Tomm

DFK   ..Great news!!  I think you are the 1st person on this site to become NED while getting Durva, anyone else?  Enjoy your time off and thanks for sharing your great news.
DarlaK      Welcome to a great place to learn and teach, thanks for  your information on blood pressure, a good read.
My naturopath has me taking Nicotinamide riboside  for my raising blood pressure and to treat my Afib. It effects your NAD level.
 

Good Wednesday Morning to all,
#24 Infusion yesterday.....uneventful. Labs all normal. Usual annoying side effects present, tolerable and managed with my arsenal. My husband calls my arsenal of potions, my Felix the Cat bag.
I had my Neck and Chest Cat Scans two weeks ago. These scan were ordered to rule out any new or existing tumors that may have impinged on my left laryngeal nerve to cause my left vocal cord paralysis. I specifically relayed to my Oncologist and ENT docs that I did NOT want to know the results until my regularly scheduled appt., which was yesterday. I really really wanted to enjoy my Thanksgiving without my "Cancer" taking front and center stage should there be progression. My last chest scan was in May, 7 months ago.
Results:
Chest: Original Tumor no longer seen, Nodular parenchymal disease has resolved. No gross lesions are identified and no lymphadenopathy by size criteria. 
Neck: No masses or lesions. Vocal cord paralysis could be due to radiation therapy within the chest for patients known right lung neoplasm and subcarinal lymphadenopathy.
In Blessed simple terms: NED. 
Relief, joy, ecstatic gratitude does not even begin to describe how I felt sitting there in my doctors examining room, where as five minutes before, I braced myself for the worse news ever. Instead, I got the best news in this stage of the game, at the nearing end of my Durvalumab.
I inquired as to the possibility of deferring my #25 infusion until January, with the rationale of celebrating the remainder of December without any treatments. My oncologist said YES I MAY. Tears of joy streamed down my face as I hugged this very pragmatic man. I got just a wee bit of a smile from him.
Plan is to have my last two infusions in January, followed by a PETSCAN a month after my last infusion. I also dovetailed Cardiologist, Pulmonologist, Radiation Oncologist appts and Echocardiogram of my heart on the day of #26 Infusion. I followup with my ENT in 6 months. 
Oncologist said my port may be scheduled for removal pending the results of the PETSCAN.
And that my dear friends is in a nut shell, my reachable and foreseeable future, the light at the end of the tunnel, a sanguine postscript to the past 16 months.
History: Dx August 2018 NSCLC Stg 3b. Carboplatin/premetrexed x3 concurrent with 60 Gy radiation x30 over 6 weeks. Durvalumab initiated 2 weeks after last chemo.
Thank YOU all for your support.
Take Care, DFK

Hi Folks,
thanks for all the feedback on blood pressure, I guess no one  is alone here with any side effects. I also have chronic Afib but am asymptomatic for 4 years, I see my cardiologist once a year and with no other health issues  She does not give me any medication. If my blood pressure is still up next month when I see her again that may change. 
I hope all scans are clear and side effect  a memory

Hi Folks,
thanks for all the feedback on blood pressure, I guess no one  is alone here with any side effects. I also have chronic Afib but am asymptomatic for 4 years, I see my cardiologist once a year and with no other health issues  She does not give me any medication. If my blood pressure is still up next month when I see her again that may change. 
I hope all scans are clear and side effect  a memory

Hello to all, 
There is a lot of information regarding high heart rate in cancer patients after chemo and radiation.  I had mentioned this high heart rate concern in an earlier general post but not a lot of replies so I though I was the rare case but now after some research I know it is not true.  This can happen with just chemo alone. 
http://www.cancer.ca/en/cancer-information/cancer-type/childhood-cancer-information/watching-for-late-effects/heart-problems/?region=ab
I do not currently have blood pressure issues for now but after my 1st chemo I became dehydrated and all of the sudden my heart rate increased and anxiety really set in.  I was very concerned and after discussing this issue with my ONC I had a heart Echo done A+ heart is healthy.  Then after completing my 2nd infusion just two weeks ago Cisplatin/Paclitaxel now I have a higher heart rate at rest 80's - 90's and 120's after exertion.  I feel that my ONC thinks this is all from anxiety but I now know after reading this may not be true... 
We all have different stories but its is great to know we are all not alone in this 
Darla

