Barb1260 Posted March 10, 2020 Share Posted March 10, 2020 Hey Kate. In my head no uptake is the same as dead. I’m probably wrong but how else would NED show? Link to comment Share on other sites More sharing options...
DFK Posted March 11, 2020 Share Posted March 11, 2020 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. TJM and Tom Galli 2 Link to comment Share on other sites More sharing options...
Barb1260 Posted March 11, 2020 Share Posted March 11, 2020 DFK. Thanks! I’ve heard that before and you just made me remember that CTs are better. I will definitely get good details from the doc meeting. I was scheduled for a weekend in April at camp for cancer patients that the hospital rents every year. It too was cancelled because of Coronavirus. I was looking forward to canoeing dang it. Guess I may just have to go to the beach or at least the lake. Link to comment Share on other sites More sharing options...
Barb1260 Posted March 12, 2020 Share Posted March 12, 2020 Well here I am waiting for #22. Saw the onc. She also states CTs are better than PETs and she’s not worried about it. Asked her how will we know if I get to NED. “I consider you NED and you are all scar tissue”. Woohoo Steff, Rower Michelle, Opal and 2 others 5 Link to comment Share on other sites More sharing options...
DFK Posted March 12, 2020 Share Posted March 12, 2020 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 Barb1260, TJM, Tomm and 1 other 1 1 2 Link to comment Share on other sites More sharing options...
Barb1260 Posted March 12, 2020 Share Posted March 12, 2020 DFK-thanks and very cute! Link to comment Share on other sites More sharing options...
Kate7617 Posted March 12, 2020 Share Posted March 12, 2020 On 3/10/2020 at 7:29 PM, Barb1260 said: Hey Kate. In my head no uptake is the same as dead. I’m probably wrong but how else would NED show? No uptake= No cancer, as far as I was told. My PET on Wednesday, great results, clear, so I'm good for another 6 months check with PET. So I am going to live it up! At home, with my compromised lungs until the Corona virus is in the rear view mirror! So now is clear= NED? Thanks Kate Tom Galli, Rower Michelle and TJM 2 1 Link to comment Share on other sites More sharing options...
DFK Posted March 12, 2020 Share Posted March 12, 2020 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 Kate7617 1 Link to comment Share on other sites More sharing options...
Tomm Posted March 12, 2020 Share Posted March 12, 2020 DKF I've already heard like seven cancer puns today... If I hear tumor it's gonna benign Kate7617 and Opal 1 1 Link to comment Share on other sites More sharing options...
DFK Posted March 12, 2020 Share Posted March 12, 2020 Good one Tomm......love it.🤪 DFK Link to comment Share on other sites More sharing options...
Tomm Posted March 13, 2020 Share Posted March 13, 2020 #24 today with normal blood work and some fatigue. Kate and Barb ...Great news to hear NED from two today. I know Barb was concerned about the side effects before you started to get Durva and you got the best one NED!! "Why do cancer patients love puns? They have a great sense of tumor" Kate7617 1 Link to comment Share on other sites More sharing options...
Grahame Jelley Posted March 13, 2020 Share Posted March 13, 2020 Good to hear Tomm Interestingbfor me is now after #3 I can report that I immediately on way home feel like my allergic conjunctivitis becomes more noticeable and I get flitting and fleeting areas of itch in differing areas of body. Seems consistent and only for the immediate post infusion couple hours. Fatigue usually most noticeable Wednesday following Friday infusion. Mild dry cough and mild aches in muscle and joints when 1st mobilise in morning. Described to my wife “ like Tin man in Wizard of Aus” but am in NZ Grahame Rower Michelle 1 Link to comment Share on other sites More sharing options...
DFK Posted March 13, 2020 Share Posted March 13, 2020 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. Opal, RonH, Tomm and 2 others 5 Link to comment Share on other sites More sharing options...
Kate7617 Posted March 13, 2020 Share Posted March 13, 2020 21 hours ago, DFK said: 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 Well I do not know how much the Durva came into play for me, I only had 5 infusions of it, and that sent my health into a downward spiral, but happy day today clear scan and I am on cloud 9! Thank you for all the good vibes and words of encouragement, I am grateful, Kate Tomm and DFK 2 Link to comment Share on other sites More sharing options...
