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Anemia question
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Anemia question

› Forums › General Melanoma Community › Anemia question

  • Post
    • November 25, 2018 at 5:42 pm
    SRVilly
    Participant

      Hello all!

      I hope you all had a wonderful Thanksgiving and are enjoying the holiday season.  

      A little back story…I was dx in Dec. of 2017 with Stage 4 with mets to Liver.  I started bi-weekly treatment of Opdivo only in Jan. 2018 (Opdivo only due to history of coliits).  I have had little to no side effects (except for my thyroid taking a dump in June), and I have had a complete resolution of all liver mets in my last 3 PET scans. However, about a month ago my Red blood cell count and Hemoglobin have been taking a nose dive. I've been on Iron pills since and my onc ordered an endoscopy and colonoscopy for last week.  The GI Dr. said my stomach was clear, with no signs of ulcers, and my colon was clear with no signs of active colitis. He took some biopsies just to check if there was any microsopic signs, but he didn't think the anemia was due to anything stomach or colon related. I have another PET planned for Dec. 14th to take another look around.

      I have been reading about side effects of Opdivo and anemia is not a well documented side effect.  I was wondering if anyone has had any anemia issues due to the opdivo and what solutions helped resolve the issue.  I have an appt and infusion (if counts are back up) this week and I know we will go over this, but I always like to be a little informed if there are any issues before we meet.

      As always, thank you so much for your help and well wishes . This forum is an invaluable resourse that I rely on daly.

      Have a wonderful week.

      SRVilly

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    • Replies
        • November 25, 2018 at 8:15 pm
        Scooby123
        Participant
          Hi SRVilly,
          I can give you my experience with anemia. I am on keydruda and in March I started with low HB count. Had 3 blood infusions was on iron tablets too. Had scans and colonoscopy too with all signs clear. I started getting pains which did go to doctors who told me to take busacpan. Anyway did not felt helpt me at all. Took myself to hospital and two days later vomating and could not stop. I had another scan I had a blockage 3cm tumour in small bowel which was not picked up. When I asked how could you miss it I was told it was growing behind the bowel so scans looked normal. Hope you get it sorted least they doing pet scan.
          SCOOBY x
            • November 25, 2018 at 11:58 pm
            SRVilly
            Participant

              Thanks Scooby! 

              I appreciate the feedback. I’m looking forward to talking to the Doc this week and getting this figured out. 

              SRV

            • November 26, 2018 at 3:04 pm
            cancersnewnormal
            Participant

              I had the same issues with Keytruda. My primary care doc put me on iron pills. They made me nauseous, so I stopped taking them and at my next oncology appointment 3 weeks later, I asked my onc if he could have my blood iron levels tested. We tested it just prior to my next follow up appointment and infusion (3 weeks)….. iron levels were fine. The anemia was assumed to be caused by "inflammatory response"… in other words an autoimmune issue. The other possibility was low B12 (pernicious anemia). These anti-pd1 drugs mess with the immune system in different places in each of us. As mentioned, it seems that anemia is going by as a rather unmentioned adverse side effect. Some patients have had B12 injections resolve this issue. I was able to get by with supplements. I started off at 2000 mcg per day, but since stoppage of Keytruda (July 2016), I have found that I'm still doing well at only 1000 mcg per day now. 

              • November 26, 2018 at 3:46 pm
              sing123
              Participant

                Hi there. I am on Opdivo and had anemia early on. I started on iron pills and then went to just B12 as a supplement and added red meat to my diet (it is the best food source of heme protein which is the more easily absorbable iron). 

                By the next month after testing, I tested in the normal range. 

                Best of luck to you!

                Cindy

                • November 28, 2018 at 10:57 pm
                BrianP
                Participant

                  Hey SRVilly,

                  Have you had a test for blood in the stool?  Back in 2013 I was NED following surgery for a stage III diagnosis.  Started getting anemic.  Doctor recommended a test for blood in my stool.  Came back positive which then led to a battery of scans and scopes.  It can be tough to find mets in the GI tract.  Eventually they found through a pill endoscopy that I had mets in my small intestines.  A pill endoscopy involved swallowing a pill with a camera that takes pics through the whole tract.  I'm hoping you are just experiencing a side effect from Opdivo but just wanted to tell you about my experience.

                  Brian 

                    • November 29, 2018 at 7:55 pm
                    SRVilly
                    Participant

                      Hi Brian,

                      Thanks for the reply.  I did have that blood test and it was positive.  I met with my Onc today and went over all the biopsies from colonoscopy.  All were clear so that is good.  My Red Blood cell count and Hemoglobin were still low, but were steady so she let me get my infusion.  I am also scheduled for the pill endoscopy in a couple weeks. Gonna be a busy December!!

                      Thanks again for the reply.  Have a great weekend.

                      SRV

                      • March 2, 2019 at 7:00 am
                      Anonymous
                      Inactive

                        Hi SRV, I was wondering how everything turned out for you?  I have a relative in the exact same situation and am wondering if this is a side-effect from Opdivo.

                        • May 29, 2019 at 2:57 pm
                        SRVilly
                        Participant
                          Hello – I’m so sorry I missed your question. I ended up having two “spots” on my small bowel found via a PET/CT scan. I opted to have surgery since nothing was working to get my Red Blood cell or Hemoglobin up and we had to find out if it was a recurrence of Mel or inflammation due to the Opdivo. The surgical oncologist removed the two spots on my small bowel, tied them back up, and tested them. It ended up being melanoma on both spots. After 5 crummy days in the hospital, I was released and within a few weeks I was feeling 100% better and all my blood work has been back to normal. I’m back on my bi-weekly Opdivo treatments and feeling great. My last PET/CT was “fairly” clear, a couple bright spots here and there, but nothing that my onc was concerned about.

                          So, it ended up not being a side effect of the Opdivo, which was good, so I could continue treatment, but it was a recurrence while I was on Opdivo. The surgery removed all findings of Mel so since I did have such a good response to Opdivo, we opted to start back up on the Opdivo only. I think if anything else pops up, we may move to the Ipi/Nivo combo. But for now, I’m taking my bi-weekly trek for my infusion, enjoying a couple hours of “relaxing and music” and living life. A couple months of inconvenience, but hopefully back on the right track.

                          Best of luck to you, your relative and everyone else.
                          SRVilly

                        • November 29, 2018 at 11:45 pm
                        Jubes
                        Participant

                          Yep. I’m anaemic but the doctors just shrug and say it’s due to the disease. I feel ok. But I’ve been anaemic for 4years. They don’t seem to want to do anything about it. As  I’ve had some lung removed and have inflammation through my body it’s hard to tell if breathlessness could be from anaemia or something else  

                          Anne-Louise

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