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      Participant

        It depends on how activated your immune system is and for how long. I received 2 shots of ippilimumab before falling out of a drug trial for immune toxicity.

        The colitis for me went away in a few days after starting on prednisone, but the damaged colon seemed to take awhile to recover so bowel movements weren't normal for at least a couple weeks if not longer in each instance.

        I had a few rounds of colitis, as I started to taper off prednisone the first time (100mg down to 60mg) the immune system roared back into action damaging liver and colon and landed me in the hospital, dehydrated and lacking electrolytes.

        Prednisone saved my life, but the long term effects of prednisone are no joke. 

        I started prednisone 100mg within a week after second ippi treatment (due to extreme chills and colitis).  Was on prednisone for 5 1/2 months  It will take at least that much time to regain the strength I lost. Prednisone in high enough doses for long enough can cause muscle deterioration.

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        Participant

          Depending on where the "swollen lymph node" is, it could be something else. My primary care physician thought it was a swollen lymph node and it turned out to be subcutaneous metastasis melanoma of a regressed primary.

          After surgery the surgeon said there were no lymph nodes in that area of my neck near the superficial parotid gland.

          Not sure if that helps any. Just my experience.

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          Participant

            When comparing these two trials… know that the ipi only arm (20% chance) of the nivo/ipi trial BMS 915 is going to be removed at some point soon. They have emailed providers about it.  I would be hesistant to start the ipi 10mg arm of the pembro trial if your husband does poorly on prednisone.  Perhaps consider the nivo trial as the better bet as when they remove the ipi 10 mg arm… they plan to put those patients on nivo. Which means for a short while you could be on ipi10 mg and not know it… blinded study and all… by they are going to move on removing the ipi 10mg arm from the 915 hopefully by September.

            Be sure that your oncologist knows about this announcement. If you want to read more look in the "stuck between two trials thread".

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              Participant

                Oops, looks like your already found that thread and have read it, I was reading too fast and jumped down past a paragraph. Regardless the remaining ipi dose in the nivo/ipi arm of BMS 915 will be at 1 mg as opposed to the standard care level of 10 mg per infusion. From what I've read it is after multiple infusions of ipi and at a higher dose is what matters.

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              Participant

                I have had severe upper gi pain due to acid reflux, pain of at least 7 on a scale of 10. Quickest way to know for me if the pain is caused by stomach issues is go be seen in urgent care or ER and get some maalox with lidocaine. If i had that level of pain I’d be asking for relief. Good luck. You shouldn’t ‘tough this one out’. 

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                Participant

                  I can corroborate that info regarding the BMS 915 trial. An email was received last Wednesday July 12th by one of the the Mayo Clinic research trial nurses from BMS. It read that those who were blinded into the ipi only arm will be unblinded and allowed to go on nivo. I don't know if they will be blinded between recieiving ipi with nivo or not (I suspect so).

                  I spoke with the Mayo research nurse Friday afternoon July 14th.

                  I'm not the original poster but was very pleased original poster bothered to reply with that info.

                  It is not done yet. But apparently it will happen, they are working on it.

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