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3Hi everyone! My dad was initially diagnosed in 2011 with stage IB lung cancer, which was resected. Totally fine until April 2016, when he underwent CT scan for his heart and found to have 3 enlarged lymph nodes. Sure enough, stage IIIB adeno. Underwent chemoXRT (standard side effects), which worked great but was unfortunately too late. The cancer had spread with innumerous mets to the liver, possible bony mets, and possible lung involvement. Essentially, he was asymptomatic from the cancer. He did the genetic testing (via liquid biopsy) and found to have a few mutations, but none with targeted tx for lung cancer. He did have the BRCA1 and something else found in ovarian and breast cancer. Doc recommended opdivo. A few days after the first tx, he became substantially more tired, with some increased queasiness, and change in taste. He was having these side effects from the chemoXRT over the summer, but seems to have gotten substantially worse. We are trying to figure out if it's the Opdivo, or if it's the cancer. My logic tells me that the immune system is in overdrive right now, which causes a lot of these symptoms. But I know liver mets can also cause the same symptoms. Also, I know opdivo has the pseudoprogression, where things look worse before they look better. I would appreciate any and all anecdotal stories!!

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If no one checks in soon with experience on this you might ask the oncologists who moniter the boards at cancergrace.org.

Posts: 3
Joined: Dec 2016

Hello Robin

I have been taking Opdivo infusions since mid April.  I was tired before I started, and tired after.  Since I began Opdivo after having had Gamma Knife, chemo, and a lobectomy, it's hard to say what effect Opdivo had on my energy level.  I did have pseudoprogression you mentioned (didn't know there was a word for it - thanks!).  One new tumor appeared right after starting, and was gone completely two weeks later.  I am currently am in NED, and my oncologist still has me planned out for two more years of Opdivo.  The possible side effects have me thinking, but when you think about, no cancer treatment is without risk.  

On a side note, for a long while, I just accepted my fatigue, figuring it was better than nausea and pain.  But after awhile, I started wondering what the point was in surviving if I spent most of my days in bed or on the sofa.  I asked my oncologist if she had any solutions, and she prescribed Adderol.  Have to admit I have mixed feelings about taking a stimulant on a regular basis, but not enough to stop enjoying the vertical life.

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My husband also has had gamma knife and for his brain mets. my question to you is, did your doctor have you on decadron/dexamethsone steroids for the brain? as of right now he cant do the Opdivo due to having to increase the steriods to 4mg and we are so upset. this is probably his last line of treatment.

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Joined: Sep 2017

Hi All, my first time on this site.  I have had 3 rounds of Opdivo, the first one was with Yervoy.  I will get Yervoy and Opdivo again on 9/22.  After my CT scan.  I have been feeling very good except for the constant coughing but over the last 2 days since my infusion on 9/8 i have hardly coughed.  i have metastatic lung cancer right lower lobe and to the spine.  i am not in pain, except for the coughing which does hurt my chest and back, so i take a hydrocodone and it stops the pain in its track. i have only taken 1 a week. I pray this course of treatment will work for me, and others who are on it.  I started out in Jan with carboplatin and alimpta after 4 rounds, only on alimpta ( and please if anyone has tried this drug, get into the lilly program, your copay would be about $25.00) after 4 rounds of alimpta, the cancer which had shrunk by 30% started to grow, hense, i got into the clinical trial of opdivo and yervoy at UCLA in Santa Monica.  I went on Medical leave 8/28 not use it it at all, and taking it easy since my treatments are now every other week.  I can update the more i know to help someone else, but stay strong, know that everything, good or bad is all for the Glory of GOD. 


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Joined: Oct 2014

Been on opdivo for 14 month no new growth or movement in 5 scans yah

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Joined: Sep 2017

What about now?  How long will you be on the opdivo? 

Thank you for sharing

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Joined: Oct 2017

Had the same 4 rounds of Opdive and felt no side effects whatever until a month after the last infusion. Prior to the Opdivo i had 3 cyberknife sessions on a left lung spot 12mm.

I started to get a pain in my side and couldnt sleep on my left side and also started to get a very dry cough. I had an xray and the doc told me I had some pneumonitis which is number 1 on the Opdivo side effects list. He said I had some pneumonia in the right side and plerisy in the left side. They drained me of 1.6 liters of pleura nas found no cancer cells in it. He put me on Amoxicillin and Prednisone to help with the infection and inflamation. i felt better for a while but a month later I was still having breathing difficulties and very low energy. Last week I had another 2.4 liters of fluid drained from my left pleura and still no cancer cells found. I am sure all these issues are related to the Opdivo, I am feeling much better this week but will have a biopsy of some nodules on the pleura to see if there is cancer present. I dont believe they will find any and I think the Opdivo was and still is working overtime in my system. We need to find out the root cause so we can get back on Chemo to prevent any mets as I have been of anythin for 3 months and they are concerned about it popping up elsewhere.

I think it is worth the issues if it gets rid of the cancer but I haven't got that far to know if it was successful or not.

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