Unanswered questions: immunotherapy for lung cancer

Posted by frandy @frandy, Nov 21, 2024

I'm on the end of my Chemo & Radiation treatment for small cell lung cancer. My cancer doctor mentioned a one year autoimmune therapy but refused to answer any questions about it until the time comes. To the point that he yelled at me for asking the questions. I am so confused and frustrated. This entire cancer experience is new to me and even though I requested all my risks, systems, procedures, everything explained to me in the very beginning, I learned quickly, my requests were ignored. I'm seeing the top cancer doctors in my area. But, I'm looking at making a decision on to live or die. Please, any information will be greatly appreciated.

Interested in more discussions like this? Go to the Lung Cancer Support Group.

@nanajan26

I was diagnosed with stage 3a havoc which was not resectable due to lymph node location. Had 6 chemo & 30 radiation treatments that went very well.No side effects at all. Started me on Tagrisso and after 2 months developed terrible side effects and ended up in hospital with pneumonitis. Dr said good thing ! Came in. See oncologist Thursday and have no idea what's going to be next. Anyone else have this happen?

Jump to this post

Welcome to Mayo Connect @nanajan26, The targeted therapy medications (like Tagrisso) can be amazing when they work, but for some people they come with some scary reactions and side-effects. We'll be interested to hear what your oncologist has to say later this week. Are you feeling better off the drug, and are your lungs are returning to normal?

REPLY
@lls8000

Welcome to Mayo Connect @nanajan26, The targeted therapy medications (like Tagrisso) can be amazing when they work, but for some people they come with some scary reactions and side-effects. We'll be interested to hear what your oncologist has to say later this week. Are you feeling better off the drug, and are your lungs are returning to normal?

Jump to this post

Yes, I don't have any of the side effects & my pulse ox has been very good. Anxious about the future

REPLY
@lls8000

Hi @frandy , Welcome to Mayo Connect. Lung cancer treatments are complicated, and thankfully that means that the treatments have advanced and that we have options. Having a doctor that can help us understand those options is vital. The doctor patient relationship should be a partnership, and sometimes it takes a bit to find a good partner.
I'm assuming that you've felt this way after seeing this provider more than once? Sometimes they can have bad days too. If this is a repeated behavior, and you aren't getting what you need then you may need to request a different doctor.
You mentioned 'autoimmune therapy'. I think you likely mean Immunotherapy which basically trains your own immune system to find and fight remaining cancer cells. Here's a link for more info: https://www.lung.org/lung-health-diseases/lung-disease-lookup/lung-cancer/treatment/types-of-treatment/immunotherapy
How long ago were you diagnosed? Are you starting to get your energy back after the chemo and radiation?

Jump to this post

Hi Lisa,
I did change doctors but they are all in the same group and I got basically the same responses with respect. I’m still having some bad days even though it’s been a month since my treatment ended. I think it’s more from the radiation and the internal radiation burns.
My lack of trust in the doctors and what I read and heard about the med they have to use for the immunotherapy, I won’t do it. If I went through it for the two years they want, it will give me 56+ months/approx. three years (maybe more) and I’m already 70 and it’s very difficult to get around.
I have to make a definite decision within the next few days.
Thank you very much for the info and feedback.

REPLY
@frandy

Hi Lisa,
I did change doctors but they are all in the same group and I got basically the same responses with respect. I’m still having some bad days even though it’s been a month since my treatment ended. I think it’s more from the radiation and the internal radiation burns.
My lack of trust in the doctors and what I read and heard about the med they have to use for the immunotherapy, I won’t do it. If I went through it for the two years they want, it will give me 56+ months/approx. three years (maybe more) and I’m already 70 and it’s very difficult to get around.
I have to make a definite decision within the next few days.
Thank you very much for the info and feedback.

Jump to this post

PS. Lisa
Yes I had seen that first doctor several times before he acted up. A woman who had been a nurse for 33 years told me she witnessed this doctor yelling at a 75 year old woman because she decided against chemo. But he’s a high rated doctor in his field.

REPLY
Please sign in or register to post a reply.