DFK

Great news! NED is on our side, keep on keeping on and enjoy your loved ones daily! Kate

Thanks DFK 
your optimism is contagious. Let’s just replace Covid19 with your contagion 
Grahame

Hi, just catching up on posts, I worked in the Insurance field, and yes they will deny deny deny, you just have to keep after them like a barking dog! Unfortunately =( until you get the right person and you will get approved. Rule of thumb was deny 3 times before approval, made no sense then, but that's how they did it. I had a headache everyday, getting people approved in the mental health field. I'm sure it's the same in the medical field as well.

Thanks Tom. CT next week, fingers crossed. 

Barb - congrats on NED! Who knew scar tissue would be something to celebrate! lol

Barb, Congrats!! NED!!! Yay, that is WONDERFUL 😃
I'm still trudging along, had infusion 13 and 14. # 14 port was clogged again! that makes 3 times now! This time after pumping and some heparin half a bag of saline drip, it opened up, thank gawd! It freaks me out! Other than that, I'm glad to see all the NED post flying around here. That's awesome! 
My next CT/Scan is going to be scheduled in May so I can only hope my 9mm tumor is gone 😃
Michelle, no one wants to hear about Naltrexone, I see my MD again this Wednesday, I will ask again. I love when my team of Doctors just say we have other things to worry about right now WTF! 
Any who, Have a Happy ST Patricks' Day everyone!
Roseann

Hi everyone, Good Tuesday,
Good dialogue on PetScans, CatScans and insurance barriers. For what it's worth, my Oncologist did a total of 4 CatScans during diagnosis, chemo radiation and Durvalumab over the course of 17 months. Got a Pet Scan a month after my completion of Durvalumab. When I asked about MD preference for Cat scans versus Pet Scans, he said CatScans provide a more detailed cross section of tissues and organs. If I'm not mistaken my last PETSCAN was a combination Pet and CT done simultaneously. This was different at diagnosis where I had a CatScan to confirm the tumor, followed by a Pet Scan to confirm biological activity.
Barb-I was told I was NED when there was nothing on my CatScan except scar tissue/fibrosis where once I had a large mass. I'm guessing those radiologists can differentiate. Hopefully, you'll get the answers to your questions when you have a one on one talk with your MD. Then you can tell us their take on it all.  I remember my ENT wanted a PET Scan to rule out tumors in my neck and my Oncologist said nope, a CatScan would be more definitive. 
Just of note and an FYI
My community music group frequently plays for hospitals, nursing homes, assisted living facilities etc. Today, a memo came down from the County to all healthcare facilities, "No more community outreach visits". This is in response to the COVID-19. Of course, they forgot to tell our group and we showed up to perform anyway.....all went well and we didn't get kicked off the property!
Take Care, DFK
I used to be indecisive. Now I'm not sure.

Hey Barb, 
Wallow in the NED news....so gawd darn awesome. Confirmed, confirmed, confirmed! Did I mention confirmed? Have an uneventful #22, and continue walking on sunshine.
Take Care, DFK
 


 

