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2+ year roller coaster ride is over
Sad to say my husband of 46 years passed away this week after a gallant fight with pancreatic cancer. He was the second person in the US approved for a trial of namodenoson when his health took a drastic downturn, so he never had the chance to try it to see if it would help or not. He was stage 4 when diagnosed and battled with the usual chemo drugs, but the cancer became resistant and his death was just two months after his last chemo. I'm sadder than sad.
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Unfortunately my husband is not a candidate for a surgery as well. How did he got approved for trials?
I cant imagine what you are going through right now. I know people often say at least his not suffering but im sure you still want him to be around you and fight!!
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1 ReactionNamodenoson is a drug that was recently approved for compassionate use for pancreatic cancer in the US. There are no trials in this country going on for it right now that I know of, but they have approved it for a "trial of one" in cases I think where other options are exhausted. Our oncologist and team needed to jump through some hoops with the company in Israel I think, then the FDA in order for Dan to receive it. Grateful to them for their efforts, however Dan's health failed right at the time the drug arrived so he never had the chance to try it. They didn't want to introduce a new drug with possible side effects while they were trying to figure out what was going on with his health without the drug. It turned out to be "something" around the spine/brain... first thought to be the shingles virus as he had had shingles about the time seizures began, but then thought it was his cancer that had spread. Anti virus and anti seizure medicines seemed to help for a week or two, but then a reversal into more seizures. Progression was quick when he requested only drugs just for pain and comfort. I agreed completely with his decision, but still was not ready to lose him.
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3 ReactionsAs my husband said to me couple of days ago“even when im gone I want you to keep your head up”. Please do so as well!
I know this is stupid but im kind of embarrassed, and ashamed that this happened to us. Weird
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5 Reactions@sheridanb, thank you for updating the group. Also thank you to you and your husband for advancing pancreatic cancer care by participating in a clinical trial.
I send you a gentle (virtual) hug as you navigate this unfamiliar territory without your partner of 46 years. Should you wish to connect with others who understand, please join the discussions in the Loss & Grief support group https://connect.mayoclinic.org/group/loss-grief/
How are you doing?
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4 ReactionsI am very sorry for your loss. We are a year and a half in on this journey. My husbsnd is having low dose chemo every other week.
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1 ReactionReally hoping that works for you both. It really is a roller coaster of emotions as things will work for a while, then search for the next thing that will work for a while. The low dose chemo gave Dan a reprieve from the harsher treatments for a while which was really nice, but I think his cancer had just spread too much before it was ever found. Other people on this site are a testament that those with pancreatic can live for many years. Wishing you the best.
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