RonH Posted April 20, 2020 Share Posted April 20, 2020 So very pleased to hear of those having or nearing completing their time in the Durva club and with so many resulting with a finding of NED. Wonderful news and truly an inspiration for many that this gives hope to. A sincere happiness for all of you. My updates: After my last CT Scan in early March indicated probable reoccurrence/progression of a tumor in my right upper lobe, and a possible new tumor in my middle lobe, my Medical Oncologist who has been treating me for the past two years has now suggested that I obtain a "Second Opinion". He arranged for this second opinion at the Ohio State University James Cancer Center as they apparently have better access to, and knowledge of, various clinical trials. I sorta have mixed feeling regarding the second opinion; on one hand welcoming a second set of eyes (by someone with more ALK Positive experience), but on the other hand, sort of a feeling that I am getting dumped as a lost cause. But being as stubborn as I am, and not willing to give up, I went ahead and met with the second Medical ONC. After the initial consult, the new Med ONC says that I might fit into one or two clinical trials, but I will need another Pet Scan, Lung Biopsy (EBUS) and an more in-depth biomarker testing completed first. (I previously had the Tempus Biomarker test that found my Adenosquamous NSCLC to be Alk Positive and PDL-1 Negative). For the time being, I was advised to continue with my Targeted Therapy TKI Alectinib. The PET Scan is late this week and the EBUS Biopsy the early the following week. Baring any new covid-19 restrictions before then they will proceed as essential procedures. However due to existing COVID-19 restrictions all my appointments except for the actual procedures have been changed from office visits to video chats. Even my yearly appointment with my Cardiologist this week was changed to a telephone call. I was really hoping to get my yearly EKG before being put under General Anesthesia for the EBUS, but apparently due to the COVID-19 restrictions, it's considered an elective procedure and the EKG cannot be scheduled. My past two EBUS procedures were done under "Conscious Sedation" whereas this time the Interventional Pulmonologist says due to the extent and locations of what he needs to get a sample of, he wants me under General Anesthesia. Also worrisome is that I have several heart stents and am in chronic A-Fib, but have to go off the Plavix and Xarelto days before the EBUS. I guess on the bright side, if something does happen, I will already be in one of the leading Cancer and Heart Hospitals in the region. Gotta to try to find a bright side to things. Tomm and Tom Galli 2 Link to comment Share on other sites More sharing options...
Sillycat1957 Posted April 20, 2020 Share Posted April 20, 2020 Geez Ron, sorry to hear about all the stuff you have to endure! I am sitting here getting my 17th infusion of Durvalumab, masks are a must before we come into the cancer center. No problems for me just low potassium right now 🤔 seems to always be something, nothing major. Kinda makes me nervous 😬 seems too smooth. Being K- Ras positive and all. However, I really do wish you the best of luck! You are not now not are not ever a lost cause! There will always be hope, you are in my prayers 🙏 I hope all goes well Take care Roseann Tom Galli, Opal and RonH 2 1 Link to comment Share on other sites More sharing options...
Opal Posted April 21, 2020 Share Posted April 21, 2020 Ron, real sorry to hear you have to go thru all that but don't you dare give up!! I will be praying for you and that all the best medical professionals will be brought before you. Miracles do happen. Believe it. Take care. Think positive. Opal RonH 1 Link to comment Share on other sites More sharing options...
Grahame Jelley Posted April 21, 2020 Share Posted April 21, 2020 Hi all sounds like quite a journey you are on Ron. All the best and trust all procedures will go well. Inhad my last Durvulamab deferred due to increasing cough and some exertions breathlessness and an anxiety about COVID virus even though my cough had been well established for some time and my wife and Inessentially in isolation for 19 days as part of New Zealand lockdown. They sent me for swab anyway and a chest X-ray . Bloods all good , swab negative but Xray shows possible radiation pneumonitis in zone of radiation. Upper mediastinum and left upper lobe. Have urgent Chest CT scan Friday and hopefully they will agree to continue therapy. Have been trying to control cough with durotuss ( Pholcodine) . I have a prescription for gabapentin as next step whilst awaiting CT scan and oncologist avoiding prednisone at present will keep you updated Grahame Tom Galli and Tomm 2 Link to comment Share on other sites More sharing options...
