Opal

Sillycat...re the port... No wonder woman here. I watched my husband get stabbed in his port for 2 years before I started chemo then Durva.  His stab looked much more painful. I used to get weak in the knees. Just wanted to throw that out there in case anyone gets a port removed and ever (hope and pray not) has need for one. The vein route isn't so bad.
Opal

Sillycat...re the port... No wonder woman here. I watched my husband get stabbed in his port for 2 years before I started chemo then Durva.  His stab looked much more painful. I used to get weak in the knees. Just wanted to throw that out there in case anyone gets a port removed and ever (hope and pray not) has need for one. The vein route isn't so bad.
Opal

Sillycat...re the port... No wonder woman here. I watched my husband get stabbed in his port for 2 years before I started chemo then Durva.  His stab looked much more painful. I used to get weak in the knees. Just wanted to throw that out there in case anyone gets a port removed and ever (hope and pray not) has need for one. The vein route isn't so bad.
Opal

Sillycat!!  Congrats!! Welcome to Done Durva Club.  You did it!! 
I survived the infusions, all 26, no port. Went the vein route but my Onc said I had good veins no reason to give me a port. In a crazy way I got used to it  but don't know how because I'm wildly petrified of needles.  Nurses were wonderful!
Enjoy having a little extra space on your calendar now and Best Wishes for great scans.
Opal

Sillycat!!  Congrats!! Welcome to Done Durva Club.  You did it!! 
I survived the infusions, all 26, no port. Went the vein route but my Onc said I had good veins no reason to give me a port. In a crazy way I got used to it  but don't know how because I'm wildly petrified of needles.  Nurses were wonderful!
Enjoy having a little extra space on your calendar now and Best Wishes for great scans.
Opal

Sillycat!!  Congrats!! Welcome to Done Durva Club.  You did it!! 
I survived the infusions, all 26, no port. Went the vein route but my Onc said I had good veins no reason to give me a port. In a crazy way I got used to it  but don't know how because I'm wildly petrified of needles.  Nurses were wonderful!
Enjoy having a little extra space on your calendar now and Best Wishes for great scans.
Opal

Outstanding news!!!! Go Barb!!!

I had my port removed in Dec 2018.  Last Durva infusion was July 2018.  I was glad to have it removed and have not needed it since. 🙂
My treatment changed and am fortunate that I have not needed any infusions.  I feel very blessed. 🙏🏻
 
🦅   

Congrats on joining the Done with Durva group!   That’s fantastic, I remember your early posts and girl you’ve come a long way!
Keep on the LDN at the pain clinic, they will definitely know about it! 
 
Rock and roll!!!!

Good to hear from you too Opal and congrats on your 2+ years from diagnosis....and to see Bridget and Grahame posting, it's like old times again. I so remember being lost in an ocean of questions and fear when I happened upon Lungevity. We were the pioneers, embarking on this very new immunotherapy drug. We learned along with our physicians and us Durva's picked each other up when we needed picking up and carried others when we could. We weathered the calm seas as well as the oceans squalls. That's one thing I remember so vividly, that time marches onward no matter what the day presented, and that one month easily turned into three and five and eight and then the twelve months were over. For those still on the Durvalumab train, know that there were others before you that had the same questions, and fears and annoying and sometimes debilitating symptoms. But also know that we are your inspiration for a life beyond Lung Cancer......
 
Hello to Tomm, I still love your one liners, I bow down to you OH MASTER OF GIGGLES, to Tom Galli for his eternal and non ending support, Do you ever sleep? and Rower Michelle for her spunk and humor and "let's get it done" Jersey girl attitude, I want you in my corner!!!!, Happy Birthday Ron, and like Opal said, many, many, mucho more to come, Roseann, you go girl, good to see you're still slugging away, admirable fortitude, I'm impressed....and Barb1260, My doc said the same thing when I was done, "Get out of here and go live your life". How blessed we are to be able to do that.....strong words that meant the world to me. Opal, your gentle and Gaman spirit comes thru loud and clear in your postings. You are loved.
And to the newcomers that I haven't met, you're in great hands. Carry on
Blessings, DFK
*Gaman (Japanese)-"enduring the seemingly unbearable with patience and dignity". The term is generally translated as "perseverance", "patience", or tolerance.