Good Sunday Morning to all,
A philosophical post this morn......a little sadness, a little spiritual joy, intermingled with this journey called life. Allow me this time, with words, to express what is on my mind. The Durvies know me, so it is here where I will post and release the "Cracken" of my thoughts. It's also dedicated to Rower Michelle and Eagle 13.....read on. 
Recently, my bff of some 50+ years lost his partner Bill of 35 years, to cancer. They were gay and during the turbulent years of the 80's with HIV, panic and fear made them hide their sexuality, their coupling. It was a difficult time, the 1980's, as beautiful young men and women were dying in droves and there seemed to be no end or resolution to the HIV virus and crisis.
At the time, I was doing home health nursing in Hawaii. It was not unusual for gay couples to bring their entourage of friends with one dying friend to celebrate their last days in paradise. I was the nurse who went out to their luxurious vacation homes or condominiums on the beach, infused their "HIV" medications and gave them new IV packs of morphine to control their pain. 
I was tasked with visiting my HIV patients on an 8am-4pm schedule. Receiving the HIV infusions usually ruined the rest of the day for my patients so there were times when I broke the rules and would schedule a visit at night to allow my patients a "free" day of vacationing. Of course these night time visits included some blackmail as in providing me with a delicious home cooked meal or a nice new haircut and do, followed by a mai tai or two. Despite all this sadness around dying, you try to find some light and humanity.
Bill and my friend were not high risk and they weathered the HIV storm and lived a good life until Bill's diagnosis of Cancer. He passed within 18 months of diagnosis. Those 18 months were pure hell for my friend the caregiver and Bill, the patient. Bill was in treatment, suffered thru numerous hospitalizations and indignities. In came the hospital bed and wheelchair and daily dressing changes and doctor visits and social workers pushing to Hospice and hurried doctors. A world turned upside down. 
I asked my friend how I could help and he denied needing any help, he was taking care of business. His emotional grief was held at bay In lieu of pragmatic necessities and I honored his request. 
Last night I learned of Opal's  (our fellow Durvie) husbands passing last week Sunday. His body had succumbed after four years of living with Pancreatic Cancer. It got me thinking (as you can tell) about a myriad of things. Most of all, I thought about how much Opal has to contend with and it made me sad. Like the sadness I felt caring for so many HIV patients and my friend who cared for Bill. You are able to help the patient as their needs are direct and most times, solvable. But my feeling of helplessness and empathy to help those that are left behind stay with me, ever present.
We all know how much processing has to take place, the utter shock, the waves of grief, a new life to navigate. Somehow, our friends and family navigate thru all the challenges and like Cancer, our lives are never quite the same. And like cancer, it's a solo journey of navigating thru OUR uncharted waters. 
Thank you Opal for trusting me with your heart, your feelings and inviting me into your canoe. You will do almost all of the paddling alone,  but you know you have a team that will be there as you steer, guiding and supporting you on your new journey. You are loved.
Let me also relay that Opal's last scan was reported as stable, next check in 3 months.
Take Care, DFK

 
 

Hi Polly,
Nice to hear from you again and congratulations on receiving your first dose and knowing that so far, so good, your nodules are heading in the right direction....to nothingness. And that is an awesome thing. Please know how fortuitous it is to see that kind of shrinkage in your nodules. 
I always kept a journal of sorts, brevity kept it going since I was diagnosed in August of 2018. I would do little notes daily as in, a little short of breath going up stairs, or a good day today, able to do all housework, or bad headache today. It helped me to track for any consistencies and changes in my status. 
Talk to your MD about your shortness of breath if it is consistent. You may be having a response from the chemo and radiation or a reaction to the Durvalumab. Or it may be intermittent physiological response depending on your level of activity, anxiety if present or a myraid of other factors in the "who knows why" category. To me the key is to monitor when it happens and trend for consistencies. When you do talk with the doctor, you'll have some information that he or she can use to make a determination of how to help you.
Again congrats, you've made it to Durvalumab and everyday is bringing you closer to our common goal of nodule nothingness
Take Care, Blessings, DFK
 

Tomm-Excellent on #23. The countdown is on and your finish line is just around the corner. Opal and I have crossed the finish line with NED.....and speaking for myself.....the fatigue is gone and the wonkyness of the Durvalumab coursing thru my veins are gone. My stamina and endurance have improved and I find it mentally and emotionally refreshing to not have to plan another visit for another infusion. In a lot of ways, I feel I have gained back the normality in my life.
Now with the Covid-19 on our heels, another annoyance to contend with but being NED makes it just that, another annoyance like a pesky mosquito. Due diligence will get us thru this "crisis", the same due diligence, intelligence and fortitude that got us thru Durvalumab. 
Today I officially cancelled our trip to the Pacific Northwest. We did good as no losses were incurred except for a teeny tiny smidgen of disappointment for our celebratory end of treatment indulgence. No biggie, there will be time later for celebration.
Grahame-You are on your way, though at the beginning of your journey. I hope that those of us who have traveled your road provides you with inspiration to keep putting one foot in front of the other, and to use this forum to support you, educate you and get you to the finish line. With your background, you are fortunate to have a huge knowledge base to address your symptoms. I think Tomm said it best, a lot of the annoyances (side effects) was and is part of the price in (hopefully) extending our overall survival and halting progression. Hope is omnipresent.
Take Care, Blessings, DFK
Did you hear about the man who fell in an upholstery factory? He is said to be fully recovered.