Rower Michelle Posted April 21, 2020 Share Posted April 21, 2020 Opal, thanks for letting me know about Ron! Ron, I'm so sorry about the most recent report. So it begins all over again, the diagnostic process. Hopefully the comprehensive bio-marker testing will reveal another targetable mutation such as RET or MET. Transferring to the University is your best bet, the University of Ohio has a stellar reputation. There's a few international lung cancer experts there, who knew? Have you reached out to the GO2Foundation to participate in the SPACEWALK observational trial with Dr Oxnard at Mass General? It's a free liquid biopsy with treatment recommendations based on the national ALK tumor data base they are curating. Nurse Alicia is the point of contact at GO2. Stay in the game and keep fighting! Michelle RonH 1 Link to comment Share on other sites More sharing options...
Barb1260 Posted April 23, 2020 Share Posted April 23, 2020 Hello all. 25 down, 1 to go. Blood work good. No strange side effects. I’m starting to get very anxious about what happens after. Just scans until it decides to rear it’s ugly head? I’m not sure what to expect. Anybody have any thoughts? Tom Galli and Sillycat1957 1 1 Link to comment Share on other sites More sharing options...
Rower Michelle Posted April 23, 2020 Share Posted April 23, 2020 Congrats on making into the home stretch Barb! Sounds like we're all living in scan land. Hopefully they will get spaced out over time. A few of my friends on immunotherapy are moving to the six month schedule. Hope and wait. RonH 1 Link to comment Share on other sites More sharing options...
Tom Galli Posted April 23, 2020 Share Posted April 23, 2020 Barb, You've run a long race. Time for a break. Do take advantage of NED and fill your life with things and people you enjoy. Stay the course. Tom Link to comment Share on other sites More sharing options...
Opal Posted April 24, 2020 Share Posted April 24, 2020 4 hours ago, Barb1260 said: I’m starting to get very anxious about what happens after. Just scans until it decides to rear it’s ugly head? I’m not sure what to expect. Anybody have any thoughts? Barb, way to go! One and done!! I know exactly how you're feeling about getting done. It is strange after so many appointments, treatments and scans...always something to keep it in check and now only scans every 3 months. Can be a little scary. It seems to always be in the back of my mind until I forget about it. Then I try to be normal, the old me again. I try and remind myself anxiety is not good for the immune system. It CAN make you sick. I don't agree with you on the rear ugly head part. That's not a given. Yes, we hear about reoccurrence but I also heard of survivors who had only one go round and are living long lives. I prefer to keep that in mind. So for now Jersey Girl, let it go and enjoy your new found freedom. Opal Sillycat1957, Rower Michelle, Barb1260 and 1 other 3 1 Link to comment Share on other sites More sharing options...
Barb1260 Posted April 24, 2020 Share Posted April 24, 2020 Thanks Opal. Your thoughts make me think about the future a little more positively today. After the last 18 months of treatments I need a long vacation, preferably at a beach 🏖 Opal 1 Link to comment Share on other sites More sharing options...
