Rower Michelle

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! 

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

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. 

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

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

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

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.

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. 

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

Hey Ron. Good news!  Stay positive!

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

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.   

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 

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

Tomm, CONGRATS!  Welcome to the I'm done my Durva club.
Barb will be coming around the corner very soon.  Seems like just yesterday we were all embarking on this Durva journey one by one. With 😎 Bob the leader. 
Stay positive and stay well.
Hey Tomm, the K9s are asking why humans are wearing muzzles..  

infusion #26 for this Thursday canceled today. The  CT due after the final canceled, port will not be removed.. canceled.  Doctor didn't think the Cancer Clinic was a safe place for me. There will be no future infusions for me with a maybe sometime in future when things settle down. They did not close the clinic but the fact that I was NED 3 months ago was part of the decision. Anyone else canceled or delayed? 
I wish the best for my fellow travelers on this journey ..Stay Safe
 
Why do they call it the novel coronavirus? It’s a long story….
Why didn’t the sick guy get the joke? It flu over his head.
Why don’t chefs find coronavirus jokes funny? They’re in bad taste.
I’ll tell you a coronavirus joke now, but you’ll have to wait two weeks to see if you got it.
Nail salons, hair salons, waxing center and tanning places are closed. It’s about to get ugly out there.
Finland just closed its borders. You know what that means. No one will be crossing the finish line.

#4 done and dusted . Solo 3 hour trip to treatment centre and back as no support person allowed into unit. Persistent cough and mild shortness of breathe. Doc listened to chest and clear of noise. Bloods all stable and within normal parameters. Still couple months away from next CT scan. New Zealand in strict lockdown. Only essential workers allowed out homes or if have ssentialntravel like mine yesterday. Slow increase in numbers of positive cases but last 3 days been almost static . Some people not playing by isolation rules and getting a hard word from either their community or the system
 
Thanks for everyone’s positive approach and goodwill
 
Grahame

Wow Barb and Tomm are nearing the finish line.  Almost there peeps. Keep the faith (and the jokes) going!!!

#25 done with good blood work and some fatigue
When I got to the cancer clinic I was check out before I could get in the building. There are no guests allowed. Something new, everyone was wearing a mask, no smiles from my nurses, no newspaper or mags. Doc said he is not sure I can get #26 if someone in the clinic tests positive for Corvid 19.  All CT's are on hold so no final result (was ned last check). The clinic has 8 pods with 8 chairs each and now there are just 3 chairs in a pod to keep us away from the other patients.
I found out last week that many of the groceries in town allow online orders and pay with delivery or pick at the store, they bring to your car. 
good luck to my fellow Durvies..
Joke #1    I know a great joke about Corona Virus, you probably won't get it though.
Bonus joke...  Day 3 without sports. Found a lady sitting on my couch yesterday. Apparently she is my wife. She seems nice.
, 

Thank you Michelle snd DFK. I did tell my drs about the symptoms and she looked at my ct scans and didn’t see anything.  Shortness of breath has subsided and I have an appt with the pulmonologist in April. But I’m not due for another scan until May. 
Staying indoors except for s grocery run or drs appt. New York is eerily quiet. I live near Times Square and have never seen the streets so desolate. 
Be safe everyone 
Polly

Hi Polly,
I’ve been thinking about you in NY. Please stay safe.   The symptoms you describe could be a routine side effect or potentially pneumonitis, a more significant but treatable side effect.  Call your doctor and let them know right away.  Living in this world there is no such thing as a false alarm, only peace of mind.  Report everything.  It’s not complaints it’s informing the medical team. It takes a little while to make that mind shift.  Hang in there!
Michelle

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 

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.

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.  
 
 

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