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DFK

Valuable patient experiences and support with Durvalumab Forum

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Just spent the last 4 hours reading the wealth of information shared by Durvalumab users. I am 7 months in, 14 infusions behind me (2 infusions #9 and #10 held for symptomatic pneumonitis, infectious bronchitis, tachycardia and exertional SOB with resulting lowering of pulse oximetry saturation). Which was treated with high dose Prednisone and antibiotics. Diagnosed Lung CA Stage IIIA September 2018. 

I am a certified critical care Registered Nurse who have also spent years following patients in the home setting for both rehabilitation and Hospice. Despite my medical background, nothing prepares you for a cancer diagnosis. 

In my discussions with my physicians, I am pragmatic and expect to have a respectful peer to peer relationship. I fall apart emotionally at a later private moment when I am acclimating to my role as the patient and not my usual role of a healthcare provider. It is humbling. 

I am also a newbie to specialized Cancer treatments and have done my fair share of research with standards of practice for my Stage IIIA Lung Cancer.

Will post on Immunotherapy/Durvalumab Forum.

 

 

 

 

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Hello and Welcome! 

The Durva Club is a wonderful group of people.  This Forum is a very supportive community where you will also find some other comrades in arms from the healthcare industry.  For those of us that were in the biz at the time of our diagnosis, it’s like being thrown into the deep end of the pool, having to learn a whole new language super fast.  The irony of our treatment is that for me, as a patient the “system” doesn’t work as well as it should. The cancer centers are a blessing, particularly the schedulers. They are the ones that really run the show.  Glad to meet you. Let us know how we can support you. 

Michelle

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Thank you Michelle. I have been a very strong advocate for my care and I’m not ashamed to admit it. I delivered exceptional quality care to my patients when I worked and I expect the same in return from my medical team. Problem is, I knew almost nothing about cancer, specifically lung cancer. I am an RN so I was able to glean what I needed from the numerous articles online but still, there was a huge learning curve. How do you ask the questions when you do not know what to ask. How do you know that your plan of care is appropriate when you do not have access to standards of care......it was a lot of work to get to where I am today and hopefully as much comfort as I have garnered from reading on this forum, I will be able to assist and guide others new on their journey.

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Hello DFK.  I never was treated with Durvalumab .  I am  a retired RN.  I worked at Slidell Memorial years ago .  My husband was in the Navy.

My husband moved me 17 times. 

I was diagnosed with Stage 3 B Lung Cancer in December 1997. I had Chemo 's  , Radiation, later surgery then more chemo. I was 50 years old then.

I worked as an RN until I was 67 years old.

Tomorrow is  my Birthday, and I will be  ------------- 72  !!!

Hope you respond well to this chemo.  Keep us posted.

Donna G

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Donna G, thank you for posting your story. Everyones story or journey is as different as the disease, but to hear a survivor story, and a great one at that, is so so encouraging and provides hope.  (So much better then reading statistics on lung cancer reoccurrence).  Thank you so much for sharing. (so sorry about your husband)

A very HAPPY 72nd BIRTHDAY to you,🎂

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Thank you Donna for your comforting words. Twenty two years of living cancer free after a devastating diagnosis is truly an inspiration for all of us currently on our journey. You are giving us the gift of hope, and for that I am very thankful and grateful. I imagine God had a special plan for you to continue your calling as a RN and healer.

I was initially told surgery would be my first line of treatment by my Pulmonologist but when lymph node involvement was confirmed, I was told my cancer was inoperable. My plan of treatment then became chemotherapy, radiation and 1 year of Durvalumab. I am doing well on Durvalumab and have just passed the half way mark with 14 doses down and 12 to go. There is barely a shadow on the Cat Scan where once I had a 5cm x 5cm tumor.

My oncologist prefaced his treatment plan with, "I can offer you a cure". To say I was stunned is putting it mildly, but that is the premise I entered treatment with and that is the hope I carry with me daily.

Thank you for continuing to have the time and compassion to share, inspire and instill hope on this forum.

Blessings and a very Happy Birthday 🎊🎁🎈 

P.S. My son is stationed at the John C. Stennis Space Center, he is also in the Navy and lives in Slidell. My condolences for the loss of your husband and thank you for supporting him (17 moves-yikes) while he served our country. 

danielle

 

 

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Danielle I believe nursing was my call in life from when I was a small child.  After I got back to work I was in what they call the 

"Float Pool" .  When I got to work they would tell me where they needed me that day.  One day I was told I was to go to ICU ( Intensive care unit) 

There they told me I had a second patient coming shortly from surgery that just had a lobectomy for lung cancer .  She arrived and as she got more alert

we sure started talking.  She attended my church.  I shared I really knew what she was going through.  The talk continued.  We ran into each other  I told her about 

our local support group..  Later we became good friends. My friend was diagnosed again 5 yrs later with a different NSCLC.  Then 5 yrs ago would you believe a third 

NSCLC  !!!!!!!!!!!!!!!!!!!!!!     She has survived 3 times  !!!!!!!!!!!    Would you also believe she asked me to go for lunch today to celebrate my birthday !

She is not the only person assigned to me over the years.  In some ways it was a blessing to my nursing career to be to have had that experience.

take care,   Donna G

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Donna,

 

A beautiful story.....on so many levels.......friendship and over coming NSCLC 3x's! Now that gal has a mission in this life😇

 

We are blessed daily with an amazing grace and my heart fills with gratitude when I am fortunate to notice the many blessings I am gifted with. I too feel that nursing was a privilege. I never dreamed of being a nurse but it's funny how you're led to be where you need to be. 

Enjoy your birthday lunch and friendship.....don't you love making new memories?.....how sweet

danielle

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On 8/3/2019 at 8:58 PM, Donna G said:

Hello DFK.  I never was treated with Durvalumab .  I am  a retired RN.  I worked at Slidell Memorial years ago .  My husband was in the Navy.

My husband moved me 17 times. 

I was diagnosed with Stage 3 B Lung Cancer in December 1997. I had Chemo 's  , Radiation, later surgery then more chemo. I was 50 years old then.

I worked as an RN until I was 67 years old.

Tomorrow is  my Birthday, and I will be  ------------- 72  !!!

Hope you respond well to this chemo.  Keep us posted.

Donna G

Donna, late Happy Birthday!!! I will reach the 70 mark next month!!! Blessings.

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