Ron- so glad you checked in and with great scan result news!  Congrats! So good hearing from you. Happy 64th and wish you many many many more!
DFK-  good hearing from you as well. April was my 2 yr diagnosis anniversary. All is well. 
Opal
 

Ron- so glad you checked in and with great scan result news!  Congrats! So good hearing from you. Happy 64th and wish you many many many more!
DFK-  good hearing from you as well. April was my 2 yr diagnosis anniversary. All is well. 
Opal
 

Ron- so glad you checked in and with great scan result news!  Congrats! So good hearing from you. Happy 64th and wish you many many many more!
DFK-  good hearing from you as well. April was my 2 yr diagnosis anniversary. All is well. 
Opal
 

Thanks for sharing. Inspiring and aspirational story. Stage 3b and halfway through 26 projected Durvulamab course. Last scan 3 months ago and another planned but not yet scheduled . 50% shrinkage of Primary lung and nodes not remarkable upon it seems 
blessed that side effects been minimal though recent weeks mildly intrusive muscle and small joint pains . 12 months since unexpected diagnosis and excited to have beaten the 8 month survival odds to be able to walk my daughter down isle on 22ndAugust. It seemed such a far away goal at diagnosis and yet here we are with a positive future based on all your reported successes
 
kia kaha from New Zealand .Remain strong , positive and eyes on the future possibilities 
 
Grahame 

Oh my gosh, what an awesome "alert" I received this morning.....way to go Ron, congratulations. I do remember how devastating it was for you to get yanked from Durvalumab and the rigors you went thru to be in the Alk+ targeted therapy club. Awesome to get an update, and a miraculously beautiful update at that. I have been MIA from Lungevity, living life full and robustly well (my doctors words, not mine) and like everyone else, having my medical dance card emptied and fairly blank in this Covid environment. This month marks my 2 year anniversary since diagnosis of NSCLC Stg 3b and I'm 7 months out from completing my year of Durvalumab. Last Cat Scan in May, NED. And though I have been gifted with NED throughout my journey, like the ghosts of Christmas past and Christmas future, the memory of what was, and the haunting of what could be, is never far, always present as a reminder of my membership in the club no one wants to be a member of. I have learned to live with these hauntings, as a gift, to enjoy every blessed moment, to the best of my ability. Wishing everyone another step towards health, love and happiness.
Blessings, DFK

I see a lot of new names here and not many of the old "Durva Club" members which I hope is a good sign that Durvalumab worked for many. I did do a member update elsewhere in the Lungevity forums, but I wanted to post here as well as I spent so much time here over the past 2 years and met so many great people here. I still stop by here from time to time to check on you all. I would name names, but I don't want to leave anyone out because so many have been an inspiration and provided support, even during those "dark times". You know who you are!
My Update:
Diagnosed NSCLC 3a in May of 2018 with initial treatment being Concurrent Chemo/Radiation which was then followed by Immunotherapy. After 18 Durvalumab Infusions my CTs indicated probable recurrent cancer in main tumor and possible additional lymph node involvement/progression. Due to indicated likely progression, the Immunotherapy infusions were stopped. From subsequent NGS Testing (Tempus) of a biopsy tissue sample I discovered that I was PDL-1 Negative and EML4-ALK Positive. In October 2019 I started Targeted Therapy with Alectinib. Having had several CT's Biopsies, and PET Scans since, each indicating less indication of progression, the findings of my latest CT last week now read:  
No convincing signs of recurrent or metastatic disease in the chest. Postradiation fibrosis of the right upper lobe as described previously noted surrounding groundglass changes and nodularity of the right upper lobe has resolved and was probably related to postradiation pneumonitis. Mild scarring noted in the lingula, otherwise the lungs are well aerated. No new mass, consolidation, pleural effusion or new worrisome nodularity.
A great 64th birthday present!
Hope all are well.
RonH

Well another CT in the bag. Doc said go live your life and I’ll see you in November. 

Thank you Michelle and Opal.
 