Hey Barb, 
Wallow in the NED news....so gawd darn awesome. Confirmed, confirmed, confirmed! Did I mention confirmed? Have an uneventful #22, and continue walking on sunshine.
Take Care, DFK
 


 

Tomm-Excellent on #23. The countdown is on and your finish line is just around the corner. Opal and I have crossed the finish line with NED.....and speaking for myself.....the fatigue is gone and the wonkyness of the Durvalumab coursing thru my veins are gone. My stamina and endurance have improved and I find it mentally and emotionally refreshing to not have to plan another visit for another infusion. In a lot of ways, I feel I have gained back the normality in my life.
Now with the Covid-19 on our heels, another annoyance to contend with but being NED makes it just that, another annoyance like a pesky mosquito. Due diligence will get us thru this "crisis", the same due diligence, intelligence and fortitude that got us thru Durvalumab. 
Today I officially cancelled our trip to the Pacific Northwest. We did good as no losses were incurred except for a teeny tiny smidgen of disappointment for our celebratory end of treatment indulgence. No biggie, there will be time later for celebration.
Grahame-You are on your way, though at the beginning of your journey. I hope that those of us who have traveled your road provides you with inspiration to keep putting one foot in front of the other, and to use this forum to support you, educate you and get you to the finish line. With your background, you are fortunate to have a huge knowledge base to address your symptoms. I think Tomm said it best, a lot of the annoyances (side effects) was and is part of the price in (hopefully) extending our overall survival and halting progression. Hope is omnipresent.
Take Care, Blessings, DFK
Did you hear about the man who fell in an upholstery factory? He is said to be fully recovered.

Tomm-Excellent on #23. The countdown is on and your finish line is just around the corner. Opal and I have crossed the finish line with NED.....and speaking for myself.....the fatigue is gone and the wonkyness of the Durvalumab coursing thru my veins are gone. My stamina and endurance have improved and I find it mentally and emotionally refreshing to not have to plan another visit for another infusion. In a lot of ways, I feel I have gained back the normality in my life.
Now with the Covid-19 on our heels, another annoyance to contend with but being NED makes it just that, another annoyance like a pesky mosquito. Due diligence will get us thru this "crisis", the same due diligence, intelligence and fortitude that got us thru Durvalumab. 
Today I officially cancelled our trip to the Pacific Northwest. We did good as no losses were incurred except for a teeny tiny smidgen of disappointment for our celebratory end of treatment indulgence. No biggie, there will be time later for celebration.
Grahame-You are on your way, though at the beginning of your journey. I hope that those of us who have traveled your road provides you with inspiration to keep putting one foot in front of the other, and to use this forum to support you, educate you and get you to the finish line. With your background, you are fortunate to have a huge knowledge base to address your symptoms. I think Tomm said it best, a lot of the annoyances (side effects) was and is part of the price in (hopefully) extending our overall survival and halting progression. Hope is omnipresent.
Take Care, Blessings, DFK
Did you hear about the man who fell in an upholstery factory? He is said to be fully recovered.

Tomm-Excellent on #23. The countdown is on and your finish line is just around the corner. Opal and I have crossed the finish line with NED.....and speaking for myself.....the fatigue is gone and the wonkyness of the Durvalumab coursing thru my veins are gone. My stamina and endurance have improved and I find it mentally and emotionally refreshing to not have to plan another visit for another infusion. In a lot of ways, I feel I have gained back the normality in my life.
Now with the Covid-19 on our heels, another annoyance to contend with but being NED makes it just that, another annoyance like a pesky mosquito. Due diligence will get us thru this "crisis", the same due diligence, intelligence and fortitude that got us thru Durvalumab. 
Today I officially cancelled our trip to the Pacific Northwest. We did good as no losses were incurred except for a teeny tiny smidgen of disappointment for our celebratory end of treatment indulgence. No biggie, there will be time later for celebration.
Grahame-You are on your way, though at the beginning of your journey. I hope that those of us who have traveled your road provides you with inspiration to keep putting one foot in front of the other, and to use this forum to support you, educate you and get you to the finish line. With your background, you are fortunate to have a huge knowledge base to address your symptoms. I think Tomm said it best, a lot of the annoyances (side effects) was and is part of the price in (hopefully) extending our overall survival and halting progression. Hope is omnipresent.
Take Care, Blessings, DFK
Did you hear about the man who fell in an upholstery factory? He is said to be fully recovered.

