Living with lung cancer - Introduce yourself & come say hi

Hi @margot69, so good to hear from you again. I was wondering about you. @karen43 and @lady1lake have experience with whole brain radiation therapy (WBR) for metastasized lung cancer. (https://connect.mayoclinic.org/discussion/small-cell-lung-cancer-1/)

Did your oncologist talk to you about dental care before starting WBR?

schmeeckle64, Thank you for your reply and I'm glad to hear you're seeing progress with your treatments! It's also encouraging to hear that you are not having any significant side effects from Keytruda. I believe the immunotherapies are much more forgiving than chemo, radiation and perhaps targeted therapies. The doctors say that my husband must do at least a small amount of chemo before he can have the immunotherapy (and also radiation) due to FDA rules. That may be the end of that because my husband does not want chemo at all. I'm not sure if the chemo and radiation are really an integral part of the 'cure' or effectiveness or if they just want consistency with their new drug trials. So many people enter immunotherapy or other treatments so beat up from chemo they can't distinguish the side effects of the chemo vs. the other treatments. That's where you have been so helpful to me....although it's a different drug than what my husband might use, immunotherapy sounds easier to tolerate and your sharing has helped me a great deal. Thank you so very much for taking time!!
Hugs

@2onlow8- Good morning. Boy, that's a tough one. I think that it might vary with everyone. Have you called them?

@2onlow8- Good morning. Oh boy, just what you don't need! Have they spoken with each other about what they are disagreeing about? May I ask what the difference between the two are?

Does anyone know if Medicare/aarp united healthcare pays for 3rd opinions? I’m getting conflicting advice between my local oncologist and my MD Anderson 2nd opinion oncologist. Both have been in agreement to this point in my treatments.

Hi Cindy! Hope your husband is feeling better. I have stage 4 lung cancer and as of right now, I don't have to do any chemo. We are just doing Keytruda (immune therapy). I had a CT scan done last Friday and the spots on my liver is gone and the spots on my lymph nodes are gone as well. The tumors on my lungs are shrinking as well. The immune therapy is working very well for me and I have absolutely no side effects. It takes about 30 minutes every 3 weeks. I had a molecular test done when I was first diagnosed and that is when they decided that no chemo and just immune therapy. I am happy to answer any questions if you have any. Blessings to you and your husband.

@merpreb Thanks, Merry! No inhalers at this point. And, I knew from my PA at Mayo that from the lung cancer perspective that not returning to smoking was the biggie and for exercise to focus on the cardio stuff, for the lungs. So, that makes sense that COPD would run the same tracks. Guess we can't change the past so need to "stay on the straight and narrow" going forward, huh? Lol.

I guess I haven't updated for a while. I have the Large Cell Neuroendocrine Lung Cancer. Had my last Chemo in April, Carbo/Etroposide. PET was stable. Two more treatments were cancelled as my blood work was staying too low. My Onc at Stanford wanted another PET in June and a repeat brain MRI. My local Onc was not going to do one. I had been receiving no treatment. PET showed progression. Brain MRI now shows several spots and whole brain radiation is recommended. I had been started on Abraxane and Keytruda, had one infusion. I am to start the WBR next week then resume the Infusions. Doctor said it woukd be too hard on me to do all at once. There is no treatment protocol for this cancer. Has anyone had WBR and treatments stopped until you were done with radiation? What side effects did you have?

Thank you. I like helping other if I can. Glad for your husband getting support. As for you, there are some places that take a sliding fee and moreover, some Mental health Professionals will charge whatever you pay for your insurance copay. Am retired from that work, but used to use a sliding scale, or ask for the copay. I preferred my clients to pay out of pocket as then their diagnosis (insurance required this) was not in any records and there was much more privacy that way. Anyway, I amn glad you find help here and wish you
and your husband the best.

seaspray
Thank you for the feedback on your experience, it helps. I did go to the Inspire site and will spend more time there delving into the posts and information. It certainly does have a more complete list of side effects (the site for Infinzi lists about 2 common side effects and makes it sound like a cake walk, perhaps not).
I appreciate your help!! I'll keep researching and sharing with my husband and we'll see what he decides to do.
Hugs to you!