Hey ladies, JG checking in here.  Polly probably a good idea to get a second opinion from an expert in lung cancer (most of us see general oncologists).  You can start by contacting the help line at the Go2Foundation or Lungevity.  I know that Go2 maintains a list of regional experts.  In your neck of the woods the doc will either be affiliated with either Memorial Sloan or Mass General.   I understand Mass General is offering video appointments.  Let us know how it works out. 
Michelle

PShsy...it will take some work to get a second opinion but definitely worth it. Get your medical file, treatment records, and get a different Oncologist. Get in to see one ASAP. You're city is going green or opening up I thought I heard. 
Perhaps when Rower reads your post I'm sure she will have a couple of ideas to pass on. She's got Jersey girl roots not so far away.
You and your health are definitely worth your time so Just Do It. Pleez?
Good going getting into biking and yoga. 

PShsy...it will take some work to get a second opinion but definitely worth it. Get your medical file, treatment records, and get a different Oncologist. Get in to see one ASAP. You're city is going green or opening up I thought I heard. 
Perhaps when Rower reads your post I'm sure she will have a couple of ideas to pass on. She's got Jersey girl roots not so far away.
You and your health are definitely worth your time so Just Do It. Pleez?
Good going getting into biking and yoga. 

Hello all. Been a busy bee since my last infusion on May 7th. 3 weeks after I felt like my old self and I feel better a little more every week. Funny thing is I would get sob doing too much and I just realised this too is getting better. Decided to tear down a wall which was a 4 day job. It’s been 3 weeks, it has grown into new floors, paint, doors-what has possessed me?  I’m glad you are doing well and I’m hoping we all keep getting good results. 
barb

Lindsay, I'm in the Done Durva Club but I understand the Durvies going to the Medical center I go to are now getting double dose like you since Covid. Have not really heard anything further tho. Good luck. Stay positive. 
Opal

Note to Lindsay, and then PShsy...
Warning, this is long, sorry.
Lindsay I finished #26 infusion about 6 months ago. Here's my side effects story..  Keeping in mind I did NOT get double dose once a month. At my #2 infusion I also received a flu shot. About 2 weeks after that infusion I started to develop a rash. A minor side affect not too prevalent or talked about. My rash didn't itch, it was just red blotches which started on face and disappeared then showed up on my neck and chin, and disappeared did this small sections until it hit my ankles. Not pretty but not painful. Derma gave me every cream and ointment but nothing helped it. A couple Durvies sent me a link that apparently those administering never realized that one should not get Durva AND a flu shot same day or I was just sensitive. 
So along with this (Polly pleez note) an early scan showed slight pneumonitis. Thus Durva was held and I was on 70mg Prednisone and tapered down over I think the next 6 weeks. Steroids were awful. I cried, got cranky and wanted to eat but tried not to. Rash disappeared and so did pneumonitis. Back on Durva. Polly why are they taking you off? My main complaint, I could only sleep it seemed in 3 hour increments for the duration. Fatigue was terrible. I too gained the 30 pounds without really eating more, probably less then normal. It was all in my mid section. I continued on exhausted but managed. Scans showed shrinkage and good stuff. I didn't have PDL or a mutation. Testing showed no active "C".
At 20 weeks I was noticing knee and joint pain which continued and lessened just recently. I get stiff now in joints at one position for long periods but chalk it up to a few years older. Not complaining.
Last week I had my 3 month scans and all is well. Stable and labs great. My Onc seems to think I may be stretching scans to 6 month intervals after September's. I like that but then I don't.   I managed 26 infusions and a separate lab poke for each visit without a port and no problem. I attribute that to some very good nurses. 
Well thru all this, I wondered if I'd get a head/brain scan ever again. I was told no symptoms, Stage 3 no scans needed. I still worried.
Yesterday afternoon while sharing care giving for my Mom, I jumped up from a cat nap and tried to make a quick dash to my Mom except that my face had a quick meeting with the kitchen floor. I ended up in ER (oh I didn't want to go!) with 6 stitches, a broken tooth and a sprained pinky finger. Two inches I would have hit the soft carpet.  There is a silver lining in this. Stitches in the eyebrow and all.....ER had to do a head scan.  All is good. Clean and clear.
I wish all you Durvies and caregivers courage, strength, faith and hope to keep going. Miracles do happen.
Hugs to all,
Opal
 

Sillycat, you are in the home stretch now. Almost done. A piece of cake.   Happy for you!
Opal