imfinzi, different S.E.) for a few days to see if I could get some relief before we get back at it. Also go for chest ct scan with contrast friday, THEN #7 next Tues. Hoping and praying for the best, Good luck Barb on #2

Barb, be ever vigilant to all inflammation problems at first, coughing and fatigue for me worsens then subsides, worsens then subsides etc. but always seem to be there and get worse for me during stress, and activities especially on bad lung days or days I believe to be my side effect hit days after infusions. Also, if someone is around you who will do it and you can trust, give them instructions on what to do if a side effect hits that completely debilitates you (GOD FORBID!) 911, driving you to the E.R. or assistance with things like dizziness, light headeness and preparing meals with plenty of vegetables and fruits, but very much get well aquainted with all the known side effects, inflammation that debilitates you is not minor, if you are in pain for more than a couple days go get checked out . If you have a computer or phone filing system, start a file and entitle it something like "Durvalumab stuff" then google Durvalumab side effects and download information, pdf's and all the information you may find that is helpful to make you feel better about the knowledge you gain about this drug and yourself. Get to know this drug and it's possible side effects because it will get to know you if it works, And most of all PRAY, then take a deep breath and bask in the well being of knowing and believing that you are doing all you can do to help the drug find it's target and do it's job. This is basically how I do it and it has worked for me, a prepared and well armed soldier wins more battles, Hope I haven't insulted your intelligence or anything but these are the things I wish my Onc. and Primary care provider would have told me after my first infusion. Congrats on #1 and keep your chin up fellow Durvy........Charles

Barb, Everybody seems different on this drug. one will get one side effect, another will not. One will get several at once, others will get none. I get my infusions on Tuesdays and side effects usually hit on Saturdays or Sundays so I just plan to stay alert and just chill on those days. I ALWAYS keep Ibuprofen handy though and that really helps "minor'" inflammation caused by the drug for me. Go back through some of the links provided by others in this forum on past pages and learn which ones are the ones to REALLY be concerned about seeking help for asap. Fatigue in various levels, coughing, joint and some muscle discomfort are ones that come and go for me , and again, Ibuprofen to the rescue. Monitor yourself and take notes if you need to but do read up because everybody is different. I hope this helps..... Charles

Barb, I wish you a full recovery.

Barb, Aint that just a kick in the dang head? If I might ask, what mg is the prednisone they have you on? You didn't mention them saying anything about a "taper off" of the prednisone or anything so I would guess 10 mg?

Barb, Sorry to hear about the pneumonitis. Charles

Good luck Barb and Tomm!

Barb, I hope unrelated too, thanx

Barb, Couldn't say for sure, isn't one of those well known side effects of imfinzi as far as I can tell. Ibuprofen brings the swelling down a lot so this denotes Inflammation of the eyelids that resembles an allergy. I will probably set an eye appt. to get looked at to find out if there is an effusion or anything serious going on. No pain though and appears to be only eyelid and not eyeball protrusion but I guess better safe than sorry........Charles