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CURRENTLY – May 12, 2023:

My husband has had 2 PET scans that were clean, the last was in April, 2023. We are so thankful for this! He is dealing with muscle weakness and anemia and fatigue currently. Not sure what is causing the anemia, but he started iron supplement 3 weeks ago.  Blood work shows iron level isn’t low, but other things are off. His oncologist appears to not be interested in his blood work. He seems only to report the PET scan results and that is it. My husband did get through the pericarditis and not on any medications for it. Will have Echo next week as a follow-up with Cardiologist. I’m still being proactive with his healthy eating and removing toxins from our home. I do believe that has made a huge difference.  And have supplements that we both take to keep our immune system and inflammation down. I need to find a doctor that will be interested in him since he has health issues. They may not be related to the immunotherapy, but I suspect they are related to the shock his system went through when he had the fluid buildup back in 2021. I am looking for a Functional Medicine center that will find the root cause of his weakness, anemia, and fatigue. He is still taking thyroid meds, too.

This is my husband had melanoma removed from the back of his ear in May, 2019. Lymph nodes checked were clear. No treatment recommended.  In 2020, my husband noticed a hard nodule in his neck on the same side as the melanoma was removed. Of course, with covid we couldn’t get into doctors for a while.  He had surgery in May, 2020 to remove the lymph nodes affected.  Margins looked good.  Started Opdivo in September, 2020.  X-Ray revealed that there was some scar tissue or something else so another surgery was done in October, 2020 to remove that.  It was clear.  Had radiation in December, 2020, while taking Opdivo biweekly.  He handled radiation well and opdivo too.  Then in April/May, 2021 timeframe he started feeling very fatigued and his eating decreased dramatically.  He continued the Opdivo with continued biweekly visits to the oncologist and blood work.  This past Monday, June 14, 2021, my husband started feeling pain in his chest when he breathed.  He did not receive his Opdivo treatment and went to ER instead.  He has been in ICU for 3 days. He grew much worse Tuesday as his blood pressure dropped dangerously low and they found fluid around his heart and drained it, but it did not give him much relief.  He didn’t experience any more chest pain, but his blood pressure was still very low.  They gave meds to keep it up. They though he had a severe infection somewhere in his body causing this, but didn’t find any in the fluid they drained. They then thought it might be the Opdivo causing inflammation in his body. Started treating him with meds.  I had told them on Monday I thought it was the Opdivo as I had observed him the past couple of weeks go downhill fast.  He couldn’t eat but a few bites and feel sick even to the point of throwing up a couple of times.  I don’t feel the doctor acted on our concerns. So now my husband is improving, but still very weak and confused at times.  Not sure if that is a side effect of the meds and will clear up or if the low blood pressure has caused some damage.  The hospital ICU is taking very good care of him I believe.   I’m just scared that he didn’t get treatment soon enough.

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Stage at Diagnosis

Stage 3

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Unknown Stage