Tomm, 
Hope you are doing well and the issue with the increased blood pressure becomes a non-issue. When I first learned a little over a year ago now that I would be placed on Durvalumab I also read just about everything I could on the "cardiac toxicity" of the Checkpoint Inhibitors. As I had a heart attack years before and had 5 stents placed, and was on all kinds of heart meds, including several for high blood pressure, I was naturally extremely concerned. On top of it, I was on blood thinners and anti-coagulants as I had went into chronic a-fib, so the first thing I did was consult directly with my cardiologist. He also consulted with his associated electrophysiologist cardiologist and both agreed that there was not enough information available to suggest not taking the Durvalumab. After a few months, I had a EKG and checkup with the cardiologist, who found no new concerns, and I was told just to monitor my heart rate and BP and to come back next year. When I said (somewhat jokingly) that I would if I was still alive, he said that I better be alive or he would kick my *ss. I don't know for sure, but perhaps my heart meds counteracted or minimized any adverse cardiac problems with the Durvalumab. I know my BP never increased, and in fact actually decreased to normal levels. Of course now being on a targeted therapy TKI "Alectivnib" since I was found to be PDL-1 Negative and ALK+, I switched over to having too slow of heart rate with too low BP at times, so my cardiologist cut my Metoprolol dose in half which seems to have helped. 
I have my first CT next Monday, with the results due on Wednesday, of my first scan after starting on the Targeted Therapy a little over 5 weeks ago. Hoping for the best. 
I just wanted to stop in to say hi to the Durva Club members and to say that I am still lurking around.
-Ron

Thanks Tomm for info.
I agree completely with the article and pushed my Oncologist (gently nudged) for a Cardiology consult upon completion of my chemo/radiation. I was aware of the risks to my heart with chemo and radiation and wanted to be evaluated by a Cardiologist while I was still in fairly good health. Durvalumab was not on my radar for cardiac adverse side effects.
Per classic textbook, 3 months after chemo/radiation, due to radiation pnemonitis and scarring, I developed a rapid heart rate to compensate for my poor oxygenation. I was started on a small dose of Metoprolol, a beta blocker, while my body adjusted to the "new" me. And yes, with my rapid pulse, my BP was higher. All of that is resolved now, 9 months later. My Cardiologist says my heart is just fine and dandy but he sees me every 6 months. I feel secure in knowing should I have any future concerns, he has some history of what my treatments were and how I have been responding to them. 
Thanks for sharing.....Take Care, DFK
 

Sillycat    good to hear your doing good with side effects, I don't think Durvalumab is given to you for as a maintenance drug, it is given with curative intent and you are #8 infusions on the way.
DFK  .. I just did some research on my rising blood pressure and found this. 
Heart Problems: Investigating the Cardiac Side Effects of Cancer Treatments
https://www.cancer.gov/news-events/cancer-currents-blog/2018/cancer-treatment-heart-side-effects
My OC is watching this and said he may address it soon if things don't improve. 
take care all...
.

Tomm and Sillycat,
Good going on the uneventful infusions. I'm totally down for boring and a tamping of annoying side effects. 
I suppose a change in your Blood Pressure whether high or low is something you probably want to monitor and bring to the attention of your health care team should it continue to be out of your norm. I know this is plain ole common sense but I also know that if I don't bring up the simplest changes to my MD, it will not be addressed. They're monitoring for catastrophes and I'm paying attention to subtle nuances. 
I'm no doctor nor expert on Durvalumab but I don't recall any mention of primary cardiac side effects in my readings. I do know that Kidney function and Hormonal Gland changes can affect your Blood Pressure and Durvalumab certainly does have the potential for both Kidney and Hormonal side effects. So yes, I suppose secondary and tertiary high BP's could be a possible Durvalumab side effect. As they say in the biz, monitor for a consistent trend.
Thanksgiving was bountiful, blessed to have most of my immediate family living close by.
Take Care, DFK

Hey Tomm,
I had my 8th infusion on Monday, my Oncologist said I'm doing good. Most of her patients on Durvalumab have not been able to handle the treatment so, since I'm just getting it as a maintenance drug, we will continue as long as I am doing good. 
She never says stable, I guess  because my tumor George is still there lurking at 9mm. My side effects are pretty stable now tho, thank goodness!
Thanksgiving was nice 😃 But other than that life goes on Take care

infusion #17 yesterday, still boring with all blood work in normal range, no side effects. My blood pressure has been going up for a few weeks, is this a side effect?..anyone else? 
 
hope everyone had a good turkey or?

