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Unanswered questions: immunotherapy for lung cancer

Posted by frandy @frandy, Nov 21 10:23am

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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frandy | @frandy | 4 days ago
In reply to @mgamga2003 "I was diagnosed with Stage 3 unresectable squamous NSLC in later 2023 After 6-week treatments of..." + (show)
@mgamga2003

I was diagnosed with Stage 3 unresectable squamous NSLC in later 2023 After 6-week treatments of radiation (5/week) and chemo (1/month), I was prescribed and am almost done with 1 year of durvalumab (Imfimzi) infusions (2/month)

I have not had any major side effects except some fatigue and shortness of breath. I did get a case of pneumonitis early on in the treatments but the doctor thinks this was from the radiation.

So far the treatments seem to be working but too early to tell. I get CTs every 3 mos

Hope this helps

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Yes this helps; eases my stress and gives me hope. Thank you and I hope your CT scans continue to come back clear. Wish you the best. Please let me know how you do.

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Mentor
Lisa, Volunteer Mentor | @lls8000 | 4 days ago
In reply to @frandy "UPDATE Since this is the last week of chemo and radiation, I will see the new..." + (show)
@frandy

UPDATE
Since this is the last week of chemo and radiation, I will see the new doctor again in 6 weeks. During that time I will have labs in 4 weeks and during the 2 weeks following I will have a MRI on my brain. But what I’m concerned and undecided about is the immunotherapy and the possibility of brain radiation. The medicine that will be used for the immunotherapy is Durvalumab Injection (IV). Dr. Farooq stated I would “not” have any of the side affects that I had from the chemo (paper work on the medication contradicts this) along with the research on Mayo Clinic. Doctor said during our visit yesterday said the side affects are extremely rare. I’m concerned that this isn’t the true case. I have major problems just with just the chemo (2 hospital stays and 4 ER visits). Doc said I would have this therapy once a month for 2 years. I don’t want to worry about the brain radiation since it’s not definite yet but can’t help but worry. I don’t think I would go through that if it comes back I need it. It would depend on where the cancer is and how bad.
I’m hoping for any feedback on the Durvalumab. Doc said that is the “only” medication for my type of cancer. I’m wondering just how rare the side affects and damage to organs really are. They already have this scheduled to start on January 6, 2025.
Any feedback back will be greatly appreciated. Thank you, Frandy

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@frandy, I'm not sure that I'm much help other than to let you know that you are not alone. Treatment decisions like these are difficult.
Here are a few comments, from @nonobaddog about Durvalumab/Imfinzi that you may not have seen. It looks like they did experience a thyroid issue but also had success in treatment.
https://connect.mayoclinic.org/comment/810515/
https://connect.mayoclinic.org/comment/860477/

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nonobaddog | @nonobaddog | 4 days ago
In reply to @frandy "Yes this helps; eases my stress and gives me hope. Thank you and I hope your..." + (show)
@frandy

Yes this helps; eases my stress and gives me hope. Thank you and I hope your CT scans continue to come back clear. Wish you the best. Please let me know how you do.

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Hi frandy,
Here is a quick summary of my journey. I have stage 3B non-small cell lung cancer(NSCLC) and I received proton beam radiation (30 times over 6 weeks) and concurrent chemotherapy with Paclitaxel and Carboplatin (1 infusion per week for the same 6 weeks). This was back in the spring of 2022. After that I had a year of immunotherapy with Durvalumab/Imfinzi (1 infusion per 28 days for 13 infusions).
After the end of immunotherapy things were looking good. Nothing active in my lungs. I did need oxygen at home only when I was active. But it was a good thing I had it because about three months after the end of immunotherapy I started having trouble breathing. It came on pretty fast and I couldn't get enough oxygen. Had to go to the ER because my fingers and toes were blue. and I was desperately sucking on my oxygen machine when my son came and took me to the ER. I ended up in intensive care for most of my 21 day stay in the hospital. I was delirious for several days and it didn't look good but I slowly came out of it. The duvalumab caused bad inflammation in my heart (myocarditis), lungs (pneumonitis) and guts (enteritis). They fought this inflammation with prednisone, lots of prednisone, which causes it's own problems.
Not everybody gets this inflammation but you are so very right to ask about side effects. The durvalumab probably helped me get rid of any cancer that may or may not have been left over after radiation and chemo. But it definitely caused big problems in my life so there is good and bad that you have to weigh and decide. I had to go back in the hospital for another 14 days with breathing and heart issues. I got more prednisone then, the most I got was 1,000 mg methyl prednisolone per day which is the IV form of prednisone. That is a lot. It took months of tapering down from that dose to 6 mg per day which I will have to take forever because my adrenal gland shut down because of all the prednisone. I have had diarrhea for over a year now from the enteritis but it is slowly getting better and I can actually go places now. For a while it was very watery and frequent and one problem with that is all the oral medications I was taking (a lot) were just being flushed through me along with my electrolytes. I had to have several infusions to help with that so my irregular heart beat would improve. I still have breathing problems from ongoing pneumonitis. I need oxygen 24/7 now so it is more difficult to go places even with my portable oxygen concentrators. I got osteoporosis from all the prednisone and I got compression fractures in my nine lowest vertebrae, from T10 all the way through L6. I had to have three surgeries on those to strengthen them. This was very painful for two to three months but now I am able to walk again with a cane or walker and I am back in physical therapy to help with that.
Yes, I had a lot of side effects from Durvalumab and they changed my life. But side effects are unpredictable, you might not have any. However you certainly have every right to know about them. I happened to have a lot in my opinion but I also have to consider that I get CT scans every 3 months and I still do not have cancer back. I think there is a good chance Durvalumab helped with that. That is very important.
You are faced with a choice and it is not an easy choice but you will make the choice that is best for you. You do have to get some kind of treatment for the cancer, that much is critical.
I sure wish you the best during your treatment and long after.

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abob | @abob | 3 days ago
In reply to @frandy "PML, thank you for your advice and kind words. Just seeing the warning side affects on..." + (show)
@frandy

PML, thank you for your advice and kind words. Just seeing the warning side affects on TV about Keytruda, I would not take it. The other I would have to research. In the thousands per infusion….. wow. I don’t know if my insurance will pay for it. Maybe that is why the doctor got so irate when I asked him questions about it. Well, will definitely have to do my homework and make some decisions. Thank you for the information.

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My husband has had 10 infusions of Keytruda. He has been fine, except for some minor fatigue and gi issues. Pls remember that those small print reactions are rare. Pls keep us posted on how you are doing,

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