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Good Scan News

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  • Post
    • February 24, 2017 at 3:54 pm
    marta010
    Participant

      After 5 tremondously difficult years, my husband FINALLY is responding to treatment!  His latest PET/CT scan showed a significant reduction in the tumor activity in his cervical lymph nodes and minor reduction in his periportal and portacaval nodes.  Better yet is that his brain MRI showed stability with no new tumors.  His last Keytruda infusion was in July 2017 – had to take a break due to a sudden brain edema event that required a craniotomy and Gamma Knife.  Currently, he's continues to take Dabranib – we hope to discontinue that after his next scans in 3 months if the response continues.  His quality of life still is hampered by joint pain in the hips and knees which limits his mobility.  Would love to know what others are taking to mitigate this side effect.  Thanks.

      Ann

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    • Replies
        • February 24, 2017 at 4:53 pm
        AliCat61
        Participant

          That's wonderful news, Ann! My husband gets his first infusion Monday, not even sure at this point of medication and dosage, most likely opdiva and yervoy. He has previously had a year of Interferon treatment and experienced general achiness and joint pain, along with extreme tiredness and stomach issues. We found that time in a hot tub helped with the aches, as well as heat wraps (rice) that could be microwaved and applied to problem areas. 

          I hope that you continue to get good scan results. 

          • February 24, 2017 at 5:44 pm
          jennunicorn
          Participant

            Always love some good news on here. I too deal with joint pain and inflammation.. which is pretty sucky at 30 years old. My oncologist prescribed pain medication for when the pain is really bad. I use turmeric in about everything I can, mostly smoothies and I have a turmeric creamer that I use in coffee and can mix as just a drink by itself. I also started taking Move Free joint supplement, hoping that helps a bit but too soon to tell yet. My oncologist told me last time I saw her that if my joints continue to get worse then she is going to refer me to a rheumatologist. Right now, I can still walk around and do daily activities fine, I just have to deal with my knees hurting at the end of the day. I would definitely have your husband see a rheumatologist if his mobility is hindered by the joint pain. 

            All the best,

            • February 24, 2017 at 6:36 pm
            Aaron
            Participant

              I bet you are over joyed!  Congratulations and hope for more good news.

              • February 25, 2017 at 2:09 am
              Mat
              Participant

                I recently acquired arthritis as a side effect from ipi-nivo.  Kenalog (steroid) shots have helped.  Tried to taper off prednisone from 20 to 5mg.  At first ok, but at 5mg I was in too much pain.  There is a recent report from John Hopkins on treatments of immunotherapy induced arthritis.  No great answers, but a small sample.  High class problems if treatment is otherwise going well.  We can all limp a little bit.

                • February 25, 2017 at 3:45 am
                maperny
                Participant

                  That is wonderful news for you and your husband!

                  • February 25, 2017 at 4:28 am
                  snow white
                  Participant

                    Fantastic news! so happy for your both!

                    Jen

                    • February 28, 2017 at 12:05 am
                    tschmith
                    Participant

                      That's wonderful news after five tough years!  Pretty amazing!  I've been through various treatments and have had melanoma fracture my L2.  I have joint and back pain and find that it is better when I get some gentle exercise.  Is he able to do that?  The elliptical is my favorite.  Advil helps but I don't like to take it too often.

                      All my best…

                      Terrie

                        • April 27, 2017 at 9:06 am
                        EricCalvin
                        Participant
                           

                          In research, it has been proved that doing exercise should be the first priority when having joint and back pain. My grandparents were also dealing with joint pains, so last month they had paved their backyard's driveway by getting in contact with Suffolk County asphalt companies who had installed asphalt driveway for my grandparents to have a walk so that they could able to start doing their daily exercises which can help to prevent their joint pains.

                        • February 28, 2017 at 12:05 am
                        tschmith
                        Participant

                          That's wonderful news after five tough years!  Pretty amazing!  I've been through various treatments and have had melanoma fracture my L2.  I have joint and back pain and find that it is better when I get some gentle exercise.  Is he able to do that?  The elliptical is my favorite.  Advil helps but I don't like to take it too often.

                          All my best…

                          Terrie

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