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@talkativeinfl

my husband is on the same treatment and they were going to give him less sandostatin and add another infusion that COULD compromise his bone marrow and put him into lukehmia if his red blood cell count get too low. Its already too low so he didnt wanna gamble. He is also 76 as of this past April. I am fortunate that the only pain he has complained about was shoulder pain but he is tired often. He no longer has the energy to do the things he took pleasure in and when he DOES push himself he pays for it for days.

My heart breaks for you and your husband as we seem to be on a similar path. God bless you and your husband. I pray every night that they find a cure for PNet before its too late but hopefully it will be caught sooner with enough awareness.

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Replies to "my husband is on the same treatment and they were going to give him less sandostatin..."

This all sounds so familiar. His major pain is also in left shoulder. I feel so bad as he also tries to do things and is exhausted and achy for days. We go next week again. The sandostatin helps with the nausea. I know there are so many worse off, it's just I worry about him. Cat scan tomorrow to see how things are since pet scan three months ago. Hope things go well for you and your husband. Let me know if they lower shit and hiw that works.