First post here.
Utilizing forum for comparison of my experience with Durvalumab to others and find your comments and experiences invaluable.
As we navigate this "new" life, it's comforting to know, we are not alone. Diagnosed with Lung Cancer Stage IIIA September 2018. Radiation and Chemo completed late December 2018. Started Durvalumab January 2019.
Labs are done every two weeks, usual CBC, CMP, TSH, Cortisol. So far, all my labs have been within normal values. I am 7 months in but have missed two doses of Durvalumab secondary to pneumonitis. I have received #14 doses so far.
MD appointments every four weeks. MD available online should I have any questions or concerns. Had a bout of infectious bronchitis and was able to procure antibiotics online with a status report while receiving Durvalumab.
Cat Scan done 2 weeks after last radiation and chemo treatment in January 2019 which showed a 35% reduction of my tumor.
Cat Scan repeated in April 2019 for my complaints of shortness of breath. Revealed Grade 3 pneumonitis. Durvalumab x2 doses held and high dose Prednisone ordered.
Cat Scan repeated after Prednisone completed May 2019, pneumonitis resolved and Durvalumab restarted. Tumor almost non existent. Measures 1cm (original tumor measured 5cm). My oncologist believes my pneumonitis was a result of my radiation therapy and my Radiation Oncologist believes my pneumonitis was a result of Durvalumab. Both had solid data to base their findings on, but it didn't really matter as treatment is high dose Prednisone regardless of genesis.
Pulmonary function tests completed at the time of my diagnosis was within normal limits for my age and gender, 65/female. Pulmonary function tests completed in April with pneumonitis diagnosis showed a 50% lung function reduction. As I relayed to my MD, my lungs are shot! And I don't expect any real improvement due to radiation pulmonary fibrosis.
My primary side effect is localized itching to my back area after a one time breakout of tiny white pustule rash. My capacity for physical activity has decreased significantly due to my poor pulmonary function but I push myself to be active with hiking and biking.....it just takes me a little longer. I also find fatigue is my new friend. Fatigue used to visit me every now and then but recently, fatigue has been a faithful daily companion. I currently am experiencing a sore throat with some hoarseness to my voice as well as a loss of volume and pitch. I was diagnosed from my symptoms as having acid reflux (post radiation to my esophagus) and was started on Prilosec. If after being on Prilosec for two weeks and there is no improvement in my symptoms, I will request a diagnostic visual scope of my vocal chords and throat for a more definitive diagnosis.
During chemo and radiation, I was able to maintain walking as my main physical exercise. Three months after chemo and radiation, I started to ride my bike for 15 minutes (that's all I could tolerate) and am currently up to 8 miles/1 hour with a slight incline, 3x/week. I do push myself but I believe I need to contribute as much as I can to my pulmonary health and the views are beautiful on our bike path.
A wise MD told me to let the drugs take care of my cancer, my job is to take care of my body. I try to eat nutritiously, exercise and most of all, drink 8-9 glasses of water a day. Previously I was lucky if I drank a couple glasses of water a day. I believe increasing my water intake to 8-9 glasses a day has kept a lot of the side effects at bay.....my opinion of course, but anecdotally, it has worked for me. I'm no fanatic with my diet but I am cognitive that nutritional food choices is the best way.
Physical side effects have been nominal starting with chemo, radiation and now Durvalumab.
Emotional challenges are present. I have chosen to disclose my diagnosis only to my spouse and adult children. I am inundated with love and support and feel gratitude for every single day I am living. I am very involved with my three grandchildren, ages 8, 7 and 5. They are active and they help to keep me moving and on my toes even when I feel fatigued. I am very involved socially with my friends and I rather like the fact that they do not know about my diagnosis.
I was preliminarily diagnosed during a visit in the Emergency Room. After that visit I met with my primary care physician and decided that I would have more faith and trust in receiving care in another city which currently requires me to fly to every two weeks. During my chemo and radiation, my husband and I were fortunate to stay at the American Cancer Hope Lodge and we commuted back home on weekends to keep up with our "normal" lives. Sure it’s costly and expensive and puts a real dent in our budget, but I feel I made the right decision and all that money that I spent on cigarets, are now directed to taxi's and plane fare.
Yes, I am an addict and smoked from the age of 14 and quit 6 months before my diagnosis. I say I am an addict because smoking has been a lifestyle for me and though I have no intention of ever smoking again, I still remember how my anxiousness was alleviated, how calming that cigaret could be. Enough said.
I do feel overwhelming sadness at times when I think about my "cancer" diagnosis and how much my life has changed BUT I am very fortunate to feel an immense amount of gratitude for how well and on track my cancer treatment is and has been. I tend to go to "dark" places if I start to feel new pain, new symptoms. My mind is convinced that a new cancer is growing. My burden to bear, my burden to not go there. It is a work in progress. I am getting better at not visiting those "dark" places.
Reading this forum has validated that I am on track and that my medical care is on par with others. I thank each and every one of you for taking the time to share your experiences.