Kate7617 Posted March 13, 2020 Share Posted March 13, 2020 17 hours ago, Grahame Jelley said: Good to hear Tomm Interestingbfor me is now after #3 I can report that I immediately on way home feel like my allergic conjunctivitis becomes more noticeable and I get flitting and fleeting areas of itch in differing areas of body. Seems consistent and only for the immediate post infusion couple hours. Fatigue usually most noticeable Wednesday following Friday infusion. Mild dry cough and mild aches in muscle and joints when 1st mobilise in morning. Described to my wife “ like Tin man in Wizard of Aus” but am in NZ Grahame Please check your PDL1 and make sure no auto immune disease is in family history, being your own advocate is worth it's weight in gold! Good luck and hoping for a NED for you! Wash hands frequently and don't touch your face is my advise for all of us! Kate DFK and RonH 2 Link to comment Share on other sites More sharing options...
Kate7617 Posted March 13, 2020 Share Posted March 13, 2020 47 minutes ago, DFK said: 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. Great news! NED is on our side, keep on keeping on and enjoy your loved ones daily! Kate DFK 1 Link to comment Share on other sites More sharing options...
Grahame Jelley Posted March 14, 2020 Share Posted March 14, 2020 Thanks DFK your optimism is contagious. Let’s just replace Covid19 with your contagion Grahame Rower Michelle and DFK 2 Link to comment Share on other sites More sharing options...
Sillycat1957 Posted March 15, 2020 Share Posted March 15, 2020 On 3/10/2020 at 5:07 PM, Kate7617 said: Fight for your rights! And don't quit, you are entitled to a certain amount of PET scans while battling cancer. FIGHT FIGHT FIGHT!!!! 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. DFK and Rower Michelle 2 Link to comment Share on other sites More sharing options...
Rower Michelle Posted March 16, 2020 Share Posted March 16, 2020 Hi Durva Club! In case you all missed this, Kristin of Lungevity is hosting a virtual coffee under the “General” section of this Forum tomorrow at 10am ET. For many of us, activities have been canceled so this is one way to pass the time & keep each other company. We are invited to chat about anything. Hope to hear from you all! So great to hear about the fabulous news from Barb and Kate! Like Steve Miller said- keep on rocking! Michelle Tom Galli 1 Link to comment Share on other sites More sharing options...
Tom Galli Posted March 16, 2020 Share Posted March 16, 2020 Barb, The Durva Club is so active, I managed to miss your NED announcement. Barb is NED! How about that! Stay the course. Tom Barb1260 1 Link to comment Share on other sites More sharing options...
Barb1260 Posted March 16, 2020 Share Posted March 16, 2020 Thanks Tom. CT next week, fingers crossed. Tom Galli and DFK 2 Link to comment Share on other sites More sharing options...
Steff Posted March 16, 2020 Share Posted March 16, 2020 Barb - congrats on NED! Who knew scar tissue would be something to celebrate! lol DFK and Tom Galli 2 Link to comment Share on other sites More sharing options...
Sillycat1957 Posted March 16, 2020 Share Posted March 16, 2020 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 DFK and Tom Galli 2 Link to comment Share on other sites More sharing options...
Kate7617 Posted March 19, 2020 Share Posted March 19, 2020 On 3/12/2020 at 8:56 PM, Tomm said: #24 today with normal blood work and some fatigue. Kate and Barb ...Great news to hear NED from two today. I know Barb was concerned about the side effects before you started to get Durva and you got the best one NED!! "Why do cancer patients love puns? They have a great sense of tumor" Thank you very much! No I wasn't able to do 26 treatments of Durva, I did 5, that was all my body was able to tolerate! The great news is NED after one year, only scar tissue there. So 6 months and then another test. meanwhile, at home day 7 Cov 19 has decided to dictate my life, hey I am all for self isolation when needed. I love my house, and can always find ways to keep me satisified. Hey, we pay so much for the roof over our heads, now it's time to enjoy it. Be well, my cancer buddies! Kate Link to comment Share on other sites More sharing options...
PShsy Posted March 23, 2020 Share Posted March 23, 2020 Hi everyone, Just finished infusion #1 and # 2. Chest feels a little tight and have headache. Had scans done and left mass reduced from 4.2 x 3.2 to 2.4x 2.0. Other nodules reduced is So grateful. But am feeling more out of breath?? Love reading up on everyone. Polly Link to comment Share on other sites More sharing options...
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