Durbalumab (Imfinzi)

[Getoutofme1239]

I’m 6+wks postop having had aggressive radiation and chemo 6 weeks prior to a month break. Surgeon told me he got 99% of cancer because they found 1 lymph node out of 21removed with live cancer cells. Stagellla nsclc which most people are not given the option of surgery. Recovery has been more difficult each day which baffled me. July 10 th everything got even worse as far as breathing, coughing horrribly and could catch my breath,, Oncologist called me to set up my follow up and immediately told me that I should come in to their Er for CT scan . She was worried I may have had a PE or phynomia . Turns out I had neither but had a large amount of fluid around my heart that was crushing ventricles . I was hospitalized and they tapped the sac to extract the fluid. They said I would’ve sedated with twighlight and would maybe feel pressure and not pain. Turns out they would not let me eat or drink for 28 hours at which time they finally took me up 9 pm . They performed the procedure with me wide awake . Extremely scared and painful. I cursed like a sailer while on the table. Why did they lie to me? Anyway they are still not sure what caused this fluid around my heart. All labs have been coming back negative. Waiting on others that were sent away. This explains my lack of healing. I was told it’s not common for this to occur after surgery. Anyway yesterday my Oncologist explained the option of Immunothetapy which would be every 2 weeks for one year - 1 hour of infusion . I’m not sure if I should do this because the percentage of me having any cancer in me presently is 1% . This is what they treat patients with same cancer and stage as me but who were not candidates for surgery. I looked over the side effects and they are similar to the ones having combo chemotherapy . My question is , Do the benefits outweigh the side effects in my case? Any input would be greatly appreciated . Ty

[Denzie Moderator Volunteer]

That’s a very scary experience you had. Are you being treated a a smaller regional hospital versus a teaching hospital? They should have informed you of any reason for postponing your pericardial window for so long. Also, please know that the anesthetic used in your surgery may have triggered the build up of fluid around your heart. It’s not a common side effect but when mine occurred my surgeon said it might have been the cause. There’s no way to know if the other tests come through clear.

Try to get a second opinion on your immunotherapy. I’m not aware of anyone having the neoadjuvant chemo then being offered an immunotherapy Drug.

The manufacturers website says it’s for use where no surgery is possible so I’m a bit stymied. Perhaps what he talked about was a clinical trial.

But I’m just a patient who tries to stay on top of these things but with so many new drugs it’s hard.

[Getoutofme1239 in reply to Denzie]

This is why I’m conflicted ! I’ve been told numerous times that it’s a fact that this cancer type (Squamous cell carcinoma) likes to come back and is sneaky about it.. hence the immunotherapy unveils it and kills it but I would not know either way if it came back. I’m 53 years old other than spinal issues from an accident many years ago, I was in excellent health until this cancer which was found accidentally, changed that. I’ve had all of my treatment , care and surgery through HUP University of Penn ( Perelman center for advanced cancer) 6 th top ranked hospital in the country . I’m fortunate to be a 10 minute drive away. I have been trying to weigh the pros and cons. I need to have additional echo cardio gram August 8 th, I tell everyone family and friends that I’m feeling Ok but the truth is, I have not felt good since I had lobectomy, I tell my team of Drs how I really feel but why worry everyone else? I want quality more than quantity of life.. if I had to choose. My Oncologist seems to think this option is a good one for me, I’m not convinced . Thanks for your input , if you have anything to add, I welcome all feedback 🤗🙏

[Denzie Moderator Volunteer in reply to Getoutofme1239]

Based on what you’ve said I would take the risk and do the immunotherapy. That said I would also check with the oncologists who monitor the boards at Cancergrace.org.

If you do check with them please let us know what you decide and give updates. Your info will help others who come here looking for it.

[Getoutofme1239 in reply to Denzie]

This is the only site I’ve been sharing with, Only because most all advice or input given to me comes from family has a friend who knows someone ewho either had lung cancer surngjery at stages l thru ll who hjjad surgery and has been cancer free for 20+ years or someone who has been struck with breast cancer or lymphoma and so on and they seem to go on to live productive normal lives with regular check ups and quarterly scans,,,, what I’m trying to say is ,, this site was what I was looking for , meaning, I wanted to read and inform myself with information from people who are going through or who have gone through the same as me,, everyone’s situation is different of course but I have found this site to be most helpful and hopeful.. I’m not tech savvy at all,, So , I may need to be walked through this haha. I go to the cancergrace.org site and become a member?? Do they help you and direct you to the info I’d be looking for ? Thanks again for your help.. I appreciate all of it God Bless You 🙏🙏🏻🙏🏽🙏🏼🤗🤗

[Chestercat]

Hello,

I'm week 7 of this drug , 3rd infusion 4th today , minimal side effects. Although I'm stage 4 with aggressive advanced cancer and always tired anyway . I would wait to heal and do another scan as a baseline before starting this program . Just my thoughts .Best wishes and prayers for total healing to you .

[Getoutofme1239 in reply to Chestercat]

I was thinking about doing just that however I’m not sure if that’s an option yet, I need to ask. Thank you so much ,, I’m happy to hear their are minimal side effects! 🙏🤗