DFK

DFK-
A big KC Whoo hoo for nearing the finish line of Duva as NED.  Outstanding!  

Yay!!! 

DFK,
Simply superb news!
Stay the course. 
Tom

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.
 

DFK - Great news!!!!!!!!!!!!

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

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

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

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

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

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

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

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 Ron,
Nice to hear from you! Glad to hear you are still lurking around! I still consider myself a Durvalumab "Newbie"  only had 8 infusion so far. I have to say with the addition of the 5 mg of daily steroids, and my Neurologist adding Gabapentin to my mix of drugs I'm on, my side effects are down to quite a manageable level. My goal is to completely do away with the oxycodone for pain, this Sunday I will cut my 5mg pill in 1/2  and see how that works out.
With all the talk of heart issues, I think I may make an appointment with cardiologist like DFK did to establish a baseline. Both my parents had major cardiac issues and passed away at an early age because of them.
I hope your being on the TKI is doing right by you, I hear so many wonderful things about how people respond favorably to Alcencensa (alectinib) it must be nice to take a pill instead of having to have infusions 😃 I wish you and I and all of us here didn't have to take anything! But we all have this stupid nasty, blasted, disease we didn't ask for, for F**ks sake! But we got, and we are lucky we have the drugs available to us now, that just a few years ago were not. My daughters' father, my ex died from NSCLC in 2000. He probably would have had a better chance at survival, so I'm grateful 🙏
Anyway, enough ramblings, I will pray for a great scan on Monday and keep busy til Wednesday. Please keep us posted on your progress!
Be well and Take care,
Roseann

Good Saturday morning Ron,
Nice to hear from you and thanks for chiming in on your personal experience with "Cardiac" concerns and follow thru. I truly believe our banter with our experiences are helping others know they are not alone on this journey and provide some guidance for the uninitiated.
There are a few of us here that got CTs recently and are awaiting results. Couldn't of said it better.....hoping for the best.
Take Care, DFK
 

Good Saturday morning Ron,
Nice to hear from you and thanks for chiming in on your personal experience with "Cardiac" concerns and follow thru. I truly believe our banter with our experiences are helping others know they are not alone on this journey and provide some guidance for the uninitiated.
There are a few of us here that got CTs recently and are awaiting results. Couldn't of said it better.....hoping for the best.
Take Care, DFK
 

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

Tomm,  sorry I didn't respond about your blood pressure. I did however, read that article before. A gentlemen on the Inspire website posted quite awhile ago, about his father who had only 1 (one) infusion of Opdivo (Nivolumab) immunotherapy died because of an adverse reaction to his heart, he wasn't bad mouthing the drug, at all, he claimed he was an MD he just wanted people to be aware of the potential side effects of immunotherapy. I read it before I started Durvalumab, um, scared the crap out of me! I still don't like the fact that these drugs can cure us but kill or maim us later on down the road maybe Geez Louise! Huh! Oh and once when I had my vitals checked my BP was 155/90 I was so nervous I thought I was going to drop dead right then and there for sure! My BP has never gone higher than 130/80 ever! The nurse got so upset by the way I reacted LOL! He told me to relax take some deep breaths and some other things it finally came down after about 20 minutes. I did not want to have to take another pill. So far I've been ok. I hope your BP levels out.
DFK, my Oncologist is sort of like the mad professor, she says I am in a curative state Yay! But she does consider Durva a maintenance drug. I say if it cures me of this monster I'm good!
Here to fighting the good fight!
 

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
 

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?

Kate7617
Thank you for your updates......
Stage 3b can be such a sticky wicket. I too am 3b and when I did my research and found out Durvalumab %’s for curative goal, I was a little disappointed until my Radiologist Oncologist told me that before Durvalumab, and you had no mutation biomarkers, you had nothing except CRT.  She then proceeded to tell me that she has every hope in the world that it would work for me. My oncologist, though very quiet, has expressed the same sentiment, "We are working towards curative".
End result may be true or not but it was extremely encouraging and allowed me to move forward despite some of my irritations with Durvalumab. I will be getting #23 this Tuesday. 
I pray and hope that your second opinion coming up allows answers to your questions and provides you with enough information to best address your concerns and move forward with a treatment plan that best serves you. When healthcare providers throw up barriers to communication and empathy, just keep plugging away. Seems so counterproductive and an entire waste of energy with all that we're contending with but it is our life and we can and will rise above that.
Also, you had mentioned that you sent your medical records to MD Anderson. Did anything become of that?
Take Care Kate, DFK