Living with lung cancer - Introduce yourself & come say hi

Hi, I’m Steve and was diagnosed late last year with stage 4 lung cancer. It’s currently just in my right lung and I was put on Tagrisso four weeks ago. It appears to be working as many of my symptoms such as regular coughing, nausea, lack of appetite, difficulty sleeping, and runny nose have been reduced or gone away. I still have shortness of breath and feel winded after activity, and periodic dry cough. I have lost a lot of weight since last Oct (20#) and struggling to gain it back on.
Does anyone have any suggestions how to gain weight back? Also I may be starting chemo in another month or so. Are there any side effects that I should be aware of? Thank you

Welcome Steve @stevenh31, It's good to hear that some of your side effects have lessened over time. There are some that seem to hang on and are with us for the long haul. The drugs can be quite effective but harsh. I take a different targeted therapy, alectinib for ALK positive stage 4 lung cancer.

Here's a link to a recent discussion about overcoming weight loss that may be helpful:
https://connect.mayoclinic.org/discussion/weight-loss-from-stage-4-lung-cnacer/
Interesting, your team is looking at adding chemo to the Tagrisso? Do you know yet what type of chemo you may be given?

@lls8000
I meet with my oncologist next week and will be discussing what kind of chemo and length of treatment. Will share once I learn.

@stevenh31 This worked for us after chemo, you can try it and see for gaining weight. Soak overnight in milk or water - 10 Almonds, 5 Walnuts, 5 Pecans, 1 tsp Pumpkin seeds, 1 tsp flax seeds, 1 tsp chia seeds, 2-3 dates, protein powder of your choice one scoop. Grind it in Magic bullet/blender next morning and drink. High protein and healthy way to gain.

Hello! I'm Jess..my boyfriend was diagnosed with stage 4 lung cancer almost one year ago. He slipped and fell on a patch of ice in February of last year and in March after an X-ray for fractured ribs we were called in to be told he had a big mass in his right lung and that he had stage 4 lung cancer. He is 51 yrs old...his lungs are also completely full of inumerable amounts of nodules they said literally hundreds of them...the cancer has spread to the other lung and in his lymphnodes in the middle as well. So chemo and immunotherapy started quickly after we found out and it was going well through the summer into the fall the cancer had not grown or spread. He only has one kidneyand this winter the chemo was attacking his kidney and it had to stopped...so just continuing with immunotherapy I believe keytruda? He's sicker seems like he has pneumonia type symptoms all the time sweating nauseous uncontrollable cough and extreme amounts of phlegm. The oncologist is agitated because sometimes he doesn't want to do treatment and because when he gets really sick and other people in the house have bad colds or flu type symptoms palliative care says go to the ER...then he gets reprimanded for doing so...isn't it his decision about the treatments and what he wants to do? We see the lung Dr Thursday and he's already been seeing palliative care the entire time so he wants to stop treatments and just control symptoms for awhile and see how it goes. His oncologist threatened to kick him out of being seen there because we had gone to urgent care, the ER and took advice from palliative care......that just seems so weird to me....anyone have thoughts on this....sorry so long I'm just kinda going through this just him and I and it's a lot! Thanks for reading❤️

Hi, I am Ann. I have just been diagnosed with neuroendocrine carcinoma of the lung and completed MRI and PET scan this week. I think the thoracic surgeon is recommending a lobectomy of the right upper lobe and adjacent lymph node. I am asymptomatic. No one has suggested a NET specialist - should I ask for a consult with one at this early stage?

@dunsmorej54 , I just want to give you a hug. It's hard enough to manage this disease, without this type of additional pressure and confusion from his care team. Keep in mind, I'm a patient too, with no clinical training or credentials. 🙂
- Do you know if he had any biomarker testing completed when he was diagnosed? Looking for EGFR, ALK, KRAS, etc? I was diagnosed at the age of 49 and learned that many people that are diagnosed at a young-ish age may have mutations that are driving the cancer. This can impact treatment. I'm 55 now.
- Is he able to request a different doctor at the same cancer center? Having a doctor on your side that believes in you, and that you believe in, is not just important, it's your right. My guess is that you aren't the only ones that have had an issue with this doc.
- Is your BF open to a second opinion from a different cancer center altogether? When I've had potential progression, I've had other oncology teams look at my case, and I've never regretted it or felt like it was a waste. Information can be lifesaving and it's helpful to have another perspective. Here's a link that can help find a site designated as a national cancer institute: https://www.cancer.gov/research/infrastructure/cancer-centers/find

Welcome Ann, @teal3127, I always feel that a consult with a specialist can't hurt. More info and more eyes on your case can only help! Have you found the NET group on Mayo Connect?
It will likely be helpful to you too: https://connect.mayoclinic.org/group/neuroendocrine-tumors-nets/

Hello!
My name is Diane.
Just got a lung cancer diagnosis.
Still going through testing. Had bronchoscpy and will have PET and brain scan this week. Then on Friday willsee Dr for plan of attack.
It's all so overwhelming at this point.

@dianelivingston47