Living with lung cancer - Introduce yourself & come say hi

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.

@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?

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

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

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/?pg=6#comment-263340)

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

@merpreb I have not had this frank discussion with either yet as I've just noticed the problem after my regular 3 week bloodwork/Dr. Consult/Infusion yesterday. In typing up my notes afterwards I see a pattern wherein my 2nd-opinion-Dr suggests a course of treatment that my primary oncologist immediately overrides, then later arrives at the same conclusion and this has been very successful twice during my treatments which have included: simultaneous Cisplatin and radiation for 5 weeks one year ago. Followed with Imfinzi immunotherapy which allowed my cancer to spread in 2 months to lung 2 as well as into blood stream, lymph nodes. (I am of the 2% of Imfinzi patients that this happens to apparently. Lucky me.) Stage 3 is now at Stage 4 NSCLC. Another 2 months of Taxotere chemo followed that didn't arrest growth either. In addition to PET scans every 3 months, my CEA counts in my regular blood tests (every 3 weeks prior to infusions) have proven to be very accurate in tracking my successes and failures in treatment. Apparently this measurement isn't commonly used for lung cancer, but works precisely well for me. At this point I brought in my 2nd opinion oncologist who suggested I get Foundation One testing. Among other things this showed I had PDL of 70. He suggested I switch chemo to Alimta and my local onc agreed. This brought my CEA number way back down and PET scan showed great promise after 6 infusions. He also told me that "when Alimta stopped being effective" (as he knew it would apparently) we should ADD Keytruda simultaneously to Alimta. And that's where we are yesterday. CEA number has started slowly back up. My primary oncologist wants to get me into a clinical trial suggested by Foundation One and that is being more thoroughly investigated to see if I qualify and Keytruda will be ordered and processed through my insurance before I get it in 3 weeks. My primary is not sure about adding it to Alimta and is concerned about overwhelming side effects. In typing this to you just now I think I have answered my own question/concerns and should be glad that my primary is open to my secondary's suggestions and is thoughtfully concerned with side effects on me. So I guess I'll see how this all transpires in a few weeks with fingers crossed that Alimta can keep the wolves at bay in the meantime. Very grateful to have 2 good doctors who try to solve these mysteries and haven't given up on me.

Hi Merry,
I will check out that link, thank you. I am not having a good week, feeling sicker every day since tgat Infusuon but not sure if it is the cancer, chemo or Keytruda.
No, they did not mention dental care but I try to watch that closely. Due to chronic dry mouth and throat for years. I had $$$$ of dental work last year. Great!! My Oncologist tells me next to nothing.

@margot69- I know, the chemo and all the other crap is wreaking havoc on your health. I'm sorry. If there's a change in how you're feeling it's most likely that last thing that you had.
If you have the strength it's beyond time to sit your oncologist down and tell him that you don't feel like you are getting enough information from him. That you know that you are I'll but you need to know the truth, all of it
Can you do that?

He is not good about answering questions on line at all. I can ask him questions when I see him and he will answer but does not really "discuss" things. Wakelee is good about answering questions but she is not technically my treating doctor. Makes it more complicated as there is no real treatment for my cancer.

Hey new here, but been reading a lot of the post that arre here. Im an 80 year old wih lung cancer. Kinda funny how it has all come about. Last Feb, I fell on Ice and hurt my shoulder. I had let it go forawhile until I finally went to the Doctor to have it checked. They most certainly knew that I had rotator cuff. But, an MRI was ordered. Turns out no Rotator cuff, but rather a tumor Went to a local radiation oncologist and then from there I went to Mayo. What A GREAT experience that was. At any rate, I just started Immune therapy once every three weeks. After my first treatment, there seems to be no side affects. Dont know how long that wll last.Right now I feel very good.
Thanks for you forum
Merle