My Immunotherapy Experience

CarrieN Member Posts: 11

It's been awhile since I last wrote. In my last postings, I was trying to determine which hospital to use and which treatment to get on. I had been using MD Anderson,  but after they misdiagnosed my stage of cancer, I was hesitant to use them again. After meeting with several other doctors with different hospitals in the Houston medical center,  I decided to stay at MD Anderson as they were the only ones able to offer a different option other than standard chemo, which I had already been on. 

MD Anderson put me on a clinical trial where I received 2 immunotherapy drugs, Nivolumab (opdivo) and Ipilimumab (yervoy), once every 3 weeks for 4 treatments. After that,I was scheduled to be on just nivolumab once every 2 weeks for continuous maintenance.  

After my first treatment,  I felt pretty well. It wasn't until my second treatment that I really started feeling the side effects - severe nausea and occasional vomiting, severe body aches, extreme fatigue, low grade fever, bad dry mouth, rash. I was still going to the office to work (I'm not one to sit at home), but only able to work short days. 

By the time December hit, I was in really bad shape. Same side effects, just worse. Still working, but having to get rides to work because my fatigue is so bad I have trouble keeping my eyes open and there is no way I can drive at this point. Side effects of treatment are officially now way worse than the side effects I had with chemo and radiation.  But, my scans are showing that my nodules are shrinking,  so treatment is working! Definitely incentive to push on!

My last treatment with both immunotherapy drugs was Dec 28th. Right before they started my IV, my Dr. called and said my pancreas and liver enzymes are really high  but he wants me to go ahead with the treatment.  Well, that treatment just caused my enzymes to elevate even more and caused me to get really sick (wish they would have told me this was a possibility).  I was put on high dose of iv steroids, fluids and antibiotics. I felt awful and was loosing a lot of weight.  Treatment was put on hold. They switched me from iv steroids to oral steroids and started winging me off of them. My enzyme levels were improving but as soon as I was off the steroids,  my levels shot back up. They eventually started going down on their own, but still not low enough for me to continue with treatment. 

In February,  I started running high fever- 102+. My husband took me to the ER and they said it looked like the start of pneumonia and sent me home with antibiotics.  Not too long after I finished my antibiotics,  I had an appointment with my main oncologist and told him I was still running high fever.  He instructed me to just take ibuprofen when my fever starts to spike and just ride it out.  The next two weeks I continued to run high fever, sometimes 103+. I knew something was wrong. I continued to contact my medical team and they continued to tell me to ride it out.  Finally,  I called again and demanded another chest xray for that day.  At this point,  I can barely walk 3 feet without getting out of breath.  

The chest xrays showed severe inflammation in my lungs. After seeing the xray,  my Dr ordered me a CT scan for the next day and sent me to a pulmonary dr the same say. After my pulmonary tests came back, they admitted me to the hospital and I was diagnosed with severe pneumonitis due to toxicity of the treatment. I was once again placed on IV steroids and also IV antibiotics and was continuously on oxygen.  After a week in the hospital I went home, but was still on oxygen, steroids and antibiotics.  

I'm doing better now,  but my lungs are still not back to normal. I am off of oxygen,  but still on steroids and antibiotics.  

They officially took me off of the trial/off of immunotherapy for good.  My Dr said that because the immune system has memory,  if they put me back on treatment,  the immunotherapy will most likely attack my lungs again and it would be life threatening.  

I had a scan a couple of weeks ago but they were unable to confirm status of the nodules in my lungs due to the inflammation.  I am staying optimistic and hoping they can't see them because they're gone! :)

This posting is merely to share my journey of my immunotherapy and hope that it will be beneficial to anyone considering the treatment.  I feel like I was unprepared for the side effects, under the impression that they would be minimal.  While I know no two people are affected the same way, had I been more aware of what others experienced,  I think I could have mentally prepared myself better. 



  • paul61
    paul61 Member Posts: 1,388 Member
    Thank You for posting this valuable information


    I am so sorry to hear that your immunotherapy treatments had such serious adverse side effects.

    Thank you for posting this information. Clearly the lesson here is that you have to keep demanding your medical team take your side effect symptoms seriously in order to get appropriate help. I am disappointed to hear that, given the known immune system overactivity risks of many immunotherapy drugs, they did not take your issues with fatigue and shortness of breath seriously immediately.

    I hope when the irritation in your lungs ultimately clears, there will be nothing left to see in terms of concerns.

    Again, thanks for posting, so many people don’t demand attention to their side effects. They just think “Well this is cancer treatment, it is supposed to be difficult”

    Best Regards,

    Paul Adams

    McCormick, South Carolina
    DX 10/2009 T2N1M0  Stage IIB - Ivor Lewis Surgery  12/3/2009 - Post Surgery Chemotherapy 2/2009 – 6/2009
    Cisplatin, Epirubicin, 5 FU - Eight Year Survivor

  • staceycorry
    staceycorry Member Posts: 14
    Thank you for sharing this


    Wow, I thought that treatment would be easier.  I guess not.  Thank you so much for sharing this.


  • RJL2000
    RJL2000 Member Posts: 1
    edited June 2018 #4
    Thanks much for your update

    Thanks much for your update.  The fact that your cancer stage was misdiagnosed at a prestigious institution like M.D.Anderson is a reminder that we need to be attentive and alert at all stages of our journey, no matter where and by whom we are being treated.

    Here's a note fabout immunotherapy and also about antibiotics that may be relevant to your treatment.  It comes from the moderator of the colon-cancer support group at  She's a health-care professional.

    Date:    Sat, 16 Jun 2018 23:14:31 -0500
    From: Pam McAllister <[email protected]>
    Subject: Re: Antibiotics can impair immune system and immunotherapy

    Thanks Roy,

    This is an important observation. In the future immunotherapies may
    become more common in colon cancer and this will become more
    significant. At the present time only colon cancers with microsatellite
    instability  respond to immunotherapies. This is a small fraction of
    stage IV tumors but eventually, we hope, a way will be found to alter
    the MSS tumors so they too will respond. I suspect you may be interested
    in a discussion of immunotherapies in colon cancer at:


    Antibiotics may impact cancer treatment efficacy

    Antibiotics caution for cancer patients