RonH Posted May 6, 2020 Share Posted May 6, 2020 First of all I would like to sincerely thank everyone who messaged me regarding my last post. Secondly I would like to apologize for not responding back sooner, however between the March CT Scan results that my ONC implied showed probable reoccurrence in my right lobe and likely progression to additional lymph nodes, and then being told that in his opinion that I should seek a second opinion consult elsewhere on possible treatments going forward, including clinical trials, sent me to a very dark place in my mind. It was somewhere that I have rarely ever visited. As a result, I just needed some serious alone time to get my head screwed back on straight. Suggestions and words of encouragement were deeply appreciated, but I needed to work through it all in my mind. Since then, I have met with the second opinion ONC who had me have a new PET Scan, followed by a Bronchoscopic EBUS fine needle aspiration of both the primary tumor location and several of the lymph nodes. Of course in the middle of this, the hospital initiated a policy that anyone having a pulmonary procedure done must have a COVID-19 test first and it be negative. I never realized just how far back someone could actually insert a swab into your nose. It felt like it was coming out the back of my head and actually made my eyes water! I can guarantee that I've never my finger or anything else that deep in there.😆 The PET scan results were pretty unremarkable. IMPRESSION: 1. The previously noted nodular opacity in the right upper lobe has decreased in size and FDG activity with current metabolic activity slightly above the blood pool. Since the prior PET/CT scan, there has been interval increase in size of right suprahilar consolidative opacities with mild associated FDG uptake. This is favored to represent post treatment/post radiation changes although evaluation of underlying malignancy is limited. Continued attention on follow-up imaging is recommended. 2. No definite evidence of FDG avid distant metastatic disease. The Pulmonologist debated whether to perform the EBUS with sample being taken from both the primary tumor and the lymph nodes identified however the second opinion ONC wanted tissue samples to send off to CARIS for more in-depth biomarker testing. The biopsy remarks from the Pulmonologist Report states: "Lymph node and right lung biopsy are both negative for cancer - this is good news. I think we can continue current therapy and monitor. This suggests this is mostly scar tissue, not progressive cancer." I have a videochat meeting with the new ONC this Friday to see what she thinks. My normal ONC is conservative and says that the EBUS aspiration may have not taken samples from exactly the right spot so although preliminarily findings look good, there is a possibility that they are not. I will update again once I hear from the ONC and what the plans are going forward, but at least things are not as bad as I thought they may be. Plus I found my way back from the dark side. Thanks again to ALL. I sincerely appreciated the thoughts and suggestions, they truly helped me when I was at my lowest. Ron Rower Michelle and Opal 2 Link to comment Share on other sites More sharing options...
Barb1260 Posted May 6, 2020 Share Posted May 6, 2020 Hey Ron. Good news! Stay positive! Rower Michelle and RonH 1 1 Link to comment Share on other sites More sharing options...
Rower Michelle Posted May 6, 2020 Share Posted May 6, 2020 Hey Ron- You’re down but definitely not out! We have ALK which is so rare the docs don’t see a lot of us which makes it an outlier they really don’t know what to do with us. Sorry for all those extra diagnostics and it does sound like the targeted therapy is doing the job. @Tom Galli got it right. You gotta stay the course! Hang in there buddy. We’re all pulling for you! Michelle RonH, Sillycat1957 and Opal 2 1 Link to comment Share on other sites More sharing options...
Barb1260 Posted May 6, 2020 Share Posted May 6, 2020 Well it’s finally here. I’m so excited for #26 tomorrow. I’m hoping that in a few weeks/months I will feel almost normal with no chemical induced side effects? Ready for a much needed break. I only wish I could take a vacation. Sillycat1957, Opal and Rower Michelle 3 Link to comment Share on other sites More sharing options...
Tomm Posted May 6, 2020 Share Posted May 6, 2020 Ron ..this new information sounds good to me, my last CT stills shows post treatment things in my lung. When you wake up in the morning you know your still here and you have a large team watching after you. Barb congratulations on making it to #26. I'm starting to feel much more energy now that I'm done I hope all the Durva club has a great spring and nice gardens Stay Safe Do you want to hear two short jokes and a long joke? Joke, joke, jooooooooooooke. RonH, Barb1260 and Rower Michelle 2 1 Link to comment Share on other sites More sharing options...
Opal Posted May 8, 2020 Share Posted May 8, 2020 Barb, CONGRATS and welcome to Done With Durva club. Go take that vacation, even if only in your mind. Ron, sounds good. An optimistic ONC can make all the difference. Maybe a blessing your first doc sent your for that second opinion. Hang in and stay positive. Opal Rower Michelle, Barb1260 and RonH 3 Link to comment Share on other sites More sharing options...
