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Unanswered questions: autoimmune therapy for lung cancer
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.
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Contact the Helpline at Go2 Foundation. 1-800-298-2436
They have researchers on staff to answer questions like this.
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2 ReactionsHi Frandy,
I'm sorry that you are going through all of this. That must be hard for you! My husband had lung cancer. They gave him an autoimmune therapy drug called Keytruda. He reacted badly to it and almost died. He got Pancreatitis which is a known side effect of Keytruda. It was because of our very good primary doctor and prayers, that he got to the right specialist and after a long battle, my husband was fine. However, he said that he would never have another Keytruda treatment. The doctors didn't like that decision but it was my husband's body and money! (Keytruda cost $25,000 per infusion!) He received two infusions per month. My husband died in July but we had 14 wonderful years together since his cancer diagnosis. I don't think we would have had that time if he had continued on Keytruda.
I would suggest doing as much research on autoimmune therapy drugs as you can before you make a decision.
The Mayo Clinic is one of the best places to do research. Google will also give you a variety of websites to investigate. Don't just take what happened to my husband as the only result. Everyone is different when it comes to medication. Once you have a lot of information, then you can decide what is best for you.
That's not right for the doctor to yell at you! Doesn't he realize that you are the sick patient? You don't yell at sick people! You may want to look for a new doctor. Remember, it's your money and your body. Your doctor works for you. Also take some time to let your body recuperate from the chemotherapy and radiation sessions. And, for yourself. You probably need a break.
Pray about it and God will direct you. You may feel that you are making a life or death decision but it's only God who makes that decision. Just talk to God like he's your best friend and he is. Put everything in his hands and you just relax and enjoy life!
I'll remember you in my prayers.
PML
@frandy, I'm so sorry you must go through this experience. As if a lung cancer diagnosis isn't hard enough as it is! Please know that there are better oncologists out there, including those who understand they are treating people, not just the disease.
I'm a 6-year survivor of the EGFR mutation, the last 4 years at stage 4. I moved across the country before my second round of cancer, and I'll tell you what my first oncologist told me when I was looking for one in a new town, "Your primary doctor and your oncologist need to be your friends. You need to trust them. On the other hand, you only need to care if your specialist is good at what they do because you will probably never see them again." If that's not your relationship with your oncologist, change doctors. While I agree this can be a pain in the you-know-where, people are surviving lung cancer longer than ever before, which means this could be a long-term relationship for you.
It sounds like you are asking the right questions and asking for the correct information. Those are reasonable requests for someone in your position. There's no need to get upset with a doctor who is solely focused on his own agenda. Just move on. I sincerely wish you all the best. New treatments for small cell LC have been approved just this year, so you have every reason to hope for the best!
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1 ReactionThank God you had good doctors and thank you for sharing their advice. I may need to request another doctor but there are only three there and all on the same team. I’m going to the best clinic in our city. But the communication may be better with one of the others. I will be seriously considering this. Thank you so much.
What the doctor prescribes will be determined by which drug your insurance company will cover. Imfinzi, Opdivo, Keytruda, and Tecentriq have all been approved for use in extensive stage SCLC.
If the group or hospital has a “patient experience” office, talk to them about the doctor’s behavior. Unacceptable that he would yell at a patient.
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?