Kate,
How wonderful to read of another confirmed NED sans Durvalumab, how totally cool AND awesome is that......We're fortunate to be walking on sunshine. Tomm we need a quip apropro for the wonderful news.
Happy me, DFK

Tomm-Excellent on #23. The countdown is on and your finish line is just around the corner. Opal and I have crossed the finish line with NED.....and speaking for myself.....the fatigue is gone and the wonkyness of the Durvalumab coursing thru my veins are gone. My stamina and endurance have improved and I find it mentally and emotionally refreshing to not have to plan another visit for another infusion. In a lot of ways, I feel I have gained back the normality in my life.
Now with the Covid-19 on our heels, another annoyance to contend with but being NED makes it just that, another annoyance like a pesky mosquito. Due diligence will get us thru this "crisis", the same due diligence, intelligence and fortitude that got us thru Durvalumab. 
Today I officially cancelled our trip to the Pacific Northwest. We did good as no losses were incurred except for a teeny tiny smidgen of disappointment for our celebratory end of treatment indulgence. No biggie, there will be time later for celebration.
Grahame-You are on your way, though at the beginning of your journey. I hope that those of us who have traveled your road provides you with inspiration to keep putting one foot in front of the other, and to use this forum to support you, educate you and get you to the finish line. With your background, you are fortunate to have a huge knowledge base to address your symptoms. I think Tomm said it best, a lot of the annoyances (side effects) was and is part of the price in (hopefully) extending our overall survival and halting progression. Hope is omnipresent.
Take Care, Blessings, DFK
Did you hear about the man who fell in an upholstery factory? He is said to be fully recovered.

Hey Barb, 
Wallow in the NED news....so gawd darn awesome. Confirmed, confirmed, confirmed! Did I mention confirmed? Have an uneventful #22, and continue walking on sunshine.
Take Care, DFK
 


 

Hey Barb, 
Wallow in the NED news....so gawd darn awesome. Confirmed, confirmed, confirmed! Did I mention confirmed? Have an uneventful #22, and continue walking on sunshine.
Take Care, DFK
 


 

Hi everyone, Good Tuesday,
Good dialogue on PetScans, CatScans and insurance barriers. For what it's worth, my Oncologist did a total of 4 CatScans during diagnosis, chemo radiation and Durvalumab over the course of 17 months. Got a Pet Scan a month after my completion of Durvalumab. When I asked about MD preference for Cat scans versus Pet Scans, he said CatScans provide a more detailed cross section of tissues and organs. If I'm not mistaken my last PETSCAN was a combination Pet and CT done simultaneously. This was different at diagnosis where I had a CatScan to confirm the tumor, followed by a Pet Scan to confirm biological activity.
Barb-I was told I was NED when there was nothing on my CatScan except scar tissue/fibrosis where once I had a large mass. I'm guessing those radiologists can differentiate. Hopefully, you'll get the answers to your questions when you have a one on one talk with your MD. Then you can tell us their take on it all.  I remember my ENT wanted a PET Scan to rule out tumors in my neck and my Oncologist said nope, a CatScan would be more definitive. 
Just of note and an FYI
My community music group frequently plays for hospitals, nursing homes, assisted living facilities etc. Today, a memo came down from the County to all healthcare facilities, "No more community outreach visits". This is in response to the COVID-19. Of course, they forgot to tell our group and we showed up to perform anyway.....all went well and we didn't get kicked off the property!
Take Care, DFK
I used to be indecisive. Now I'm not sure.

Welcome Babs,
Tomm did a a great job of covering side effects with you. My muscle aches and joint pains, headaches and back pain lasted thru out my year of Durvalumab......it was something I was able to live with with the aid of Ibuprofen 800mg and Tylenol ES. My symptoms never escalated to a point where I felt it needed more than my OTC analgesics. My thyroid levels were fine but I did experience fatigue and a lack of stamina and endurance. It helped that I continued being active and I tried to get in some "formal" exercise at least every other day. I never felt that it got better or worse as time went on with Durvalumab...it was just always there, reminding me that I do have some limitations. 
I will also echo Tomm's recommendation of drinking water and lots of it if you don't have any fluid restrictions.