I'm sorry to read about everyone's bad side effects. 
infusion #16 yesterday. Still boring.  All blood work in normal range. No side effects, no weight gain. I take 1/2 gram of CBD oil at night (not from Hemp). I asked my OC if I should expect side effects as I get more infusions and he said they come around infusion 4-6 and then people get treated and their body starts to adjust.  Some people take Diazepam -Valium everyday to help with anxiety. 
enjoy the season

Good Wednesday to all.
I am taking a page from Tomm's playbook, Infusion #23 completed yesterday....Uneventful past two weeks, boring with normal labs and no new challenges. YES!
Great news on Vocal cord front.....after five days of not talking, I broke loose yesterday and I have my normal voice back. No squeaks, no pitchiness, no raspy breathy or Minnie Mouse voice. I can talk. I am a little hoarse (temporarily expected) from talking but it feels great to be able to communicate without miming or needing a writing tablet.
Had CatScans today of chest and neck.....Oncologist said to e-mail him tomorrow for results or I can call him. My next appt is in 2 weeks and I told him I'll wait for the results then. For some odd reason, I just want the next two weeks to be drama free. If results are NED, fantastic, me knowing tomorrow or in two weeks won't change that. If there are concerns on my CatScans, I'd rather enjoy my Thanksgiving and find out later what the concerns may be. 
Happy Gobble Gobble Day to all, 

 
 
 

I'm sorry to read about everyone's bad side effects. 
infusion #16 yesterday. Still boring.  All blood work in normal range. No side effects, no weight gain. I take 1/2 gram of CBD oil at night (not from Hemp). I asked my OC if I should expect side effects as I get more infusions and he said they come around infusion 4-6 and then people get treated and their body starts to adjust.  Some people take Diazepam -Valium everyday to help with anxiety. 
enjoy the season

So glad that you have positive results with Durvalumab.  Wow!!! Keep on keeping on! Kate7617

Tomm
Great news.....keep up the boring. I too have had it pretty easy (comparatively) with minimum side effects and symptoms and am grateful. But I think if you were to ask my oncologist, he would vehemently disagree and might call me the biggest whiner he's ever met. Oh well, if the shoe fits......
Sillycat1957
Good words. I don't think you expressed a single thought that hasn't run through, or more accurately, torpedoed thru our minds. Tis what it is.
I have a little Gratitude shelf at my bedside that is filled with miniature  knickknacks that some of my fav people and family have gifted to me thru the years. My 3 grandkids are represented by MY LITTLE PONIES (Their choosing); Princess Luna, Princess Celestia and Rainbow Dash and I have painted rocks and beach glass and crystals and agate stones and Mario Helicopter and Luigi Ice Flower, Three Stooges Minatures and more.... just a whole hodgepodge of fond silly memories of when these tokens were given to me. And every night, and every morning I look at my treasures and I say a prayer of gratitude for another beautiful and blessed day. I say thank you for all the love, prayers and blessings that I receive. It does lift my spirits and gives me strength to (as Tom would say) stay the course.
Kate7617
You are in my prayers......please reach out and let us know how you are doing and what course if any, you are taking. We all care. Look at the dialogue you provoked ❤️
Take Care All, DFK
 
P.S-Vocal Cord surgery went seamlessly smooth yesterday....thanks to my guardian angels, spiritual and human. Just taking care of this after 6 months of waiting and fretting and worrying  has lifted my spirits and actually lowered my stress levels considerably, which in turn has tamped down my chest pains, my throat pains and headaches.....Dear, dear, stress is a horrible victor.
I am on 5 days of voice rest, absolutely no talking....WHAT!
I will give a full report after my postop check as well as Neck and Chest CatScans to be done on 11/26/19 to check as to  why left laryngeal nerve was impinged. Progression is the worse case scenario, or could be a simple nodule, or maybe no determinable reason at all. For some strange reason, I am okay with it all. How apropro that Thanksgiving is right around the bend. I remain optimistic and thankful.