Barb1260 Posted May 8, 2020 Share Posted May 8, 2020 Thanks Opal. I’m hoping I can get a hotel on the GA beach sometimes soon. I’ll bring my masks and clean the room if I have to. Rower Michelle and Opal 2 Link to comment Share on other sites More sharing options...
Opal Posted May 9, 2020 Share Posted May 9, 2020 Barb, soon as I can take the beach chair, I'll head to the Jersey Shore and chill out there foe ya' and send you the vibes. Several are open for exercise, but I'm more laid back type😁😁 Opal Rower Michelle and Barb1260 1 1 Link to comment Share on other sites More sharing options...
Rower Michelle Posted May 9, 2020 Share Posted May 9, 2020 No beaches here in KS but we WILL head out to one of the “lakes” and camp out in some lawn chairs to celebrate Barb’s crossing of the Durva finish line! Carry on Barb! Opal and Barb1260 2 Link to comment Share on other sites More sharing options...
Lisa66 Posted May 21, 2020 Share Posted May 21, 2020 Hi all, I am new to the Durva club. It is a club I would not have thought of six months ago, but my reality has changed since then. Barb, I was done with radiation on the twelfth of March and chemo on the 15th of March and now started on durvalumab a couple of weeks ago. I had a rough time of it with chemo and radiation and was like you, I just wanted to go somewhere and not think about cancer. We live in NC and was able to go to Myrtle beach when it reopened and it was wonderful. Take a little weekend and go somewhere it is good for the soul I think. Lisa Barb1260, Rower Michelle and Tom Galli 3 Link to comment Share on other sites More sharing options...
Barb1260 Posted May 21, 2020 Share Posted May 21, 2020 Hi Lisa. I’ll get somewhere soon. Just have to figure it out Sharon k 1 Link to comment Share on other sites More sharing options...
Sillycat1957 Posted May 23, 2020 Share Posted May 23, 2020 Hi Lisa66, Welcome to our club! I've been a luker for some time, I just had #18 I'm feeling a little blah, but somewhat optimistic! I had my 9 months CT Scan and my tumor is now down to a mere 8mm. So yay me! Everytime I think no way I hate this treatment, it's not working why am I torturing myself! I get good news. Then I change my attitude. So just know that we here have been thru things that you will probably experience, so be sure to check in. I wish you well on your journey! Take care, have a great weekend, stay safe 😃 I don't know any cool jokes like Tomm "keep your face to the sunshine and you cannot see a shadow" Namaste, Roseann Rower Michelle, Lisa66 and Tom Galli 3 Link to comment Share on other sites More sharing options...
Tomm Posted May 24, 2020 Share Posted May 24, 2020 Lisa66 enjoy the greatest new lung cancer drug with curative intent this is true at my house Rower Michelle, Lisa66, Tom Galli and 1 other 1 3 Link to comment Share on other sites More sharing options...
PShsy Posted June 3, 2020 Share Posted June 3, 2020 Hi all, Just a little update. As I was approaching # 5 I was experiencing some chest pains and shortness of breath so my CT scan that was scheduled for 5/28 got bumped to the 5/5 and treatment was to be deferred. Worst scan ever.. nurse did something wrong and I ended up with a very painful extravasation. Nurse missed the vein putting the needle in. Results from the scan indicated a plureral effusion or suspected pneumatitis from radiation. I was placed on high dose of prednisone, currently tappering down. Oh and somehow during this time I managed to be exposed to covid and tested positive for the antibodies. I had a follow up today with the thoracic oncologist and was informed that I will no longer be doing immunotherapy. I’m having a very mixed reaction to this. My tumor has shrank from its original 4.3 cm x 2.9 cm to 2.0 x 1.9. One node has remained the same. And one node has slightly decreased since November 2019. I am super grateful for the treatments but what happens if I start to go backwards. I’m not sure what the next steps are... Polly Sillycat1957 and jack14 1 1 Link to comment Share on other sites More sharing options...
jack14 Posted June 3, 2020 Share Posted June 3, 2020 Gee Polly that sucks was it pure durvalumab and was it near the port? Link to comment Share on other sites More sharing options...
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