Hi everyone. My sister was diagnosed with stage iv lung cancer last month. She never smoked, so the likely culprit was radon (we grew up in a high risk area in the 70's and 80's and I didn't know what radon was until the diagnosis). She qualified for a immunotherapy clinical trial and received her first infusion last week. There were some set backs since then, but she seemed to improve last night. Unfortunately, this morning she landed in ER with a possible infection. She is having a very difficult time breathing and her legs are in severe pain. Never been so terrified in my life. I was just wondering if these set-backs come with the territory. The prognosis from her doctor was a palliative one. The word manageable always seemed to pop up frequently during that discussion. Thank you in advance.
Immunotherapy Stage IV: Hi everyone. My... - Lung Cancer Support
Immunotherapy Stage IV
I am not receiving immunotherapy so cannot speak to that specifically. I was diagnosed before that was first line standard Of care. But..I just passed the 4 year mark of my diagnosis in April 2015 with Stage IV NSCLC Adenocarcinoma with cancer in both lungs, pleural effusion, adrenal gland, liver and subsequently cancer spread to my brain. Once the chemo began to work in the first few treatments in 2015, my cancer has been managed as a chronic disease, not a death sentence. I receive maintenance chemo every three weeks, and cancer is currently stable. There is a lot of cause for hope as well as the fear you are feeling. Best wishes
I also was diagnosed with stage 4 in 2013. Mine was NSCLC adenocarcinoma. You said she was in a clinical trial. Where has her cancer spread? Mine was inside and outside lungs, chest wall and lymph node. Was the trial the only option for her? I did chemo and two targeted drugs. My mutation was ALK and I could not do some of the other drugs. I haven’t had any active cancer since 2016. As far as setbacks go, one drug caused me to faint (broke my ankle in three places) and went into cardiac arrest while I was coming out of scanner. Hospitalized a couple of times due to pneumonia (I aspirated on food), and low potassium. I developed arterial fibrillation and had a loop implant to monitor my heartbeat. So yes, there can be setbacks, but I was determined to be a survivor. I am 72 and plan to be around many more years. I hope your sister gets better soon. Treatment plays havoc with your body.
All the best,
Judy
I can’t speak to the treatment or prognosis. I just want to offer prayers and healing thoughts.
Thanks again. Right now please we need prayers. She is in ICU and with poor prognosis. Please pray we need a miracle. I can’t lose my sister.
Prayers, we all hope ours can be managed as a chronic disease. 8 1/2 years later I still hope. Currently on a targeted immunotherapy. Stage 4 adenocarcinoma. Prayers is all we really have.
Adding my voice in prayer.
Prayers for your sister.
My daughter was diagnosed in 2012 with stage IV and mets all over. It took us a few weeks to get her diagnosis. But once we did we ran into 2 different thoughts. The first was from an oncologist who hadn't seen patients in years - a clinician/researcher. He said int he first place he had only seen this aggressive a case with young Asian women and that palliative care was all he would offer. Our daughter was not Asian and the fact he never mentioned any other treatment made us look for a new oncologist. The second oncologist said he would have had other tests done as well and then recommended a clinical trial because she was so young and otherwise healthy - 28. We, too were terrified. But she opted for the trial and dealt with the side effects, hiccups, and other issues that cropped up because she knew that a trial was her best option. Some of her issues were irregular heartbeat which brought us to a "regular" ER. There they tried to figure out what was wrong with her and didn't understand she just had chemo. If you are in an ER - you need to be separated from the general patients because of her cancer and treatments. The second "ER" type of visit brought us to our cancer center where they had her records and could treat her properly. If at all possible you want to stay at your cancer center to avoid having to tell and retell what she has, her drugs, treatment etc.
If you are not comfortable with her current oncologist and treatment plan - get a second opinion. Get molecular testing to see if she has an identified gene mutation that can be treated - targeted or immunotherapy. And look for a nurse manager/clinical trail coordinator for assistance.
We ended up with an additional 5 months with our daughter because of her doctor. And while too brief, I'm glad he took over her case and gave us more time. I hope some of this was helpful....it's never easy and it's always scary. But there are many going through this as well who are willing to help, support...Sending lots of prayers to you and your sister.
Ros
Sending her positive thoughts and prayers 💜
I also have Stage IV NSCLC Adeno with the KRAS Mustation - (Diagnosed 3/27/15) -- Mine started with a Brain met and Pulmonary Embolism and I had only two days warning (thought I had Vertigo, but it was neuro changes due to the brain met). Never had any lung symptoms and still not, now over 4 years later.
Please know that many can do very well with treatment and I'm one of those very fortunate people who had a great response to Immunotherpay (Opdivo). I'm now Stable and off "all treatment" and have been for over 2 1/2 years.
I am not sure why she would develop such severe pain so quickly? Do you know what Immunotherpay drugs she's on, I'm guessing if it's a trial it's new and/or they are combining it with another treatment?
I truly hope she will rally and have good results with her treatment. It's such a scary disease and affects far too many!
My heart goes out to her and all of your family.
~ Lisa
Has anyone sat down and talked with you about palliative care?
Soy to hear about your sister. Will keep her in my prayers
Hi I have had a few hiccups on immunotherapy quite quickly ,first it effected my liver function, this gave me nausea and chest pain ,this was resolved with steroids and a 4 week delay on next treatment .This time around my thyroid gland has been effected now taking medications for this at the moment ,it may change .So awaiting the next problem as I have just had another lot of immunotherapy .I too have lung cancer treated and it has moved around to my heart and brain and ?other lung. So early days for your sister. I was diagnosed in 2015,still here so don't give up hope.♥♥
Thought my recent posts went through but apparently it didn’t. Thank you from my heart for the replies, advice, and prayers. Unfortunately my sister passed away early Wednesday morning. According to the staff, cancer was just too aggressive. Was hopeful the treatment give more days to fight.. She was under palliative care and the first infusion before she passed. God I miss her! Wishing so much this was caught earlier. Agnes I love you.
I’m so very sorry to hear of your loss. Bless you as you grieve.
Oh no! I am very sorry for you loss and my late reply -- I don't know why, but for some reason, I am just seeing your update today! My heart goes out to your and your family.
Lisa
So very sorry.
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