I'm sorry to read about everyone's bad side effects. 
infusion #16 yesterday. Still boring.  All blood work in normal range. No side effects, no weight gain. I take 1/2 gram of CBD oil at night (not from Hemp). I asked my OC if I should expect side effects as I get more infusions and he said they come around infusion 4-6 and then people get treated and their body starts to adjust.  Some people take Diazepam -Valium everyday to help with anxiety. 
enjoy the season

I'm sorry to read about everyone's bad side effects. 
infusion #16 yesterday. Still boring.  All blood work in normal range. No side effects, no weight gain. I take 1/2 gram of CBD oil at night (not from Hemp). I asked my OC if I should expect side effects as I get more infusions and he said they come around infusion 4-6 and then people get treated and their body starts to adjust.  Some people take Diazepam -Valium everyday to help with anxiety. 
enjoy the season

I'm sorry to read about everyone's bad side effects. 
infusion #16 yesterday. Still boring.  All blood work in normal range. No side effects, no weight gain. I take 1/2 gram of CBD oil at night (not from Hemp). I asked my OC if I should expect side effects as I get more infusions and he said they come around infusion 4-6 and then people get treated and their body starts to adjust.  Some people take Diazepam -Valium everyday to help with anxiety. 
enjoy the season

I'm sorry to read about everyone's bad side effects. 
infusion #16 yesterday. Still boring.  All blood work in normal range. No side effects, no weight gain. I take 1/2 gram of CBD oil at night (not from Hemp). I asked my OC if I should expect side effects as I get more infusions and he said they come around infusion 4-6 and then people get treated and their body starts to adjust.  Some people take Diazepam -Valium everyday to help with anxiety. 
enjoy the season

Kate7617.
One thing about this Durvalumab is it aint for everybody. We all have our realities on it and this can be attested to throughout the pages of this forum. Being on Durvalumab has put me in closer touch with 3 realities: Reality, Stark Reality, and Surreality. The first two ,"Reality" and "Stark Reality" are also evident on this forum and are used by some as the "drive" or "fight" to endure this side effect filled, perilous journey of Durvalumab because it does REEK, and that is putting it nicely. "Surreality" is what I use for my " Drive" to fight harder in this battle and I will illustrate here (with pictures) what I mean. In my past posts I have been known to use phrases like the beast, slay the beast, slay the dragon, and others with a seemingly militaristic fanaticism that could appear to be based in fantasy, insanity, or general kookism but I'd like to tell you this story because it did help me. Right about the time of infusion #5, I was feeling the exact same as you UGH! At around #7 or #8 I got a CT scan that showed remarkable shrinkage and progress so I posted the pictures on page 15 The top picture is of my tumor before treatment and the bottom one is of the tumor at the time of the cat. the before picture put me in closer touch with reality and stark reality but the bottom picture put me all up in surreality no matter how good the news really was. I taught myself how to read a ct/pet scan early because I seemingly like to see and measure PROGRESS and photograph for documentation the differences. Here's where the beast and dragon come in. I snapshot 3 angles - frontal, side, and from bottom up on my scans to determine the actual mass of my tumor  and I use these three angles at their largest measurements to do this. The one on page 15 is the frontal at it's largest with measurements superimposed.  The progress is evident by comparison but in the bottom image there is a ghastly image present. My tumor was a demonic face looking back at me from a side view, complete with pointed nose, eye, elongated head and a sinister toothy grin. Normally I wouldn't have been so shocked by this but the other two views I snap shotted , at their largest,  also revealed non human images complete with said features all evil but different, and all aware of my presence and the fact I know they still exist. One's features "looks" surprised or startled, another looks jovial and aloof, and the one on page 15, well. go see for yourself.  This propelled me into a "world" of Surreality which I have never known, knowing that my tumor could also be an evil 3 headed beast whose symbiotic nature and intent it is to end me. This is when I escalated the hatred for the "beast' mind body and soul and vowed that I would crawl up to death's door fighting and killing it .but by no means would walk through that door without the best fight I could possibly give. I am proud to say that the most recent PET/CT scans reveal what the Durvalumab and GOD is doing to these "beasts". The shapes somewhat remain but smaller but are mostly inflammation and scar tissue. The faces and the "smirks' gone. The beast is dying a horrible death and I am still being inundated with side effects at , which next infusion will be #18 and I will do the Durvalumab shuffle all the way into that infusion room and throw my stubborn veined hand up for a nurse to dig around in my flesh until blood registers and begin my next "Dragonslayer" if you will. If I get the opportunity to pinpoint "if it stops working" well that's another beast. I do hope I don't get executed for heresy by some secret or non secret society because of this post, or get comitted to my nearest state asylum. One of my favorite songs is by an 80's group named Triumph and they are from Canada, just their name invokes victory and so does their song "Fight the good fight" and here are some of the words      Fight the good fight every moment, every minute everyday,  Fight the good fight every moment, make it worth the price you pay. Every moment of your lifetime, every minute everyday,  fight the good fight every moment, in your lovely way. AND DEATH TO THE BEAST!

Bard ..  Boring is Good!!

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 😸

Bard ..  Boring is Good!!

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