Congratulations on having your original tumor delegated to being scar tissue. How freaken awesome is that!!!
Take Care, DFK
I'm taking care of my procrastination issues. Just you wait and see.

The entire family feels Opal’s loss.  Thank you for letting us know.  When Opal is returns to the group, we’ll all be here with open arms.  
Michelle

You didn’t miss anything.  DFK and I received a PM from our JG with an update. 
Opal posted a request for prayers as her husband was admitted to the hospital at the same time she was having scans.   
I think the best way to support Opal is to find the best Jersey style pizza and eat at least two slices.  She’ll be back to the Forum when she’s ready.  
 
 

Good Sunday Morning to all,
A philosophical post this morn......a little sadness, a little spiritual joy, intermingled with this journey called life. Allow me this time, with words, to express what is on my mind. The Durvies know me, so it is here where I will post and release the "Cracken" of my thoughts. It's also dedicated to Rower Michelle and Eagle 13.....read on. 
Recently, my bff of some 50+ years lost his partner Bill of 35 years, to cancer. They were gay and during the turbulent years of the 80's with HIV, panic and fear made them hide their sexuality, their coupling. It was a difficult time, the 1980's, as beautiful young men and women were dying in droves and there seemed to be no end or resolution to the HIV virus and crisis.
At the time, I was doing home health nursing in Hawaii. It was not unusual for gay couples to bring their entourage of friends with one dying friend to celebrate their last days in paradise. I was the nurse who went out to their luxurious vacation homes or condominiums on the beach, infused their "HIV" medications and gave them new IV packs of morphine to control their pain. 
I was tasked with visiting my HIV patients on an 8am-4pm schedule. Receiving the HIV infusions usually ruined the rest of the day for my patients so there were times when I broke the rules and would schedule a visit at night to allow my patients a "free" day of vacationing. Of course these night time visits included some blackmail as in providing me with a delicious home cooked meal or a nice new haircut and do, followed by a mai tai or two. Despite all this sadness around dying, you try to find some light and humanity.
Bill and my friend were not high risk and they weathered the HIV storm and lived a good life until Bill's diagnosis of Cancer. He passed within 18 months of diagnosis. Those 18 months were pure hell for my friend the caregiver and Bill, the patient. Bill was in treatment, suffered thru numerous hospitalizations and indignities. In came the hospital bed and wheelchair and daily dressing changes and doctor visits and social workers pushing to Hospice and hurried doctors. A world turned upside down. 
I asked my friend how I could help and he denied needing any help, he was taking care of business. His emotional grief was held at bay In lieu of pragmatic necessities and I honored his request. 
Last night I learned of Opal's  (our fellow Durvie) husbands passing last week Sunday. His body had succumbed after four years of living with Pancreatic Cancer. It got me thinking (as you can tell) about a myriad of things. Most of all, I thought about how much Opal has to contend with and it made me sad. Like the sadness I felt caring for so many HIV patients and my friend who cared for Bill. You are able to help the patient as their needs are direct and most times, solvable. But my feeling of helplessness and empathy to help those that are left behind stay with me, ever present.
We all know how much processing has to take place, the utter shock, the waves of grief, a new life to navigate. Somehow, our friends and family navigate thru all the challenges and like Cancer, our lives are never quite the same. And like cancer, it's a solo journey of navigating thru OUR uncharted waters. 
Thank you Opal for trusting me with your heart, your feelings and inviting me into your canoe. You will do almost all of the paddling alone,  but you know you have a team that will be there as you steer, guiding and supporting you on your new journey. You are loved.
Let me also relay that Opal's last scan was reported as stable, next check in 3 months.
Take Care, DFK

 
 

Hi all, 
I am going for my 9th dose of Durva today, also results of CT scan from last Thursday.  Did anybody in their course of treatment have side effects stop or get better?  Was having terrible muscle joint pain and started having back pain that would wake me early morning and had to get out of bed. It seems to be subsiding some.  Also my shortness of breath is less often.  I’m not complaining mind you, just curious. 
 
Thanks,
Babs