Eagle13

Stay positive! Ask for a copy of the scan on a CD. There are youtube’s on how to look at the scan yourself. The PET should light up any cancer that is active. I pray that your scan is clear. 🦅

Watch the weight gain. It was fluid build up for me, Pleural Efusion. Mine was more rapid then a pound every two weeks though.

Opal- Scans are your friend. That is the only way to see how things are going. I have had many scans PETs and CTs. Also MRI. Sometimes there are discoveries and you make adjustments. Think positive!

I noticed a rash on my face similar to rosacia. It would become less noticeable as I became acustom to the treatment.

Robert- I pray that you get good results from your CT. I wanted the Durvalumab to work for me. Based on the technical data it works well for a lot of people.

Yes, every treatment I saw the PA or the oncologist. I told them both about the continued issue with shortness of breath at each meeting. They wanted to give the treatment time to work and were waiting for the time when the next CT was allowed by insurance. The CT is what they go by to see how things are working or not. A chest xray will show the Pleural effusion. I got a CT after the chest xray in the ER.

I found that coffee was a problem for me until I started the Tagrisso. It gave me dry mouth and irritated my throat. I believe my issue was the radiation treatement that focused on my lymph nodes next to my trachea. I was a major robust coffee drinker before the chemo and radiation. It seems like I am finally healing from the radiation and can drink my favorite coffees again. I had 7 treatments of Durvalumab(Imfinzy) before I had to stop. It is no fun to have to do the infusion every two weeks and the blood work that goes with it. For me, I noticed shortness of breath getting worse as the treatment progressed. Stairs were particularly a problem. It got so bad I had to start using the elevator to go up 1 floor. Finally during my 7th treatment visit I asked what I could do for relief. Inhaler, oxygen concentrator etc.... that is when I was told the onc would have to defer to the pulmonologists if I wanted those things. I went to the pulmonologist, he told me I had ~gallon of fluid and sent me to the ER for a Thoracentisis. That started to road to Tagrisso.

Kleo- drink a lot of water to counter the side effects. I found that drinking plenty of water every day made a big difference in side effects. It worked for the Platinum based chemo and the Durvalumab. In my cased the side effects of the Durvalumab were a cough, fatigue and the unfortunate build up of fluid. (Pleural effusion). Hopefully, you won’t experience the Pleural Effusion.

Robert- My original diagnosis was Metastatic Adenocarcinoma lung primary and I was Stage 3b at the time. I was told that the staging is based on where all the cancer is found. I had a spot on my lung detected from a CT at a physical. When a biopsy was scheduled via navigational bronchoscopy one of my lymph nodes on the opposite side was found to have issues and was biopsied. Tumor is stage 1, stage 2 is detection nearby but still contained on the same side in the same organ. Stage 3 was outside that organ but within close proximity like a lymph node. 3b since the lymph node was on the opposite side. I became stage 4 when the cancer had spread to the fluid in the pleural effusion. At least that is how I remember the staging being explained to me. I was also told that staging is the way the physician determines the approach for treatment. From what I have read my initial treatment was textbook for my diagnosis. Chemo and radiation. Once complete it was typical to go to immunoyherapy for “maintenance” or prevention treatment. Unforunately, the immunotherapy did not work as expected for me. You are correct, not every drug works for every individual. That is why it is critical to seek as much expert advise as you can get. Looking back, knowing what I know now, I would demand biomarker testing before any initial treatment. Of course hind sight is always 20/20. Who knows what would have happened since Tagrisso wasn’t approved by the FDA until I had already had a couple of months of treatment.

....itspread to my lymphnode so isn't that still metatastic? I am not a physician. The definition of metastatic is when the cancer moves from the oringinal location to any other location in the body. Don’t be afraid to get a second opinion from a specialist in lung cancer. The treatment is was given was not working for me. I asked my onc for a referral to a specialist. That is when my onc ordered the biomarker testing on my drained fluid. The test results and consultation with another totally separate cancer treatment facility is how my treatment changed. I also had a totally separate 3rd consultation with a no kidding Lung Cancer Specialist at another cancer treatment facility to confirm that the Tagrisso was the right choice for my situation. I was fortunate enough to find what appears to be the right treatment for me. At least so far. I am hopeful that it will be a long time before the Tagrisso stops working. I am told that at some point the cancer will prevail and I will have to switch treatment. The 3rd opinion specialist said he was hopefully it would be a few years or more. That was very encouraging.

I was on Durvalumab for 2 months. It did not work for me. I developed a plural efusion and had to have 4 Thoracentisis procedures to remove the fluid. The fluid was tested for cancer and came back positive. That moved me to stage 4. Luckily they did biomarker testing on the fluid and I came back as EGFR. Then I was switched to Tagrisso. The Tagrisso has shut down the plueral effusion. I have not had to have any fluid removed since starting Tagrisso a couple of months ago. I was told by the pharmacist that pleural effusion was a possible side effect of the Durvalumab. If you start experiencing severe shortness of breath you should go see your pulmanologist and have them check for fluid build up around your lung(s). If you have not had biomarker testing done I would ask for it. In my opinion the targeted therapy determined from the biomarker testing is the right approach. By design it goes after the genetic code that is the engine for the cancer you have. BTW- the Thoracentisis procedure is not a big deal. Seems a little scarry when you hear about it. If you have fluid build up, you will notice a major improvement in breathing once its removed. Check Youtube for a video of the Thoracentisis procedure. Don’t underestimate the power of prayer.